Three months. It has been almost exactly three months since my last post. A lot of people have been getting on me (mostly my mother). "Where is your blog?" "You better get to posting!"
Chillax. I will do it when I do it. I've actually lost track of time. Believe me, this child gives me PLENTY of material day in and day out. I've just gotten wrapped up in loving him at HOME. Turns out, being a mom, even at home, is busy work! I've become pretty good at taking care of him, but in the mean time, I have been a pretty crappy friend being wrapped up in my little bubble. I love all of you who have stuck with me and I am sorry! It is my new resolution to step it up a notch.
I do not know where summer went! Our little family has settled in, being hospital free for record time. I can honestly say I've grown up more in the past 9 months than I have in the past 28 years. Everything has been put into perspective. I have truly learned what is most important and have been taught to cherish and treasure every single thing my son does. Believe me, not a day goes by that I do not thank the Lord. Every night I close my eyes and thank him. I thank him for this blessing of a son he chose me to have. It's hard for us to not look at those baby blues of his without getting teary eyed. This child is a walking miracle!
Parker is doing well, physically and mentally. He is playing and "gibbering". His little voice over the baby monitor is an alarm clock I've grown accustomed to. Though I will love the days when I can sleep again, I will miss his little voice waking me up. I did not think it was possible to love him more, but I do. Every. Single. Day.
Chubby Cheeks!
Baby Blue Eyes!
Momma! Dadda! Baba!
Giggles!
I cannot get enough of him! Ahh!
Let's go back to December 2013. Remember we had doctors tell us that there was a significant amount of brain damage. I have yet to see it and unfortunately continue to look for hints or clues that it is there I know I shouldn't do that. Believe me, but I do. I can't help it!
Something happened when we came home the last time from the hospital. I just got myself into this funk and feeling like so much of a failure I was miserable to be around. I would literally cry spontaneously about our situation at least five times a day. I literally questioned every aspect of Parker's being. What could I have done differently. I was placing all kinds of blame on myself. Can you say depressed much? I am woman enough to admit that I was depressed. I was miserable! Sleeping was impossible and fear of losing Parker was giving me so much anxiety I was literally losing my hair and eating my way through every fast food restaurant in Whiteside County.
Once I was able to admit that I couldn't fight these demons alone I went to my doctor. He point blank told me, "Caitlin. His diagnosis isn't going to change. This doesn't go away. So we need to figure out a way to deal with it. He needs you."
The crazy thing is, he knew exactly what I needed to hear. It's like I always knew his condition wouldn't go away, but to have someone look at my tear stained face and tell me that. Whoa. It was too late to be considered post-pardum depression, but he contributed my anxiety to the fact that for the first time since Parker was born I was home...alone. Every emotion and little bit of experience I had with his situation hit me like a ton of bricks at once! There weren't any distractions. When he was in the hospital I never worried about myself or what I was feeling or dealing with. I worried about him and what he was feeling and dealing with. So, in hindsight I should have taken care of me, too. My doctor is right, I am not good to him if I am not good. Lesson learned.
I continue to live the fear of him relapsing every day. To ease my mind we've become part of an early intervention program. Since we've last chatted Parker has had the amazing opportunity to welcome new people to his inner circle. By inner circle, I mean therapists. He gets to play with them every week and for the most part he genuinely likes it.
Being a part of this program was the best decision Casey and I ever came to. Granted, it's admitting your child has a level of developmental delay. However, denying it does NO GOOD.
Did I cry about this? Sure did.
Do I continue to cry about it? Sure do.
It's hard seeing your baby struggle. I hate it! If he has a bad session I almost always cry to my husband. I just want him to do good and not struggle. It's like his little brain gets it, but his body just can't do it. It frustrates him and he gets upset. Ultimately it's heartbreaking. I just wish he got it naturally like every other baby. However, wishing doesn't make it so. It is what it is.
BUT can I tell you how amazing his care team is? They do not judge and they love my baby! When he cries they hug him and love him and as a mother that is exactly what I want him surrounded with. It is the kind of encouragement and support he doesn't always get from typical medical staff. Plus they come to our home so Parker is in his "comfort zone." He sees the same faces every time and even gives them that contagious smile when they walk in.
I hate that we are in this situation, but I love that there is a program out there for people like us. It's so important, when faced with a diagnosis like we had, to tap into those resources social workers give you in the hospital. If we hadn't chatted with her, we never would have known this even existed. They will follow Parker until he is 3 and then, if need be, there are other programs he can be a part of. Why not? These therapists have a trained eye and his best interest in mind. Never hurts to try and worth every penny. They are there for literally everyone as long as the diagnosis qualifies.
Being a first time mom I will admit that though some things do come natural, a lot does not. I had no clue some of the things he should be doing at this point.
Some examples.
1. Picking up objects with his fingers and not palm. --> Whoops.
2. Eating some table food. --> Hmmm...
3. Crawling. -->Dangit!
4. Clapping. --> Well...almost so we will count it!
5. Pooping on the toilet. --> Just kidding!
I've cried over the "What Your Baby Should Be Doing" list a lot. So many people tell me that babies are different and will do it when they do it. Well, that is very true for a lot of babies. However, our baby has a neurological condition. I know he will do it when he does it, but at the end of the day, he might not. No doubt he needs to be taught and given a little extra push than most babies. I don't want to say he's different, but he is different! There isn't really a DIFFERENT way to say it. Grrr...
He throws up. He cries. He gets fevers. Every single time I naturally get a little nervous. It's so hard to figure out what is his condition and what is normal baby ick. Seeing how he can't tell me what's wrong yet, I play the guessing game a lot. I don't want to be one of those moms that rushes to the pediatrician or ER with every ailment so I usually call my husband and we go through the steps of our Hydro Checklist! :-)
- Fever?
- Vomiting?
- Fatigue?
- Irritability?
Those are sure signs of something going on with his Hydrocephalus. However, those are also signs of, oh I don't know, a little thing we like to call the FLU. So at the end of the day it's all about tapping into those instincts and just taking a deep breath. We've had one pediatrician visit this summer because Parker had a horrible cough and runny nose that kept him (and us) up all night. We sure did high five when it was just allergies. YES! No brain surgery or hospital stay! Obviously we knew it was something related to a cold or allergies since he was sneezing and coughing, but we honestly never know what diagnosis he has that will land him in the hospital. Darn shunt.
I hate to see him sick, but he needs to get sick. I can't keep him germ-free in our little bubble forever. So, I let my guard down...a little. Let's be real. Sure do cover and sanitize everything in public. WASH YOUR HANDS PEOPLE. I know for a fact people don't wash their hands after they go to the bathroom. No thank you.
"Yes he is cute. Go wash your hands."
Parker is still a major creep with the ladies so he attracts a lot of attention where-ever we go. Major flirt. He has spontaneous giggles when he sees pretty ladies. It's really hysterical, but when he keeps doing it, creepy. I really, really hope he outgrows this nervous giggle otherwise Parker will never survive around the ladies. For now he gets away with it because he is so darn cute!
So, in a nutshell we have been busy, but overall, good. We still have our challenges every day, but man are surrounded by great people to help us fight. One more thing, did you know that September is Hydrocephalus Awareness Month? Did you know that 1 in 500 children will be affected by this condition? That is too much! Do Parker and other Hydro Warriors a favor...wear blue one time this month and tell someone, anyone, why! With a little more awareness the possibility, or in this case the shuntability, of research and funding would increase dramatically. Awareness Matters. Wear Blue.
Sunday, September 14, 2014
Sunday, June 8, 2014
Sometimes Even I'm at a Loss for Words
It would seem that life was continuing at home. After three weeks we headed back to Iowa City to get Parker's stitches out. Complete dejavu. This was at the time over a month ago that we took Parker to his surgery follow-up appointment to then only be immediately admitted the following day for three weeks. To say I was nervous about this appointment is an understatement.
The day before our appointment Parker projectile vomited, everywhere. This also added to my level of anxiety regarding him getting sick again. I told the doctor, "So, Parker projectile vomited everywhere. I fear this is the start of something bad. This is exactly what happened last time."
She looks at me and nods. Says nothing. Absolutely nothing.
You know those awkward times when you are waiting for a response, but you just get a stare? That was this situation. Then, I ask, "Sooo I guess we have to just sit here and wait? You can't do anything?"
"Yes," she replied. "I understand why you are scared and nervous, but he doesn't have a fever," she adds.
So, we took Parker home and continued to try to find a new definition of what our lives would be. Not going to lie, I was looking for the vomiting and fever to commence at any moment. It never did. No matter how hard it is, you have to continue living and just find a way to be normal. At this moment I still have no clue what normal is for us. I have become quite the helicopter parent, hovering over everything Parker does. I examine his diapers, monitor his food intake, take his temp several times a day and check his entire body for strange rashes. I can safely say that I drive both Casey and Parker absolutely crazy with my hovering antics. Sometimes they need to put me in time out.
While we've been home we have known about a couple of our closest friends who were planning on giving Parker two benefits. This entry is a day after our first benefit. Some of our dearest friends and family pulled off a very successful event in honor of our sweet angel baby.
When you find out that someone is giving you not one, but two benefits, you are just at a loss for words. That is hard to admit, because frankly, I am RARELY at a loss for words. The love and support people have for our family just overwhelms me - in a very good way of course.
I mean there are t-shirts out there worn by hundreds of people for my son! How freaking awesome is that!?! Talk about Hydrocephalus awareness! You can bet a ton of people at Wal-Mart check-out lines will be Googling Hydrocephalus, now.
As Casey and I were preparing for the benefit a lot went on in our little family that people are unaware of. Most of the attendees were unaware that Parker still wakes up every hour at night and I had slammed three AdvoCare Spark drinks, having only had less than 3 hours of sleep. We try everything to keep him comfortable because his incisions are still healing and he suffers terrible headaches in warm weather. The day of the benefit, Parker spit up every single bottle, which is very much not normal for him. His temp was slightly elevated and there was one point in the afternoon where I decided I wasn't going to attend the benefit because I was so worried about him.
When he spit up yet another bottle I sat on my couch and sobbed to my mom,who was all set to babysit him for a couple hours so Casey and I could attend the benefit together. I was literally crying my eyes out because I continue to fight blinding anxiety over my son's illness and when he will get sick again. I am in constant fear of losing my baby. My mom just sat there and listened to me. She listened to all of my fears and anxieties. When I was finally done sobbing she decided to speak.
"Cait you can't always worry about him. Babies spit up. Babies cry. Babies get fevers-especially teething babies," she said.
I reply, "Yeah mom, but those babies do not have a stupid brain disease. Those parents don't live every single day on edge."
"Those moms don't huge their babies not knowing if that's the last hug they will get in a while. I NEVER know when he will be taken away from me again," I add.
Her eyes fill with tears too. It pains her to see her daughter fight so hard to have a normal family. She continues on that my basket-caseness (exact words God love her) rubs off on Parker. He can sense my anxiety and when I'm a mess, he's a mess. Basically she told me to buck up and leave. She raised two children and they were fine.
Okay. I get it. There isn't anything I can do to stop an infection or malfunction. If it's happening, it's happening. Sometimes you have to let the cards play out. It's just...hard!
I was an absolute nervous wreck for this benefit. Being the center of attention is definitely not at the top of my list and if we weren't bringing Parker I'd say some of the attention was deferred to me. We took Parker in the morning to send the golfers off. When I opened the door to greet everyone, baby in hand, I couldn't believe it. I saw so many people who haven't even seen him. I have an almost 6 month old baby that people haven't been able to see because he has spent almost half of his little life in a hospital. These people not only include close friends, but family as well.
My husband was nominated to say a few words, because Lord knows, I could not handle it. I can write and hide behind the computer screen, but to get up in front of people and speak about Parker in such an emotional state, noooo way. He definitely did it and was amazing. Actually he wrote much of the speech himself only asking me for a little input. During his "Thank You" speech at dinner I started crying, shocker. I just never pictured myself, here. Who would? I know. No one would. But to be here and living this life. It was just a lot of "heavy" going on in that moment. When he was done I excused myself and sat in the bathroom to regain composure.
"How did we get here? How is this my life? How is this MY benefit?"
When i excited the bathroom, I realized that everyone was in such amazing spirits during the golf outing and dinner. I had a really hard time not crying through it to be completely honest. I wanted to cry, mostly happy tears, but sad tears too. Sad tears for my sweet baby. This was a reminder of what he has and will continue to endure with his illness. It's such a heartwarming experience to have so many people who care about you and your family, all in one room. I did not know most of the attendees, which only added to the warmth my heart was feeling. They haven't even met Parker, but their heart and prayers go out to him. People offered me words of encouragement.
"Keep on keepin' on!"
"You, my dear, are amazing. I do not know how you do it."
"I pray for your son every single night."
I mean the list goes on and on. They've never met me, but for some reason, our story has made it's way to them and touched their hearts. So much that they purchased dinner tickets, bid on silent auction items and introduced themselves to me to show their support. I still cannot believe it.
By time the night was over I literally went from feeling like the most unlucky mom to the luckiest mom in the room. All of these people. All of these smiles! The energy and optimism they had was exactly what we needed. Even if the monetary donations weren't involved, having people there to show their support was more than enough. We weren't alone in fighting this battle.
Casey and I cannot even think of a way to thank everyone. I mean, as I've said before, I am at a loss for words. We woke up today a little groggy and speechless. Parker was of course an angel for his Nana, having not spit up AT ALL after I left him. He woke up working on his fitness in his crib, entertaining himself so much that we didn't even know he was up. We had a heart attack at 6:45AM without his wake-up call.
Someday I will share these stories with Parker. I will let him read my blogs, certainly when he's old enough to understand, and express to him how much he is loved not only by his parents, but by so many others. I will stress how lucky he was to have the opportunity to grow up in such an amazing community. A community that acknowledges the hard times and celebrates the good. A community that saw him through high school graduation and continued to lift him up, when he was down. A community that prayed for him every single night. A community that shared in the tears his mother shed and helped wipe them away. Lastly, a community that showed his parents what love and support could mean.
We are forever grateful to the planning committee and participants in the benefit. You have given us so much love and support and it is our hope that this is the beginning of something very good for our little family.
Blessings and love to you all!
Assessments, Molds, Bubbles and Home
After Poop-a-Palooza 2014 I was able to regain a little more self-control. Parker was on his little back for weeks. If you remember we weren't able to pick him up or move him around without a lot of effort from the nursing staff. Because of this he has a pretty bad flat spot. I think I described it before as a cliff.
At the time of hospitalization we were celebrating Parker's "4 Month Birthday". At this point babies should be holding up their heads. Parker was not holding up his head. He was practically a newborn baby. You can't blame the kid. He has a HUGE head. I swear his head is the size of some 3 year old's head. It's a cute hydro head, but a big one for sure.
So, after a little pushing, the Physician Assistant agreed for the physical therapy consult. "He isn't moving around because he just had surgery," she said.
"He's not moving around because his head is the size of a 10 year old. Let's be real. It has nothing to do with surgery and everything to do with his Hydrocephalus," I reply.
She looks at me blankly. Commence stare down.
Why I had to push for this is beyond me. Hello. He is 4 months old and cannot hold up his head. Having just spent three weeks on his back and coming off of a surgery a little over a month ago, the kid doesn't have a chance. I guess I didn't see what the big deal was. Just call the Physical Therapist and have her see Parker. It's our bill. Hello.
My absolute favorite Physical Therapist in Iowa City stopped by. She assessed Parker Hydro Journey #1 and was sad to see him again. She said, "Well he's not doing some things he should be doing, but let me teach you some tricks."
Yes! Thank you! I am a first time mom and I have a child with "different" needs. I know this. The Physical Therapist and I had a long discussion about Parker's future developmentally. She told me about some programs we can get plugged into back home. I agreed that we should definitely look into it. We had a nice discussion about how parents of kids who need a little more attention sometimes act on giving more attention or pretend like they are "normal" and wing it.
I am not a gambler. I don't "wing it". Especially when it comes to my son. Casey and I definitely went through phases of grief when our son was diagnosed. Like I've said before, he has an incurable illness. We can do our best to treat him and control it, but we can't take it away. Parker will live a lifetime of worry and headache pain. It's an absolutely heart breaking reality as a parent. No control over your child's pain. So, when I'm offered some control and when someone finally says "this is what you can do to help him" you better believe I'm going to do it.
"Some parents just don't think their child needs extra help or attention. They just see how it goes as they get older. It's definitely been my experience that the wait and see approach isn't always the most beneficial when they are this little," she said.
I reply, "I am not doing him any favors by pretending he's like he's on track. The idea that he isn't definitely broke my heart. I am done complaining about it. I've asked doctors for months what I can do to help my son and they've all said, wait and see, and love him."
She nods.
"Thank you for giving me something to do to help. It might not be much, but to help him develop and gain strength is amazing," I said.
Tears sting my eyes. I couldn't help it. As I type this tears form again thinking about our conversation. As a mother I feel so helpless. At times I feel like a failure. I was telling my husband just a week ago how much of a failure I feel like sometimes. God created a woman to be able to bear children and bring them into this world happy and healthy. What an amazing gift! Obviously my "mother mold" broke somewhere and something went wrong... I know a lot of people close to me would disagree with that, but its how I feel. Like I've said before, no matter what anyone says, I will always blame myself. I cannot help the way I feel.
I had ONE job. Gosh!!!!
Reflecting on where my mold broke I also realize other unique gifts God gives to unconventional mothers. Some women can't conceive or carry their own babies. I am sure they feel the same way. God gives those mothers the gift of patience, which undoubtedly, makes them amazing mothers when they finally get those little angels in their arms. So, he definitely makes up for areas in which we feel defeated.
I guess what I'm trying to say is though I feel like my mold broke, I also realize that I was given other attributes at a higher scale that enable me to cope. My husband said God gave me humor, strength and perseverance above everything else. He said that's what gets our son through this.
He's right. Now, where do I sign!
Parker is high risk for a lot not only because of his Hydrocephalus, but because he had a Grade IV brain bleed at birth. In fact he qualifies for a lot of assistance developmentally because of his brain bleed, not his Hydrocephalus ironically. My biggest fear is Cerebral Palsy, or CP. The reality of it keeps me up at night. As if having Hydrocephalus and the possibility of brain damage isn't enough, let's give the kid CP. I've been told that CP can be diagnosed anytime from months to a couple years old. It's like holding your breath every time he is examined.
After our Physical Therapy assessment we were ready to go home. Parker would be quarantined for a bit at home. At the end of the day, if he were to get Staph, the damage would be done during surgery. We were just trying to keep his immune system "clean" from outside germ exposure. The doctor did not send us home with antibiotics. We were in charge of keeping his incisions clean and dry. Sounds easy enough. Yeah right.
Did I mention the surgeon who put in his ventric or external shunt did not shave his hair in that area? Quite fun ripping that band-aid off to clean his incision. SUPER fun time at our house. Every little clean turned into a mini wax session for poor Parker. I often wanted to shave it myself, but decided against it because I am a chicken and fear the razor would cut him, thus giving him an infection. Paranoid much?
My last question to our Neurosurgeon before we left was, "Now where can I buy that bubble for Parker to live in?"
He laughed.
"Oh. You thought I was kidding? Nice try," I reply.
So we head home with a baby a month older, three brand new incisions, an adorable quilt of the solar system courtesy of the Dance Marathon Team, and a whole new set of emotions and nerves. We also leave with new wipes, ointments, band-aids, formula and diapers. Do not forget the diapers! You open up one pack and they are yours! Boo-yah! Clean house, man! Every time we leave the hospital I feel like I just took a trip to the baby aisle at Wal-Mart. Love it.
Walking out of the hospital is always a relief, but at the same time the most terrifying experience. I feel like a normal family in the confines of the hospital. When we walk out of the secured hallway with the rest of the public I realize that we aren't the normal family. People stare at my son. They look at me with that all too familiar sympathetic smile. They question how something like this can happen to a child so small. Been there done that!
The drive home is usually quick and the first night at home is absolutely horrible. I am always a nervous wreck and camp out in the nursery. Without the heart monitors and 24/7 nursing staff I feel beyond terrified. I remember escaping to Wal-Mart for groceries when we were home that first week. It felt like a vacation.
Casey asked me, "Are you sure you remember how to drive?"
"Very funny. Yes I remember how to drive," I reply. To myself I thought, do I? It has been a month! I made it to my car feeling like I left something at home. Oh yeah, my baby. My little precious angel who I had been with every single day. It was strange to not have him with me. I had a heavy heart leaving him at home. When I was alone I was thinking how different he was. He was sooo different. He wasn't eating, laughing, or sleeping. I thought that this was the time I "lost" a piece of my son. Every time he goes into surgery I am terrified of what will happen or who he will be when he comes out.
I remember crying to a friend on the phone telling her how different he was. I was absolutely terrified. It was honestly like he wasn't even here with me. It took several days for him to come back to me. I think he was "homesick" for the hospital! As crazy as that sounds he has spent so much time there with all that attention, he was out of sorts! He adjusted eventually, but it was a very scary time.
I am grateful for each day I have with him at home. Every single day is a battle. Every spit-up, higher temperature, sleepless night, headache, etc.. scares the holy heck out of me. I never take a second, minute or day for granted. Truth is, I never know when he will be taken out of my arms again. It is my constant reality and unfortunately the odds are not in my favor.
Hydrocephalus sucks.
At the time of hospitalization we were celebrating Parker's "4 Month Birthday". At this point babies should be holding up their heads. Parker was not holding up his head. He was practically a newborn baby. You can't blame the kid. He has a HUGE head. I swear his head is the size of some 3 year old's head. It's a cute hydro head, but a big one for sure.
So, after a little pushing, the Physician Assistant agreed for the physical therapy consult. "He isn't moving around because he just had surgery," she said.
"He's not moving around because his head is the size of a 10 year old. Let's be real. It has nothing to do with surgery and everything to do with his Hydrocephalus," I reply.
She looks at me blankly. Commence stare down.
Why I had to push for this is beyond me. Hello. He is 4 months old and cannot hold up his head. Having just spent three weeks on his back and coming off of a surgery a little over a month ago, the kid doesn't have a chance. I guess I didn't see what the big deal was. Just call the Physical Therapist and have her see Parker. It's our bill. Hello.
My absolute favorite Physical Therapist in Iowa City stopped by. She assessed Parker Hydro Journey #1 and was sad to see him again. She said, "Well he's not doing some things he should be doing, but let me teach you some tricks."
Yes! Thank you! I am a first time mom and I have a child with "different" needs. I know this. The Physical Therapist and I had a long discussion about Parker's future developmentally. She told me about some programs we can get plugged into back home. I agreed that we should definitely look into it. We had a nice discussion about how parents of kids who need a little more attention sometimes act on giving more attention or pretend like they are "normal" and wing it.
I am not a gambler. I don't "wing it". Especially when it comes to my son. Casey and I definitely went through phases of grief when our son was diagnosed. Like I've said before, he has an incurable illness. We can do our best to treat him and control it, but we can't take it away. Parker will live a lifetime of worry and headache pain. It's an absolutely heart breaking reality as a parent. No control over your child's pain. So, when I'm offered some control and when someone finally says "this is what you can do to help him" you better believe I'm going to do it.
"Some parents just don't think their child needs extra help or attention. They just see how it goes as they get older. It's definitely been my experience that the wait and see approach isn't always the most beneficial when they are this little," she said.
I reply, "I am not doing him any favors by pretending he's like he's on track. The idea that he isn't definitely broke my heart. I am done complaining about it. I've asked doctors for months what I can do to help my son and they've all said, wait and see, and love him."
She nods.
"Thank you for giving me something to do to help. It might not be much, but to help him develop and gain strength is amazing," I said.
Tears sting my eyes. I couldn't help it. As I type this tears form again thinking about our conversation. As a mother I feel so helpless. At times I feel like a failure. I was telling my husband just a week ago how much of a failure I feel like sometimes. God created a woman to be able to bear children and bring them into this world happy and healthy. What an amazing gift! Obviously my "mother mold" broke somewhere and something went wrong... I know a lot of people close to me would disagree with that, but its how I feel. Like I've said before, no matter what anyone says, I will always blame myself. I cannot help the way I feel.
I had ONE job. Gosh!!!!
Reflecting on where my mold broke I also realize other unique gifts God gives to unconventional mothers. Some women can't conceive or carry their own babies. I am sure they feel the same way. God gives those mothers the gift of patience, which undoubtedly, makes them amazing mothers when they finally get those little angels in their arms. So, he definitely makes up for areas in which we feel defeated.
I guess what I'm trying to say is though I feel like my mold broke, I also realize that I was given other attributes at a higher scale that enable me to cope. My husband said God gave me humor, strength and perseverance above everything else. He said that's what gets our son through this.
He's right. Now, where do I sign!
Parker is high risk for a lot not only because of his Hydrocephalus, but because he had a Grade IV brain bleed at birth. In fact he qualifies for a lot of assistance developmentally because of his brain bleed, not his Hydrocephalus ironically. My biggest fear is Cerebral Palsy, or CP. The reality of it keeps me up at night. As if having Hydrocephalus and the possibility of brain damage isn't enough, let's give the kid CP. I've been told that CP can be diagnosed anytime from months to a couple years old. It's like holding your breath every time he is examined.
After our Physical Therapy assessment we were ready to go home. Parker would be quarantined for a bit at home. At the end of the day, if he were to get Staph, the damage would be done during surgery. We were just trying to keep his immune system "clean" from outside germ exposure. The doctor did not send us home with antibiotics. We were in charge of keeping his incisions clean and dry. Sounds easy enough. Yeah right.
Did I mention the surgeon who put in his ventric or external shunt did not shave his hair in that area? Quite fun ripping that band-aid off to clean his incision. SUPER fun time at our house. Every little clean turned into a mini wax session for poor Parker. I often wanted to shave it myself, but decided against it because I am a chicken and fear the razor would cut him, thus giving him an infection. Paranoid much?
My last question to our Neurosurgeon before we left was, "Now where can I buy that bubble for Parker to live in?"
He laughed.
"Oh. You thought I was kidding? Nice try," I reply.
So we head home with a baby a month older, three brand new incisions, an adorable quilt of the solar system courtesy of the Dance Marathon Team, and a whole new set of emotions and nerves. We also leave with new wipes, ointments, band-aids, formula and diapers. Do not forget the diapers! You open up one pack and they are yours! Boo-yah! Clean house, man! Every time we leave the hospital I feel like I just took a trip to the baby aisle at Wal-Mart. Love it.
Walking out of the hospital is always a relief, but at the same time the most terrifying experience. I feel like a normal family in the confines of the hospital. When we walk out of the secured hallway with the rest of the public I realize that we aren't the normal family. People stare at my son. They look at me with that all too familiar sympathetic smile. They question how something like this can happen to a child so small. Been there done that!
The drive home is usually quick and the first night at home is absolutely horrible. I am always a nervous wreck and camp out in the nursery. Without the heart monitors and 24/7 nursing staff I feel beyond terrified. I remember escaping to Wal-Mart for groceries when we were home that first week. It felt like a vacation.
Casey asked me, "Are you sure you remember how to drive?"
"Very funny. Yes I remember how to drive," I reply. To myself I thought, do I? It has been a month! I made it to my car feeling like I left something at home. Oh yeah, my baby. My little precious angel who I had been with every single day. It was strange to not have him with me. I had a heavy heart leaving him at home. When I was alone I was thinking how different he was. He was sooo different. He wasn't eating, laughing, or sleeping. I thought that this was the time I "lost" a piece of my son. Every time he goes into surgery I am terrified of what will happen or who he will be when he comes out.
I remember crying to a friend on the phone telling her how different he was. I was absolutely terrified. It was honestly like he wasn't even here with me. It took several days for him to come back to me. I think he was "homesick" for the hospital! As crazy as that sounds he has spent so much time there with all that attention, he was out of sorts! He adjusted eventually, but it was a very scary time.
I am grateful for each day I have with him at home. Every single day is a battle. Every spit-up, higher temperature, sleepless night, headache, etc.. scares the holy heck out of me. I never take a second, minute or day for granted. Truth is, I never know when he will be taken out of my arms again. It is my constant reality and unfortunately the odds are not in my favor.
Hydrocephalus sucks.
Monday, May 19, 2014
Fire in the Hole!
After the drama subsided from our room situation with the Cough A Lots, we were finally able to relax a little. Parker had been exposed to who knows what, so I was not happy. Once everything settled down I had the opportunity to snuggle with my baby and really look at him.
I took one really good look at him square in the face and I instantly see something wrong with him.
I ask, "Why is his ear like that?"
Casey looks at him and doesn't notice anything. He sighs and just gives me the "Caitlin you are seriously losing your mind look, but I don't dare say it out loud face".
"Casey look at his ear! It is inches below the other one. They are not symmetrical," I say!
He says, "Oh...oh...ooooooooh....His ears resemble Slough from the Goonies...".
"Don't ever say that," I yell-of course trying not to laugh because it was very true.
As you can see in his picture his ear is sticking out and VERY different from the other one. I send a picture to the person who can descalate me faster than a Xanax. My dad. He says, "It's cute and to carry on. Who cares if his ears aren't even?"
True. Thank you for that does of reality as always dad! He does not react and is amazing in crisis situations.
Then I notice that his soft spot is very, very different. Prior to surgery and even prior to being admitted into the hospital his soft spot was still concave and that was our "normal" baseline for him. Now it was lined up with his bones. That would be normal for a child who didn't have a huge head. Not for Parker, though. No more swimming pool.
Cue panic...!
The nurses come in as I am panic central. Casey was about ready to call off work for another five days since I was clearly losing my mind. Again.
"Call the doctors. Seriously call the doctors! His shunt is not working," I scream!
They look at Parker and say, "Well, he looks okay."
Seriously I realize that he looks "okay", but I need to know if this is his new baseline meaning, no more pool. Wait, what do you mean he looks okay? Do you not see his ears? I realize you people see a lot in your day, but cmon'! This is not normal.
Just at that moment our favorite Neurosurgeon (in training) in purple crocs enters the room to see how his favorite patient, Mr. Parker, is doing. Poor guy.
"I am FREAKING out" I scream!
He asks, "What's going on?"
"First of all, look at his ears. Problem numero uno, Doc. Second of all, he no longer has his pool. The shunt is NOT working. Clearly, Just look at him," I state.
He gets out his handy dandy wand to check Parker's shunt settings. After checking he proves to me that his setting was exactly where it should be. "See here look, he says."
I reply, "No. I don't care. It's not the same. WHY is it not the same?"
Casey was more polite than I was and humored the doctor by looking at the setting. Sure didn't get up and look at it. I was ticked that he even assumed I didn't believe him. I believe you, doctor, I just want you to explain to me WHYYYYY it looks different and if this is what I should look for in the future.
Not that hard, right?
He couldn't answer me; going on and on about how the pressure setting was correct and the Shunt Series (x-rays and scans of his shunt in head and belly) were all normal. The doctor honestly was talking in circles about how Parker needs morphine and the nurses told him that I said he couldn't have any. It's not that Parker "couldn't" have morphine, it's that he didn't need it. I allowed the morphine was Parker was admitted into the ICU and had the ventric put in. I won't watch him in pain. Tylenol was doing the trick. I am not into drugging my 4 month old and making him sick from morphine when he doesn't need it. Let's be real. He left after I refused to listen to him.
The nurses remained in the room and I said, "Seriously the fact that he wants to drug Parker has nothing to with the fact that his head is CLEARLY different. Please explain to me how morphine solves any of our problems today?"
They replied, "It doesn't. We are sorry."
Parker's nurses were fabulous and I could tell they were just as confused as I was about the situation. Parker was playing and laughing. He wasn't in pain. I will go on record as saying I do not expect doctors to know the answers to all of my questions. Especially doctors in medical school. However, if you do not know the answer then tell me that. Then go find someone who does. That's it! Sure has been the standard practice where-ever I've worked.
A little while later I am still concerned as all get out and I was deterring myself from a nervous breakdown by partaking in the biggest time waster ever created - Pinterest. I was busy planning dinners that I will never cook and rooms I won't decorate when I see Parker's surgeon enter our room.
I slam my phone down and state, "Thank GOD you are here!"
Clearly our friend in the purple crocs tattled on me.
He looks at me and walks over to Parker. "What's going on? He looks fine...look at him."
"You know doctor that's exactly what I've been doing all day and he does not look fine to me," I said. "Look at his ears and his soft spot. It's very different."
Soon after Casey, the nurses, doctor and I surround Parker in his crib. We are listening intently on what the doctor has to say. He explained to us that his ear was uneven because of swelling. After all, the shunt didn't go in easily. He then says that after the resident doctor came in, he went and chatted with him and said I was upset. NO <insert sarcasm>! The surgeon took the opportunity to re-examine at the scans and assured me that everything was in it's place and all was well. However, there was one small issue...
Parker needed to poop!
There's something they don't teach you in Hydro Mom school! If your child has Hydrocephalus and is constipated, it will affect the pressures in their brain, thus causing their soft spot to raise. He told us that parents bring their kids into the ER all the time because their shunts aren't working and turns out, it's because they are constipated. Go figure.The doctor could see Parker's, ummm...back-up in the scans.
Unfortunately this is not a new issue for Parker. The baby hates pooping. In our case it's obviously a little more serious than the average kid. Needless to say it's a celebration every time Parker poops. I mean, get the ice cream cake from Dairy Queen and hang up the streamers. Parker pooped! YAY! Parker is a baby of many poops ranging from knuckle deep in poop, to thick, clay like poop we refer to as, "Clay Aiken" poops. Pooping is such a big deal at our house that Casey will ask me daily while he's at work.
"Did Parks poop today?"
"Yeah, we had a Clay Aiken," I say.
I took a sigh of relief and told Parker if he didn't knock this crap out he was going to drive me to drink.
"Oh come on Parker don't do that to your mom." the doctor says!
Looking back this was one of those times where I had verbal diarrhea and shouldn't have admitted my son was giving me a potential drinking problem...in front of his doctor and nurses. Oye.
Parker was given two days worth of "please poop pills" and still hadn't gone. I swear this child hates to poop. Right as we were supposed to be leaving he decided it would be a good idea to go poop. Thank the Lord.
Resident doctor in the purple crocs never came back into our room. Casey said I should apologize to him for being crazy and I did plan on it, but for some reason, he never came back. Then sent in the surgeon every time after that. Clearly not his first rodeo in dealing with crazy train moms.
I am woman enough to admit that this was the first time I was wrong. Parker's shunt was working. He pooped and was healing well. Now we had to await for a visit from a very important visitor-Physical Therapist. Parker's flat head was giving him some issues and this was a visit we were very, very anxious about.
I took one really good look at him square in the face and I instantly see something wrong with him.
I ask, "Why is his ear like that?"
Casey looks at him and doesn't notice anything. He sighs and just gives me the "Caitlin you are seriously losing your mind look, but I don't dare say it out loud face".
"Casey look at his ear! It is inches below the other one. They are not symmetrical," I say!
He says, "Oh...oh...ooooooooh....His ears resemble Slough from the Goonies...".
"Don't ever say that," I yell-of course trying not to laugh because it was very true.
As you can see in his picture his ear is sticking out and VERY different from the other one. I send a picture to the person who can descalate me faster than a Xanax. My dad. He says, "It's cute and to carry on. Who cares if his ears aren't even?"
True. Thank you for that does of reality as always dad! He does not react and is amazing in crisis situations.
Cue panic...!
The nurses come in as I am panic central. Casey was about ready to call off work for another five days since I was clearly losing my mind. Again.
"Call the doctors. Seriously call the doctors! His shunt is not working," I scream!
They look at Parker and say, "Well, he looks okay."
Seriously I realize that he looks "okay", but I need to know if this is his new baseline meaning, no more pool. Wait, what do you mean he looks okay? Do you not see his ears? I realize you people see a lot in your day, but cmon'! This is not normal.
Just at that moment our favorite Neurosurgeon (in training) in purple crocs enters the room to see how his favorite patient, Mr. Parker, is doing. Poor guy.
"I am FREAKING out" I scream!
He asks, "What's going on?"
"First of all, look at his ears. Problem numero uno, Doc. Second of all, he no longer has his pool. The shunt is NOT working. Clearly, Just look at him," I state.
He gets out his handy dandy wand to check Parker's shunt settings. After checking he proves to me that his setting was exactly where it should be. "See here look, he says."
I reply, "No. I don't care. It's not the same. WHY is it not the same?"
Casey was more polite than I was and humored the doctor by looking at the setting. Sure didn't get up and look at it. I was ticked that he even assumed I didn't believe him. I believe you, doctor, I just want you to explain to me WHYYYYY it looks different and if this is what I should look for in the future.
Not that hard, right?
He couldn't answer me; going on and on about how the pressure setting was correct and the Shunt Series (x-rays and scans of his shunt in head and belly) were all normal. The doctor honestly was talking in circles about how Parker needs morphine and the nurses told him that I said he couldn't have any. It's not that Parker "couldn't" have morphine, it's that he didn't need it. I allowed the morphine was Parker was admitted into the ICU and had the ventric put in. I won't watch him in pain. Tylenol was doing the trick. I am not into drugging my 4 month old and making him sick from morphine when he doesn't need it. Let's be real. He left after I refused to listen to him.
The nurses remained in the room and I said, "Seriously the fact that he wants to drug Parker has nothing to with the fact that his head is CLEARLY different. Please explain to me how morphine solves any of our problems today?"
They replied, "It doesn't. We are sorry."
Parker's nurses were fabulous and I could tell they were just as confused as I was about the situation. Parker was playing and laughing. He wasn't in pain. I will go on record as saying I do not expect doctors to know the answers to all of my questions. Especially doctors in medical school. However, if you do not know the answer then tell me that. Then go find someone who does. That's it! Sure has been the standard practice where-ever I've worked.
A little while later I am still concerned as all get out and I was deterring myself from a nervous breakdown by partaking in the biggest time waster ever created - Pinterest. I was busy planning dinners that I will never cook and rooms I won't decorate when I see Parker's surgeon enter our room.
I slam my phone down and state, "Thank GOD you are here!"
Clearly our friend in the purple crocs tattled on me.
He looks at me and walks over to Parker. "What's going on? He looks fine...look at him."
"You know doctor that's exactly what I've been doing all day and he does not look fine to me," I said. "Look at his ears and his soft spot. It's very different."
Soon after Casey, the nurses, doctor and I surround Parker in his crib. We are listening intently on what the doctor has to say. He explained to us that his ear was uneven because of swelling. After all, the shunt didn't go in easily. He then says that after the resident doctor came in, he went and chatted with him and said I was upset. NO <insert sarcasm>! The surgeon took the opportunity to re-examine at the scans and assured me that everything was in it's place and all was well. However, there was one small issue...
Parker needed to poop!
There's something they don't teach you in Hydro Mom school! If your child has Hydrocephalus and is constipated, it will affect the pressures in their brain, thus causing their soft spot to raise. He told us that parents bring their kids into the ER all the time because their shunts aren't working and turns out, it's because they are constipated. Go figure.The doctor could see Parker's, ummm...back-up in the scans.
Unfortunately this is not a new issue for Parker. The baby hates pooping. In our case it's obviously a little more serious than the average kid. Needless to say it's a celebration every time Parker poops. I mean, get the ice cream cake from Dairy Queen and hang up the streamers. Parker pooped! YAY! Parker is a baby of many poops ranging from knuckle deep in poop, to thick, clay like poop we refer to as, "Clay Aiken" poops. Pooping is such a big deal at our house that Casey will ask me daily while he's at work.
"Did Parks poop today?"
"Yeah, we had a Clay Aiken," I say.
I took a sigh of relief and told Parker if he didn't knock this crap out he was going to drive me to drink.
"Oh come on Parker don't do that to your mom." the doctor says!
Looking back this was one of those times where I had verbal diarrhea and shouldn't have admitted my son was giving me a potential drinking problem...in front of his doctor and nurses. Oye.
Parker was given two days worth of "please poop pills" and still hadn't gone. I swear this child hates to poop. Right as we were supposed to be leaving he decided it would be a good idea to go poop. Thank the Lord.
Resident doctor in the purple crocs never came back into our room. Casey said I should apologize to him for being crazy and I did plan on it, but for some reason, he never came back. Then sent in the surgeon every time after that. Clearly not his first rodeo in dealing with crazy train moms.
I am woman enough to admit that this was the first time I was wrong. Parker's shunt was working. He pooped and was healing well. Now we had to await for a visit from a very important visitor-Physical Therapist. Parker's flat head was giving him some issues and this was a visit we were very, very anxious about.
Friday, May 16, 2014
Introducing Mr. & Mrs. Sir Coughs A Lot
Parker had to remain in the ICU the night of his surgery. It always feel like a million pounds has been lifted off my shoulders when they transfer him out of the ICU. Granted, he's still in the hospital, but the regular Pediatric inpatient floor is way more relaxed and the sounds are different. Instead of all the intense beeps you hear kids playing and even laughing. After dealing with all the "heavy" for three weeks it was a welcomed change of scenery. We journeyed our way out. Nurses and doctors said, "See ya later Parker!"
Um. No. Let's not plan that. So I say, "No offense, but I am not in a rush to see ANY of you any time soon. If I see you please let it be in an aisle at Super Target, cart full of cosmetics and Starbucks in hand."
They agreed.
Ironically we were taken to the same exact room we were in Shunt Surgery #1. The nurses commented on how cutie cute Parker was and went over their plan of attack. At this point we knew we would continue the hospitalization for 3-4 days. So, it was time to make ourselves comfortable in a new room...again.
Weekends at the hospital are my absolute favorite. It is literally a ghost town. No one is going there for appointments or scheduled surgeries. Because of this the nurse let us put little Parker in a stroller and walk around. I pushed his IV pole and Casey pushed the stroller. Our little angel was having the absolute time of his life walking around the hospital. Keep in mind he had been in a hospital bed for weeks at this point. So to see him sitting up, ventric free, was enough to put us over the edge with happiness. He was LOVING it and we were loving it. For a second I think we forgot our situation and we were enjoying being together. We laughed and went through strange corridors in the hospital. I have to say, it was...fun.
Of course the few passer by's looked at us sympathetically. It's definitely hard to not stare at someone who has a 4 month old baby hooked up to IVs and bandages all over their head. I get it and it doesn't bother me anymore. Just like when people stare at Parker's shunt or scars. I get it. It's strange.
It doesn't bother me...
It can't bother me..!
If it bothers me it will bother Parker and I don't want him to be embarrassed or ashamed of his scars. He is fighting quite the battle and he deserves to wear those scars proudly. Plus, as I've said before, he will come up with the most ridiculous of all ridiculous stories as to the origins of these scars. Not to mention if his shunt takes successfully this time, his hair will more than likely cover it up anyway. It will be up to Parker to share his story. I sure hope he does because it's one heck of a story!
When we got back to our room I realized that they had the other side set up for another baby. In my head I was thinking, "Well this is a double room, but surely they won't put anyone in here with Parker's risk to infection..." Last time we had this room we were alone in there the whole time.
Wrong. Next thing I know they are carting in an infant Parker's age and AN ENTIRE FAMILY. Here we are folks. Let me introduce Mr. and Mrs. Coughs-A-Lot.
I ask the nurse, "I thought Parker was supposed to be alone because of risk of infection?"
She says, "Oh I didn't see anything in his chart. Let me check."
Cue Jeopardy jingle.
Again...
And again...
By this point the family had everyone in there, including their fourth cousins. She came back in and said that he was okay. I was immediately annoyed, but decided to put Parker down for bed so we could grab some dinner. At this point most of the visitors next to us had left leaving just the infant's parents behind. Parker fell asleep and we grabbed dinner in the cafeteria.
When I get back the first thing I notice is that Parker had managed to rip off his bandages covering his brand new incisions. He had ripped it off and was playing with it. Hmmm...wonder how long it's been exposed to the Cough-A-Lots?
I went and found the nurse who was, I have to say, rude. At the end of the day they are staffed so thin in the Pediatric unit. There really aren't enough of them to go around and this poor nurse was running around like a chicken with her head cut off. However, we are here for an INFECTION and the last thing Parker needed was an open wound to his BRAIN.
She gets to us and calls the Neurosurgeon on call and he tells her they are about to head into emergency surgery and she'll have to do it. So, she comes in like a flash of lightening and does her best. Then she applied Bacitracin, or Neosporin. I say, "The surgeons never put Neosporin on his incisions before. I think it's because it makes it easier for Parker to rip them off."
Ready to rip my head off for telling her how to do her job (can't say that I blame her to be honest) she says, "This is what they said to do."
What do you know, less than 5 minutes later Parker ripped them off. Again. I am dead serious when I say I have never seen a surgeon put anything on his wounds when they bandaged them. No clue who told her to do that.
To say my blood was boiling at this point is an understatement. I found the nurse and said, "Parker ripped off his sutures again."
She then looks at me and says, "Oh this is going to be fun."
Really. Tell me more about how much FUN this is going to be. Please tell me because when we are here again in three weeks I will know exactly why and fun will not describe the situation.
I look at Casey as the Coughs A Lot family is in full force and they have another round of visitors coming in. I ask the nurse once again if it's okay Parker is in there and she says the curtain will separate us. Words cannot describe my utter amazement and disappointment. We came SOOOO far and to have it ruined in less than one day was extremely frustrating. I could not leave Parker that night. There was no way I would leave that room to have him rip off his sutures and not be checked on AND have these strangers in his room well past visiting hours.
So I pulled up a recliner next to his crib and proceeded to hold his little hands down all night. Our friendly neighbors' visitors did not leave until after 11PM. Did I mention they had a toddler? Yeah, toddlers are SUPER fun at 11PM. Around 1AM the poor infant starting coughing uncontrollably. I mean the poor little thing was coughing so bad that they had to call doctors to come in. The doctors came in and for over a half an hour that poor baby coughed. They couldn't get her to stop. It was definitely a bad situation and I couldn't help but over hear all that was happening. She was coughing up blood. The doctor says, "She must have a virus or infection."
OH THAT IS GREAT. FABULOUS ACTUALLY.
At 4AM Casey text me and asked if I was asleep. Nope. Not a wink. FML.
He came down promptly and took over. At exactly 6:30AM I get a frantic text from him saying that Parker was freaking out, Coughs A Lot Family was coughing A LOT, and he had pushed the "Help Button" 5 times and no one was coming. So I make way down there and check on Parker. Casey had since gotten him to sleep. Knowing he was safe and sound I go on a hunt for a nurse.
Crazy was my mood and I think I portrayed that mood accurately with my appearance. Bags under my eyes, hair a frazzled mess and Lord only knows what I was wearing. Looking back I hope I at least had on matching shoes. Doubt it.
I see my first unsuspecting victim. "Excuse me, are you Parker's nurse today?"
She replies, "No I am not. I can go get her for you in a couple minutes."
"No, you need to go NOW. I am VERY upset", I reply. She scurries off and I wait right where she left me. A nurse approaches me and tells me that she is one of two nurses for Parker that day. Oh that's interesting. TWO nurses today. Figures.
Cue verbal diarrhea.
"I am very upset and to be honest with you I feel like my son is not getting taken care of in this facility. Which is rather unfortunate seeing how we've received exceptional care up until this point."
She takes one look at me and digests my words. "Please come with me in this room" she says. Clearly the tears streaming down my face and raised voice is bad for business.
Smart choice. Lock the angry mother in a room.
She sits down and I just start crying my eyes out.
"Tell me what's going on. What has made you unhappy?"
Where do I begin. Oh you mean just this visit not my life.
I explain to her how we've come so far and we've been here literally a month. I talk about the Cough A Lot family. They cough literally all the time and use the patient restroom when it was a very clear rule to us that it was only for patients because it's sick to have adults use restrooms where kids are sick. HELLO. I explain that they had visitors until after 11PM. Then I go on to explain the sick baby that vomits blood and will without a doubt get my baby sick, and I ask her why the heck did we share a room to begin with. Explaining to her that up until this point we had to keep every single person away. We had been put through the ringer and I cannot even begin to explain how hard it was to keep people away and the anxiety it created for my husband and I. No one was allowed to see Parker and we were told to isolate him when we got home.
Why are we the ONLY ones making sacrifices here? I sure unleashed because to be completely honest none of what had transpired made any sense to me. She asked me what I wanted and I said. "I want our own room. This is ridiculous. Those people are coughing and puking up blood. I'm sorry but your super amazing curtain wasn't super enough. I heard everything that went on last night even though I didn't want to. I know that baby is sick and I know that Parker could get what-ever the heck she has and I am NOT HAPPY. We need a private room, even though the damage has been done."
Whew. got that out. She nods. Oh wait I have more to say.
I go on. "Also, I do not want you to say a word to Mr and Mrs Cough A Lot. Though they are the worst neighbors I've ever had at a hospital they are clearly going through a horrible experience with their baby and they don't need this drama. I want our sh*t packed up and moved without a word uttered to them. I refuse to create drama for a family that is going through hell."
She looks at me. Obviously taking a second to digest everything I've said.
She replies, "I will talk to the the charge nurse and see what I can do."
Nice attempt, but not good enough.
"We will have our own room. Anything less is unacceptable. I want to be completely honest with you and tell you this experience has been horrible. In fact, every single time we are on this floor it's horrible. For such a reputable hospital this floor does not offer the care for my son I feel that he needs. If he needs more care then maybe we don't belong here. At the end of the day I literally feel like your staff is not going to care for my son and I cannot trust any of you if I leave him. That is how I feel. I feel...like I can't leave him. I get that he needs more care and he has busy hands. He is a baby. If you can't handle it then we don't belong here. No matter what it is very clear that we need to be moved."
That hit home with her. Clearly we cannot be the only people with a baby that has busy hands and risk for infection. Luckily Parker has parents that can be with him. I do not expect them to sit there and watch Parker, but I can promise you that he was not checked on the entire night. That doesn't even bother me so much as having the family next to us exposing him to germs. If Parker was going to be exposed to germs we would have gladly exposed him to our family who was dying to see him.
"I understand everything you are saying. Please go back to your room and I will be right there", she says.
I go back to our room and tell Casey that I had officially fallen off my rocker and turned into the crazy person I would normally poke fun at. I wouldn't say that I let her "have it". My delivery of concern was tact and professional-definitely stuck to the facts of the situation. I know it wasn't her fault. She wasn't even there when this all went down. It is completely out of character for me to speak up about anything. I do not like drama in any way, shape or form. Do not want drama in my life and if it presents itself, then I am more than likely done with you on a personal level. So, to put on my big girl pants and confront my issues was a huge step for me. Parker is really bringing out a strength in me I never knew existed. He is my whole heart.
Less than twenty minutes later she was accompanied by another nurse and they packed Parker up and we were moved to our own room.
Those two nurses ended up being some of our favorite during our stay. She listened and understood me. Turns out, she remembered Parker. She was his nurse the day we were discharged, shunt #1. A new mother herself she completely empathized with my plea.
So that was the day I went crazy. Totally worth it.
Um. No. Let's not plan that. So I say, "No offense, but I am not in a rush to see ANY of you any time soon. If I see you please let it be in an aisle at Super Target, cart full of cosmetics and Starbucks in hand."
They agreed.
Ironically we were taken to the same exact room we were in Shunt Surgery #1. The nurses commented on how cutie cute Parker was and went over their plan of attack. At this point we knew we would continue the hospitalization for 3-4 days. So, it was time to make ourselves comfortable in a new room...again.
Weekends at the hospital are my absolute favorite. It is literally a ghost town. No one is going there for appointments or scheduled surgeries. Because of this the nurse let us put little Parker in a stroller and walk around. I pushed his IV pole and Casey pushed the stroller. Our little angel was having the absolute time of his life walking around the hospital. Keep in mind he had been in a hospital bed for weeks at this point. So to see him sitting up, ventric free, was enough to put us over the edge with happiness. He was LOVING it and we were loving it. For a second I think we forgot our situation and we were enjoying being together. We laughed and went through strange corridors in the hospital. I have to say, it was...fun.
It doesn't bother me...
It can't bother me..!
If it bothers me it will bother Parker and I don't want him to be embarrassed or ashamed of his scars. He is fighting quite the battle and he deserves to wear those scars proudly. Plus, as I've said before, he will come up with the most ridiculous of all ridiculous stories as to the origins of these scars. Not to mention if his shunt takes successfully this time, his hair will more than likely cover it up anyway. It will be up to Parker to share his story. I sure hope he does because it's one heck of a story!
When we got back to our room I realized that they had the other side set up for another baby. In my head I was thinking, "Well this is a double room, but surely they won't put anyone in here with Parker's risk to infection..." Last time we had this room we were alone in there the whole time.
Wrong. Next thing I know they are carting in an infant Parker's age and AN ENTIRE FAMILY. Here we are folks. Let me introduce Mr. and Mrs. Coughs-A-Lot.
I ask the nurse, "I thought Parker was supposed to be alone because of risk of infection?"
She says, "Oh I didn't see anything in his chart. Let me check."
Cue Jeopardy jingle.
Again...
And again...
By this point the family had everyone in there, including their fourth cousins. She came back in and said that he was okay. I was immediately annoyed, but decided to put Parker down for bed so we could grab some dinner. At this point most of the visitors next to us had left leaving just the infant's parents behind. Parker fell asleep and we grabbed dinner in the cafeteria.
When I get back the first thing I notice is that Parker had managed to rip off his bandages covering his brand new incisions. He had ripped it off and was playing with it. Hmmm...wonder how long it's been exposed to the Cough-A-Lots?
I went and found the nurse who was, I have to say, rude. At the end of the day they are staffed so thin in the Pediatric unit. There really aren't enough of them to go around and this poor nurse was running around like a chicken with her head cut off. However, we are here for an INFECTION and the last thing Parker needed was an open wound to his BRAIN.
She gets to us and calls the Neurosurgeon on call and he tells her they are about to head into emergency surgery and she'll have to do it. So, she comes in like a flash of lightening and does her best. Then she applied Bacitracin, or Neosporin. I say, "The surgeons never put Neosporin on his incisions before. I think it's because it makes it easier for Parker to rip them off."
Ready to rip my head off for telling her how to do her job (can't say that I blame her to be honest) she says, "This is what they said to do."
What do you know, less than 5 minutes later Parker ripped them off. Again. I am dead serious when I say I have never seen a surgeon put anything on his wounds when they bandaged them. No clue who told her to do that.
To say my blood was boiling at this point is an understatement. I found the nurse and said, "Parker ripped off his sutures again."
She then looks at me and says, "Oh this is going to be fun."
Really. Tell me more about how much FUN this is going to be. Please tell me because when we are here again in three weeks I will know exactly why and fun will not describe the situation.
I look at Casey as the Coughs A Lot family is in full force and they have another round of visitors coming in. I ask the nurse once again if it's okay Parker is in there and she says the curtain will separate us. Words cannot describe my utter amazement and disappointment. We came SOOOO far and to have it ruined in less than one day was extremely frustrating. I could not leave Parker that night. There was no way I would leave that room to have him rip off his sutures and not be checked on AND have these strangers in his room well past visiting hours.
So I pulled up a recliner next to his crib and proceeded to hold his little hands down all night. Our friendly neighbors' visitors did not leave until after 11PM. Did I mention they had a toddler? Yeah, toddlers are SUPER fun at 11PM. Around 1AM the poor infant starting coughing uncontrollably. I mean the poor little thing was coughing so bad that they had to call doctors to come in. The doctors came in and for over a half an hour that poor baby coughed. They couldn't get her to stop. It was definitely a bad situation and I couldn't help but over hear all that was happening. She was coughing up blood. The doctor says, "She must have a virus or infection."
OH THAT IS GREAT. FABULOUS ACTUALLY.
At 4AM Casey text me and asked if I was asleep. Nope. Not a wink. FML.
He came down promptly and took over. At exactly 6:30AM I get a frantic text from him saying that Parker was freaking out, Coughs A Lot Family was coughing A LOT, and he had pushed the "Help Button" 5 times and no one was coming. So I make way down there and check on Parker. Casey had since gotten him to sleep. Knowing he was safe and sound I go on a hunt for a nurse.
Crazy was my mood and I think I portrayed that mood accurately with my appearance. Bags under my eyes, hair a frazzled mess and Lord only knows what I was wearing. Looking back I hope I at least had on matching shoes. Doubt it.
I see my first unsuspecting victim. "Excuse me, are you Parker's nurse today?"
She replies, "No I am not. I can go get her for you in a couple minutes."
"No, you need to go NOW. I am VERY upset", I reply. She scurries off and I wait right where she left me. A nurse approaches me and tells me that she is one of two nurses for Parker that day. Oh that's interesting. TWO nurses today. Figures.
Cue verbal diarrhea.
"I am very upset and to be honest with you I feel like my son is not getting taken care of in this facility. Which is rather unfortunate seeing how we've received exceptional care up until this point."
She takes one look at me and digests my words. "Please come with me in this room" she says. Clearly the tears streaming down my face and raised voice is bad for business.
Smart choice. Lock the angry mother in a room.
She sits down and I just start crying my eyes out.
"Tell me what's going on. What has made you unhappy?"
Where do I begin. Oh you mean just this visit not my life.
I explain to her how we've come so far and we've been here literally a month. I talk about the Cough A Lot family. They cough literally all the time and use the patient restroom when it was a very clear rule to us that it was only for patients because it's sick to have adults use restrooms where kids are sick. HELLO. I explain that they had visitors until after 11PM. Then I go on to explain the sick baby that vomits blood and will without a doubt get my baby sick, and I ask her why the heck did we share a room to begin with. Explaining to her that up until this point we had to keep every single person away. We had been put through the ringer and I cannot even begin to explain how hard it was to keep people away and the anxiety it created for my husband and I. No one was allowed to see Parker and we were told to isolate him when we got home.
Why are we the ONLY ones making sacrifices here? I sure unleashed because to be completely honest none of what had transpired made any sense to me. She asked me what I wanted and I said. "I want our own room. This is ridiculous. Those people are coughing and puking up blood. I'm sorry but your super amazing curtain wasn't super enough. I heard everything that went on last night even though I didn't want to. I know that baby is sick and I know that Parker could get what-ever the heck she has and I am NOT HAPPY. We need a private room, even though the damage has been done."
Whew. got that out. She nods. Oh wait I have more to say.
I go on. "Also, I do not want you to say a word to Mr and Mrs Cough A Lot. Though they are the worst neighbors I've ever had at a hospital they are clearly going through a horrible experience with their baby and they don't need this drama. I want our sh*t packed up and moved without a word uttered to them. I refuse to create drama for a family that is going through hell."
She looks at me. Obviously taking a second to digest everything I've said.
She replies, "I will talk to the the charge nurse and see what I can do."
Nice attempt, but not good enough.
"We will have our own room. Anything less is unacceptable. I want to be completely honest with you and tell you this experience has been horrible. In fact, every single time we are on this floor it's horrible. For such a reputable hospital this floor does not offer the care for my son I feel that he needs. If he needs more care then maybe we don't belong here. At the end of the day I literally feel like your staff is not going to care for my son and I cannot trust any of you if I leave him. That is how I feel. I feel...like I can't leave him. I get that he needs more care and he has busy hands. He is a baby. If you can't handle it then we don't belong here. No matter what it is very clear that we need to be moved."
That hit home with her. Clearly we cannot be the only people with a baby that has busy hands and risk for infection. Luckily Parker has parents that can be with him. I do not expect them to sit there and watch Parker, but I can promise you that he was not checked on the entire night. That doesn't even bother me so much as having the family next to us exposing him to germs. If Parker was going to be exposed to germs we would have gladly exposed him to our family who was dying to see him.
"I understand everything you are saying. Please go back to your room and I will be right there", she says.
I go back to our room and tell Casey that I had officially fallen off my rocker and turned into the crazy person I would normally poke fun at. I wouldn't say that I let her "have it". My delivery of concern was tact and professional-definitely stuck to the facts of the situation. I know it wasn't her fault. She wasn't even there when this all went down. It is completely out of character for me to speak up about anything. I do not like drama in any way, shape or form. Do not want drama in my life and if it presents itself, then I am more than likely done with you on a personal level. So, to put on my big girl pants and confront my issues was a huge step for me. Parker is really bringing out a strength in me I never knew existed. He is my whole heart.
Less than twenty minutes later she was accompanied by another nurse and they packed Parker up and we were moved to our own room.
Those two nurses ended up being some of our favorite during our stay. She listened and understood me. Turns out, she remembered Parker. She was his nurse the day we were discharged, shunt #1. A new mother herself she completely empathized with my plea.
So that was the day I went crazy. Totally worth it.
Thursday, May 1, 2014
It All Comes to This
After pleading with the ICU pediatricians and nurses they agreed to hold off the no food rule for Parker as long as they possibly could. Luckily, for us, he slept a majority of the morning and it really wasn't that bad. Also, as luck would have it, the surgery ahead of Parker's got cancelled so he could have gone in a lot earlier than he did. But...we fed him. Oh well. That's our luck.
Ahh, yes, surgery day. The dreaded day of our entire visit. As I've said before, it's not like I didn't know this day was coming. After all, it was the day we were working for all those weeks. Parker was doing so well that we felt bad putting him through surgery. He was eating, laughing, and talking up a storm. Let's not forget his newest addiction to TV too. I mean, the kid, was living it up in the ICU like he was staying in the Presidential Suite at the Ritz Carlton. I had a tremendous amount of guilt looking at that happy baby knowing that in just a couple short hours he'd be in surgery.
I did not sleep a wink the night before his surgery. Anxiety was full force. This time was worse than the others because I had so much time to think about it. The other surgeries were emergency surgeries and happened so quickly.
You know what I do with extra time on my hands. I think. I think a lot.
I was perched up on a fancy high swivel stool sitting next to Parker's crib when I saw the two men in purple walking down the hall. Thank goodness for those glass doors.
Cue panic.
"They are coming, Casey. They are coming to take Parker."
He just looks at me. A serious expression spans over his face.
Parker is 110% content in his crib. He didn't have the slightest idea what was going on. Immediately I look at him and tears sting my eyes. He then gives me his ever famous pout face. Parker knew that Mommy was upset so I quickly pulled it together for my son. Parker does not need emotional people around him right now. He's definitely at the age where he can sense it and he gets super upset. So, needless to say, this extremely emotional Mommy now saves it for the shower. The Anesthesiologists came in and conversed with Parker's nurse about his vitals, which at the time, were all stable. Everything about him was stable, minus the brain cord sticking out of his head.
Then they move to him, forcing me to move from his side. They start asking us questions about his history with anesthesia and reactions to different medicines. Sadly, we have history to share with our extremely young child. I looked over at the clock and could hear it ticking as the minutes passed. I didn't have much time left. Everything happens so quickly right before surgery.
The Anesthesiologists tell me that they will take good care of him. Hmm...Never heard that before. Then they look at us and ask if we want to say good-bye.
Say good-bye... terrifying actually. It then becomes all too real.
Casey does so strongly. Then it's my turn. I walk up to my baby boy and kiss him on the forehead. He makes eye contact with me and puts his little hand up for me to hold. I kiss his hand looking at those beautiful baby blues that he got from his Daddy. Could this be the last time I see my son? I refuse to say good-bye, but tell him, "I will see you later. You be a big boy and don't give them too much trouble ya hungry beast."
The Anesthesiologists chuckle at my beast remark because they clearly do not know Parker.
He didn't stop looking at me until they wheeled him away.
Time suddenly stopped, but I could still hear the clock ticking. Ironically, it didn't seem to be moving. At this point the only thing moving was the room. I was dizzy. Dizzy from not eating and dizzy from the surge of anxiety I got when they took my angel baby away from me.
Casey and I sat in silence. I walked over to grab the Kleenex box and handed him tissue not wanting to interrupt his somber moment. I then sat back on my stool watching the hallway. Waiting for my sweet angel to come back to me.
Over two weeks we had been there. A majority of that time we weren't allowed visitors so it was just Casey and I with our separate set of emotions. There is always a guarantee to have one thing in common and that is the genuine concern for our son. During this time we both had our turns at being crazy. I took my crazy out mostly on objects. For instance, the lovely rented laptop I used that refused to let me use the "a" key or "tab". Just know that every blog I illustrated in that darn hospital was not without choice words, courtesy me.
Sitting in Parker's ICU room, without his crib, was sad. Families walked by and looked at us through the glass door. Some of the mom's I even recognized. New moms looked in the room terrified. Why are those people sitting in an empty room? Where the heck is their kid? I can only imagine the thoughts that were running through their heads because I have been in their place before wondering the same thing.
After a while the nurse came in and gave me a hug and assured me by the afternoon I'd be feeding Parker, snuggled together. Silently Casey and I pick up what was our home for over two weeks. We looked through cards and other gifts. Some from family and friends and some from complete strangers who wanted to brighten our little angel's day. We are grateful for each one of them.
In situations like this you want so badly to believe people, but being a realist (and I will admit at times a little negative) I can't think that 100% everything will be okay. The unknown will kill you. It kills me. The unknown is absolutely what wakes me and keeps me up at night. I will continue to live on pins and needles until Parker catches a break and is hospital free for a couple months. Until then, I am rather skeptic and on edge. As one of my wise uncles said to me, "One day at a time." He is all too familiar with this sort of stuff. He gets it.
Eventually Casey and I go for a walk on the floor. We choose not to venture too far in case our sweet angel came back. Eventually we made our way to the roof top retreat. Doctors and patients are soaking up the rays. Helicopters are coming in and out steadily. We sat there for a good ten minutes before realizing that neither of us were in any mood to sit on a roof and soak in some Vitamin K.
We went back to Parker's empty room and waited.
And waited some more....
...and some more.
Finally I perched myself back up on my fancy swivel stool so I could spy into the hallway. My nose was stuck in my Kindle reading the same stupid page 100 times over. Last time the surgery was done our nurse came in and told us Parker was on his way up. At this point it had been well over three and a half hours. I was nervous to say the least.
Then all of the sudden I see Parker's Neurosurgeon walking to our room. Why didn't he call the nurse? I hate when he pulls fast ones on me! Like taking days off.
Next thing I know he comes in and sits down on our recliner. Oh hey, have a seat? Do you want something to drink? Wait ... I don't live here. I mean I live here, but don't LIVE here. I do know where the free drinks are, though.
He says, "Well, the surgery was difficult. Parker's head was so flat from laying on it for a couple weeks the shunt wasn't very easy to place."
Blank stare. Tears fill eyes.
"Oh don't worry though, he's perfectly fine. I got it in."
.....................................................................................
Thanks for clearing that up, doc. Prrrrobably should have started the conversation by stating that!
At the end of the day, Parker does have one heck of a flat head. Picture a cliff. Now picture the side of a cliff. That's Parker's head. His surgeon doesn't want to go the helmet route because it will rub his shunt. So, we are basically not allowed to lay him on his back unless it's at night and he's sleeping. We will have therapy at home. More on that later.
He goes on to tell us that everything was good after that point and he was already down in recovery wiggling around. There would also be another couple days of intense antibiotic treatments. Then he says that we should be able to see him soon.
Thank. The. Lord.
When they brought Parker in he looked completely pale. Almost gray. Instantly I knew that we were in for a long night. I went over to him and was talking to him. He was of course crying. Then the vomiting started.
Parker proceeded to vomit and dry heave for over six hours. Have you ever seen an infant dry heave? I hope not. Not sure what happened, but for some reason he had a horrible reaction to the anesthesia and was a sick little guy all night. He literally vomited everywhere we went. Elevator? Vomit. MRI? Vomit. X-Ray? Vomit. Room? Vomit. Parker has been put under anesthesia two other times and never had this sort of reaction.
I was worried sick. My family reassured me that this was completely normal. I was so hysterical that the doctor came in to check him out and she, too, said it was normal. In fact, he could have been sick like that through the next morning. I was convinced his Neurosurgeon nicked something in his stomach when he was putting the tubing in. Of course that's what happened! Duh.
Luckily for us, he got over this sickness in the middle of the night. Turns out, the brain surgeon knows what he's doing.
The next morning they decided to transfer Parker to the regular Pediatric Inpatient Unit. Finally we were on the right path.
UMMM NOT SO MUCH.
Stay tuned. It's a "cue verbal diarrhea" all over the place.
Ahh, yes, surgery day. The dreaded day of our entire visit. As I've said before, it's not like I didn't know this day was coming. After all, it was the day we were working for all those weeks. Parker was doing so well that we felt bad putting him through surgery. He was eating, laughing, and talking up a storm. Let's not forget his newest addiction to TV too. I mean, the kid, was living it up in the ICU like he was staying in the Presidential Suite at the Ritz Carlton. I had a tremendous amount of guilt looking at that happy baby knowing that in just a couple short hours he'd be in surgery.
I did not sleep a wink the night before his surgery. Anxiety was full force. This time was worse than the others because I had so much time to think about it. The other surgeries were emergency surgeries and happened so quickly.
You know what I do with extra time on my hands. I think. I think a lot.
I was perched up on a fancy high swivel stool sitting next to Parker's crib when I saw the two men in purple walking down the hall. Thank goodness for those glass doors.
Cue panic.
"They are coming, Casey. They are coming to take Parker."
He just looks at me. A serious expression spans over his face.
Parker is 110% content in his crib. He didn't have the slightest idea what was going on. Immediately I look at him and tears sting my eyes. He then gives me his ever famous pout face. Parker knew that Mommy was upset so I quickly pulled it together for my son. Parker does not need emotional people around him right now. He's definitely at the age where he can sense it and he gets super upset. So, needless to say, this extremely emotional Mommy now saves it for the shower. The Anesthesiologists came in and conversed with Parker's nurse about his vitals, which at the time, were all stable. Everything about him was stable, minus the brain cord sticking out of his head.
Then they move to him, forcing me to move from his side. They start asking us questions about his history with anesthesia and reactions to different medicines. Sadly, we have history to share with our extremely young child. I looked over at the clock and could hear it ticking as the minutes passed. I didn't have much time left. Everything happens so quickly right before surgery.
The Anesthesiologists tell me that they will take good care of him. Hmm...Never heard that before. Then they look at us and ask if we want to say good-bye.
Say good-bye... terrifying actually. It then becomes all too real.
Casey does so strongly. Then it's my turn. I walk up to my baby boy and kiss him on the forehead. He makes eye contact with me and puts his little hand up for me to hold. I kiss his hand looking at those beautiful baby blues that he got from his Daddy. Could this be the last time I see my son? I refuse to say good-bye, but tell him, "I will see you later. You be a big boy and don't give them too much trouble ya hungry beast."
The Anesthesiologists chuckle at my beast remark because they clearly do not know Parker.
He didn't stop looking at me until they wheeled him away.
Time suddenly stopped, but I could still hear the clock ticking. Ironically, it didn't seem to be moving. At this point the only thing moving was the room. I was dizzy. Dizzy from not eating and dizzy from the surge of anxiety I got when they took my angel baby away from me.
Casey and I sat in silence. I walked over to grab the Kleenex box and handed him tissue not wanting to interrupt his somber moment. I then sat back on my stool watching the hallway. Waiting for my sweet angel to come back to me.
Over two weeks we had been there. A majority of that time we weren't allowed visitors so it was just Casey and I with our separate set of emotions. There is always a guarantee to have one thing in common and that is the genuine concern for our son. During this time we both had our turns at being crazy. I took my crazy out mostly on objects. For instance, the lovely rented laptop I used that refused to let me use the "a" key or "tab". Just know that every blog I illustrated in that darn hospital was not without choice words, courtesy me.
Sitting in Parker's ICU room, without his crib, was sad. Families walked by and looked at us through the glass door. Some of the mom's I even recognized. New moms looked in the room terrified. Why are those people sitting in an empty room? Where the heck is their kid? I can only imagine the thoughts that were running through their heads because I have been in their place before wondering the same thing.
After a while the nurse came in and gave me a hug and assured me by the afternoon I'd be feeding Parker, snuggled together. Silently Casey and I pick up what was our home for over two weeks. We looked through cards and other gifts. Some from family and friends and some from complete strangers who wanted to brighten our little angel's day. We are grateful for each one of them.
In situations like this you want so badly to believe people, but being a realist (and I will admit at times a little negative) I can't think that 100% everything will be okay. The unknown will kill you. It kills me. The unknown is absolutely what wakes me and keeps me up at night. I will continue to live on pins and needles until Parker catches a break and is hospital free for a couple months. Until then, I am rather skeptic and on edge. As one of my wise uncles said to me, "One day at a time." He is all too familiar with this sort of stuff. He gets it.
Eventually Casey and I go for a walk on the floor. We choose not to venture too far in case our sweet angel came back. Eventually we made our way to the roof top retreat. Doctors and patients are soaking up the rays. Helicopters are coming in and out steadily. We sat there for a good ten minutes before realizing that neither of us were in any mood to sit on a roof and soak in some Vitamin K.
We went back to Parker's empty room and waited.
And waited some more....
...and some more.
Finally I perched myself back up on my fancy swivel stool so I could spy into the hallway. My nose was stuck in my Kindle reading the same stupid page 100 times over. Last time the surgery was done our nurse came in and told us Parker was on his way up. At this point it had been well over three and a half hours. I was nervous to say the least.
Then all of the sudden I see Parker's Neurosurgeon walking to our room. Why didn't he call the nurse? I hate when he pulls fast ones on me! Like taking days off.
Next thing I know he comes in and sits down on our recliner. Oh hey, have a seat? Do you want something to drink? Wait ... I don't live here. I mean I live here, but don't LIVE here. I do know where the free drinks are, though.
He says, "Well, the surgery was difficult. Parker's head was so flat from laying on it for a couple weeks the shunt wasn't very easy to place."
Blank stare. Tears fill eyes.
"Oh don't worry though, he's perfectly fine. I got it in."
.....................................................................................
Thanks for clearing that up, doc. Prrrrobably should have started the conversation by stating that!
At the end of the day, Parker does have one heck of a flat head. Picture a cliff. Now picture the side of a cliff. That's Parker's head. His surgeon doesn't want to go the helmet route because it will rub his shunt. So, we are basically not allowed to lay him on his back unless it's at night and he's sleeping. We will have therapy at home. More on that later.
He goes on to tell us that everything was good after that point and he was already down in recovery wiggling around. There would also be another couple days of intense antibiotic treatments. Then he says that we should be able to see him soon.
Thank. The. Lord.
When they brought Parker in he looked completely pale. Almost gray. Instantly I knew that we were in for a long night. I went over to him and was talking to him. He was of course crying. Then the vomiting started.
Parker proceeded to vomit and dry heave for over six hours. Have you ever seen an infant dry heave? I hope not. Not sure what happened, but for some reason he had a horrible reaction to the anesthesia and was a sick little guy all night. He literally vomited everywhere we went. Elevator? Vomit. MRI? Vomit. X-Ray? Vomit. Room? Vomit. Parker has been put under anesthesia two other times and never had this sort of reaction.
I was worried sick. My family reassured me that this was completely normal. I was so hysterical that the doctor came in to check him out and she, too, said it was normal. In fact, he could have been sick like that through the next morning. I was convinced his Neurosurgeon nicked something in his stomach when he was putting the tubing in. Of course that's what happened! Duh.
Luckily for us, he got over this sickness in the middle of the night. Turns out, the brain surgeon knows what he's doing.
The next morning they decided to transfer Parker to the regular Pediatric Inpatient Unit. Finally we were on the right path.
UMMM NOT SO MUCH.
Stay tuned. It's a "cue verbal diarrhea" all over the place.
S-Day
I sit here writing this entry looking at my sweet angel baby sleeping in his over-sized hospital crib. I sit here knowing that tomorrow my angel is going to be taken in for his 3rd brain surgery in just a little over a month's time. Words cannot express my level of anxiety, fear and somehow hope all whirled into one.
It's not like I didn't know this day was coming. I knew it was coming over two weeks ago. The thought that he will be taken away from me, yet again, and put under for brain surgery never gets easier. Yesterday we learned that Friday would in fact more than likely be S-Day. Shunt Day. I slept less than 5 hours last night. I know putting the shunt back in is a step in the right direction. I know that this has to happen in order for Parker to go home. Surgery is scary. Brain surgery is SUPER scary.
We were juuust about ready to head out for a MRI when a flash of purple entered our room. Did I mention that Neurosurgeons wear purple here? I know. I know. Purple does not match the camo scrub hat. They are brain surgeons, not stylists.
The Resident Neurosurgeons (or Neurosurgeons in training) are always on the run, literally. I think this particular surgeon has gone through about six pairs of purple crocs (or so we've heard). He runs the rubber thin from all the running he does apparantely. This is also the same surgeon I scolded just a couple days ago for leaving a ventric cap on Parker's crib.
"Did you forget something" I asked holding up the orange ventric cap.
He replied, "The nurses usually get those."
Cue verbal diarhhea...
"Usually is not good enough. Do you see this monster baby with sticky fingers? If he chokes on this with all of his other issues I will not be happy" I replied with a death glare.
Can you imagine if Parker choked on a cap while here? He had to have CPR or something else because of a cap, not because of his situation. Unbelievable!
I took the cap and handed it to him and said, "Throw it away."
GAHHHH! He did throw it away. I think I scared him. I haven't found an orange cap since. Coincidence, I think not! Nurses are incredibly busy for crying out loud. You removed the cap, throw it away! Drives me crazy. How the heck would she know it's there anyway? Durp.
He came in and I knew we were about to hear something. The doctor informed us that we would be heading in for surgery either Friday or Monday. It's not considered emergency this time because Parker is stable and has his ventric is taking care of business for his brain. Next thing I know he's fetching the ever so famous release form. The same release form we've signed giving them the right to operate on our son and giving up our right to get ticked if something bad happens. It's always a little nerve wracking, especially given our current situation.
Casey is much braver than me in most situations and he signs his life away. Parker was set for surgery. They officially had our consent.
I of course ask if he will be involved in the surgery and he says that he or another resident would be present. Please remember to pick up all caps and debris from Parker's brain after you are done. Oye.
That was it, Parker was set for surgery. Wrong. It seems that no one, not even the Neurosurgeons, know what time Parker's surgery is going to be. How do you not know? I understand that they are busy people and emergencies definitely happen. However, this child thinks he is dying when he doesn't get to eat every two hours. Literally, every two hours. Yes I am exhausted.
So let's take all of his food away at midnight to only have surgery at 1PM on Friday. That sounds like a brilliant idea! NOT! The nurses who have Parker tonight and tomorrow already deserve a medal of honor. Parker is more traumatized by the fact that he's not eating more than the fact that he just had brain surgery. I know this because we've been through it, twice.
I've noticed an awful lot of coincidences this time around. I can't help but hope that our bad luck is about to end. Remember how I am an ultimate believer in signs? Well, I can't ignore the signs that have been thrown at me. I can only hope that collectively they mean something (knock on wood).
We've literally come full circle with everyone who has treated Parker since his NICU days. Literally. NICU staff doctor - passed him in the hall. NICU nurse-same situation. Parker's doctors and nurses have all been accounted for. It seems so strange that we've run into everyone when we aren't even on the same floor. It gets even stranger. Parker's nurse for his first shunt surgery has been M.I.A. We get here this morning and wouldn't you know...she is his nurse! We even ran into Doogie Howser, our favorite Pediatric Resident Doctor. I don't know, but I feel like it means something. We have run the course. We have persevered. We have come full circle.
On top of that...every penny I've found has been heads up! You better believe I grab those pennies and put them in my pocket. Every time I pull them out, heads up! When we leave here, better than when we came, I am going to place those pennies heads up for the next family. I hope they too have the same blessings we have had.
At this point I am more than likely reading into signs, but that's okay. What-ever gets us through at this point makes it all worth while. I've sat here day in and day out not knowing what each day will bring. Kids have come in and come out, while my sweet angel remains. It's safe to say it's Parker's turn.
Today/Tonight will be horrible for me. The day before and day of surgery is always the worst. Parker has no clue what's going on, thank goodness, but I do. Surgery is terrifying and all of those fears of waiting in the ICU surgery waiting room became reality. The silent prayers, sobs and crying children are in my near future. A piece of my heart is about to be on that operating table once again. My heart will not beat fully until I know he is okay. I swear I can feel it skipping beats as I wipe the tears away and struggle to breath.
Us mothers will give each other the same sympathetic look, tears stinging our eyes. This time we are a little more comfortable around each other having passed one another in the hallways for the past couple weeks. Each one of our stories different, but uniquely the same in that we have to watch our children continue to suffer. We will silently greet the new mothers who's hearts are the operating table for the first time.
Please remember Parker in your prayers this evening and tomorrow. Pray that he continues to show strength. A prayer for the doctors would be helpful as well. Pray that they take care of sweet Parker and that they remove all orange caps from his brain while sparing yet another pair of purple crocs.
It's not like I didn't know this day was coming. I knew it was coming over two weeks ago. The thought that he will be taken away from me, yet again, and put under for brain surgery never gets easier. Yesterday we learned that Friday would in fact more than likely be S-Day. Shunt Day. I slept less than 5 hours last night. I know putting the shunt back in is a step in the right direction. I know that this has to happen in order for Parker to go home. Surgery is scary. Brain surgery is SUPER scary.
We were juuust about ready to head out for a MRI when a flash of purple entered our room. Did I mention that Neurosurgeons wear purple here? I know. I know. Purple does not match the camo scrub hat. They are brain surgeons, not stylists.
The Resident Neurosurgeons (or Neurosurgeons in training) are always on the run, literally. I think this particular surgeon has gone through about six pairs of purple crocs (or so we've heard). He runs the rubber thin from all the running he does apparantely. This is also the same surgeon I scolded just a couple days ago for leaving a ventric cap on Parker's crib.
"Did you forget something" I asked holding up the orange ventric cap.
He replied, "The nurses usually get those."
Cue verbal diarhhea...
"Usually is not good enough. Do you see this monster baby with sticky fingers? If he chokes on this with all of his other issues I will not be happy" I replied with a death glare.
Can you imagine if Parker choked on a cap while here? He had to have CPR or something else because of a cap, not because of his situation. Unbelievable!
I took the cap and handed it to him and said, "Throw it away."
GAHHHH! He did throw it away. I think I scared him. I haven't found an orange cap since. Coincidence, I think not! Nurses are incredibly busy for crying out loud. You removed the cap, throw it away! Drives me crazy. How the heck would she know it's there anyway? Durp.
He came in and I knew we were about to hear something. The doctor informed us that we would be heading in for surgery either Friday or Monday. It's not considered emergency this time because Parker is stable and has his ventric is taking care of business for his brain. Next thing I know he's fetching the ever so famous release form. The same release form we've signed giving them the right to operate on our son and giving up our right to get ticked if something bad happens. It's always a little nerve wracking, especially given our current situation.
Casey is much braver than me in most situations and he signs his life away. Parker was set for surgery. They officially had our consent.
I of course ask if he will be involved in the surgery and he says that he or another resident would be present. Please remember to pick up all caps and debris from Parker's brain after you are done. Oye.
That was it, Parker was set for surgery. Wrong. It seems that no one, not even the Neurosurgeons, know what time Parker's surgery is going to be. How do you not know? I understand that they are busy people and emergencies definitely happen. However, this child thinks he is dying when he doesn't get to eat every two hours. Literally, every two hours. Yes I am exhausted.
So let's take all of his food away at midnight to only have surgery at 1PM on Friday. That sounds like a brilliant idea! NOT! The nurses who have Parker tonight and tomorrow already deserve a medal of honor. Parker is more traumatized by the fact that he's not eating more than the fact that he just had brain surgery. I know this because we've been through it, twice.
I've noticed an awful lot of coincidences this time around. I can't help but hope that our bad luck is about to end. Remember how I am an ultimate believer in signs? Well, I can't ignore the signs that have been thrown at me. I can only hope that collectively they mean something (knock on wood).
We've literally come full circle with everyone who has treated Parker since his NICU days. Literally. NICU staff doctor - passed him in the hall. NICU nurse-same situation. Parker's doctors and nurses have all been accounted for. It seems so strange that we've run into everyone when we aren't even on the same floor. It gets even stranger. Parker's nurse for his first shunt surgery has been M.I.A. We get here this morning and wouldn't you know...she is his nurse! We even ran into Doogie Howser, our favorite Pediatric Resident Doctor. I don't know, but I feel like it means something. We have run the course. We have persevered. We have come full circle.
On top of that...every penny I've found has been heads up! You better believe I grab those pennies and put them in my pocket. Every time I pull them out, heads up! When we leave here, better than when we came, I am going to place those pennies heads up for the next family. I hope they too have the same blessings we have had.
At this point I am more than likely reading into signs, but that's okay. What-ever gets us through at this point makes it all worth while. I've sat here day in and day out not knowing what each day will bring. Kids have come in and come out, while my sweet angel remains. It's safe to say it's Parker's turn.
Today/Tonight will be horrible for me. The day before and day of surgery is always the worst. Parker has no clue what's going on, thank goodness, but I do. Surgery is terrifying and all of those fears of waiting in the ICU surgery waiting room became reality. The silent prayers, sobs and crying children are in my near future. A piece of my heart is about to be on that operating table once again. My heart will not beat fully until I know he is okay. I swear I can feel it skipping beats as I wipe the tears away and struggle to breath.
Us mothers will give each other the same sympathetic look, tears stinging our eyes. This time we are a little more comfortable around each other having passed one another in the hallways for the past couple weeks. Each one of our stories different, but uniquely the same in that we have to watch our children continue to suffer. We will silently greet the new mothers who's hearts are the operating table for the first time.
Please remember Parker in your prayers this evening and tomorrow. Pray that he continues to show strength. A prayer for the doctors would be helpful as well. Pray that they take care of sweet Parker and that they remove all orange caps from his brain while sparing yet another pair of purple crocs.
Wednesday, April 23, 2014
Buy 2 Get the 3rd for Free!?!
As luck would have it our Neurosurgeron was out of the office when all heck broke lose a little over two weeks ago. We literally saw him for our follow-up appointment and the very next morning he left town. Obviously he needs to clear his schedule with us before he thinks he's going to take time out of the office. What kind of business are they running here! Casey and I have often wondered where he has been or if anyone from the office would be up to examine Parker or let us know what their plan of attack is.
So, in a nutshell, we've been sitting here for over two weeks while Parker is getting pumped full of antibiotics to kill off this staff infection. Really, there isn't anything anyone can do. It's more of a waiting game to make sure everything, and I mean everything, is gone before they open him up again. Surgery has been pushed back a couple of times. No one is allowed to visit anymore. Makes it kind of lonely for us, but it's what is best for Sir Parks.
Two weeks later I see a familiar face creepin' in the hall. Luckily doors in the ICU are all glass. That is fortunate if you are the ultimate creeper like myself. It is rather unfortunate if you have to pick out a wedgie or make rude gestures to anyone that may have ticked you off. Not that I've attempted any of that... (daily).
I say to Casey, "He's here"!
Casey looks at me confused.
"Parker's Neurosurgeon is here! Finally!"
We turn around and he walks in. To be completely honest he walked in rather slowly. He seemed a little afraid or timid to come in our room. Let's be real. Parker got an infection that he more than likely acquired during surgery.
Do we blame you? A little bit. Did you save his life and take care of him. Yes! Was this a risk (though extremely unlikely) that you warned us about? Absolutely.
We knew this was a possibility. At the time it seemed unlikely, but nevertheless, a possibility.
He says, "So...I can't believe this situation."
Really. Tell me more about how you can't believe we are in this situation. How was your time out of the office? Great? Ours too...oh wait. We freaking LIVE here and have been scared out of our minds for two weeks!
We go over the story with what happened and he nods. He's clearly read over the notes. He then goes on to say, "This never happens. Like rarely ever happens to me. I do not have patients that get infections."
Casey and I both give him "deer in the headlights" stares.
"I know it's hard, but please trust me. We will take every precaution in the OR" he says.
NOW you are going to take every precaution. Cue verbal diarhhea...
"Yeah I do not really trust you at the moment. I trust you know what you are doing, but it's hard to trust that this won't happen again because our luck is awesome. When you tell me that this rarely happens in your OR it makes me even more afraid that there is something wrong with Parker's immune system."
He nods. If this happens again that is something that they would have to explore. Why can't we explore those things while we are here for a month? No clue. That is part of the medical system that annoys me.
You feel helpless and you can't trust just the doctors. There has to be something we can do as parents. So I ask, "We aren't dirty people. My house is clean. What can we do on our end"?
The doctor says to keep people away from Parker. He also goes on to tell us that Parker is at risk for this type of infection for at least a year because of his age. We certainly aren't going to keep people away for a year. However, we are going to keep them away until he's cleared from his Neurosurgeon. If you show up at our house you will be greeted with a "Do Not Enter" sign on the door. We do not want to be here again in two weeks. It's a small sacrifice. As Parker's Head of Command I will enforce this recommendation until he's somewhat in the clear. #sorrynotsorry
He also goes on to tell us that they are going to use different sutures that decrease the risk of infection. Infants do not tolerate stitches being taken out well so they tend to use ones that dissolve naturally. Well, in this case we have to come back and get them taken out. Parker will be super excited I'm sure. Can't wait for that appointment!
So, I being super sassy say, "Make sure while you are taking all of the precautions in the OR that everyone who touches Parker's brain washes their hands."
He thought I was joking. So I gave him the notorious Caitlin, "do I look like I'm kidding" face.
It's strange to us that "now" all of these extra precautions are being taken. I know it was meant as a reassurance to us as parents, but really it made us wonder, why the hell didn't you take these precautions BEFORE ? Hello? Anyone?
The Neurosurgeons here wear camo patterned scrub caps. They have embroidery on the front and different flags representing countries on the side. I assume a flag for every member of the team. Pretty clever, though we don't really understand the camo. What they do not understand is that no amount of camo is going to hide them from me if this happens again. Clever,yes. Effective strategy for hiding from HydroMommies, nope.
In all seriousness the team is here is amazing. I know it kills our doctor that this happened to Parker, especially since this rarely has happened to him. He goes on to tell us that we actually caught the infection super early (thank goodness). The infection from his Cerebral Spinal Fluid really wasn't that bad.
Interesting. You mean you've seen worse! Parker had a 103 temp and was in so much pain!
The crazy part is that one of the members of the team told us not to come in. He said, and I quote, "Do not bring him in right now. Fevers will typically be higher if there is a shunt infection."
Obviously we took him in anyway. More often than not parents rely on doctors and trust their opinions-as you should. That's why they get paid the big bucks right? WRONG. If you, in your heart of hearts, believe that there is something wrong then just go. You are the boss, always. I am not sure how sick you would wait to take your child in. Parker was super sick and I can't believe that people wouldn't just go. However, when a doctor tells you not to worry, well, you tend to not worry. I have crazy gut feelings and drive Casey mad until he starts to worry too. Otherwise, we might have not worried and it would have been bad, very, very bad.
I think Casey and I talk about this very subject every single day. Do you know how hard it is going to be raising a son with Hydro? Every fever, vomit and continuous headache is going to result in a trip to the ER. Here's some Tylenol for that fever and headache. Nope. Here's some morphine for the shunt we just had to take out because it's infected or not working. Dang it! Oh Parker...so high maintenance. Just kidding! I do call him a Diva. He gets that from his dad.
It's funny because Parker won't cry a single tear over brain surgery, but he screams bloody murder when they take him temp...under his arm. Every morning we come in and he's surrounded by toys, Disney Junior full force and he is all snuggled in his Boppy sucking on a pacifier. He is nothing short of Mariah Carey. Diva.
Last night Casey and I were in the elevator having a chuckle over our nervous nelly Neurosurgeon. We are on brain surgery #3 and shunt #2. I asked Casey, "Do you think it's like a shunt sale?"
He looks at me and just smiles because he knows something stupid is about to follow.
"Like buy two get the third for free?"
Ooooh Caitlin. Blue Cross Blue Shield wishes. I will be sure to ask the Neurosurgeons before surgery.
And he thought I was kidding...The day of surgery (which for the record no one knows when this will be) I will remind the doctors to wash their hands, pray to the Neurosurgeon Gods that this does not happen again, ask about the buy 2 get 3rd for free, and for goodness sake give us that darn shunt ID card so Casey quits calling the manufactuers!
So, in a nutshell, we've been sitting here for over two weeks while Parker is getting pumped full of antibiotics to kill off this staff infection. Really, there isn't anything anyone can do. It's more of a waiting game to make sure everything, and I mean everything, is gone before they open him up again. Surgery has been pushed back a couple of times. No one is allowed to visit anymore. Makes it kind of lonely for us, but it's what is best for Sir Parks.
Two weeks later I see a familiar face creepin' in the hall. Luckily doors in the ICU are all glass. That is fortunate if you are the ultimate creeper like myself. It is rather unfortunate if you have to pick out a wedgie or make rude gestures to anyone that may have ticked you off. Not that I've attempted any of that... (daily).
I say to Casey, "He's here"!
Casey looks at me confused.
"Parker's Neurosurgeon is here! Finally!"
We turn around and he walks in. To be completely honest he walked in rather slowly. He seemed a little afraid or timid to come in our room. Let's be real. Parker got an infection that he more than likely acquired during surgery.
Do we blame you? A little bit. Did you save his life and take care of him. Yes! Was this a risk (though extremely unlikely) that you warned us about? Absolutely.
We knew this was a possibility. At the time it seemed unlikely, but nevertheless, a possibility.
He says, "So...I can't believe this situation."
Really. Tell me more about how you can't believe we are in this situation. How was your time out of the office? Great? Ours too...oh wait. We freaking LIVE here and have been scared out of our minds for two weeks!
We go over the story with what happened and he nods. He's clearly read over the notes. He then goes on to say, "This never happens. Like rarely ever happens to me. I do not have patients that get infections."
Casey and I both give him "deer in the headlights" stares.
"I know it's hard, but please trust me. We will take every precaution in the OR" he says.
NOW you are going to take every precaution. Cue verbal diarhhea...
"Yeah I do not really trust you at the moment. I trust you know what you are doing, but it's hard to trust that this won't happen again because our luck is awesome. When you tell me that this rarely happens in your OR it makes me even more afraid that there is something wrong with Parker's immune system."
He nods. If this happens again that is something that they would have to explore. Why can't we explore those things while we are here for a month? No clue. That is part of the medical system that annoys me.
You feel helpless and you can't trust just the doctors. There has to be something we can do as parents. So I ask, "We aren't dirty people. My house is clean. What can we do on our end"?
The doctor says to keep people away from Parker. He also goes on to tell us that Parker is at risk for this type of infection for at least a year because of his age. We certainly aren't going to keep people away for a year. However, we are going to keep them away until he's cleared from his Neurosurgeon. If you show up at our house you will be greeted with a "Do Not Enter" sign on the door. We do not want to be here again in two weeks. It's a small sacrifice. As Parker's Head of Command I will enforce this recommendation until he's somewhat in the clear. #sorrynotsorry
He also goes on to tell us that they are going to use different sutures that decrease the risk of infection. Infants do not tolerate stitches being taken out well so they tend to use ones that dissolve naturally. Well, in this case we have to come back and get them taken out. Parker will be super excited I'm sure. Can't wait for that appointment!
So, I being super sassy say, "Make sure while you are taking all of the precautions in the OR that everyone who touches Parker's brain washes their hands."
He thought I was joking. So I gave him the notorious Caitlin, "do I look like I'm kidding" face.
It's strange to us that "now" all of these extra precautions are being taken. I know it was meant as a reassurance to us as parents, but really it made us wonder, why the hell didn't you take these precautions BEFORE ? Hello? Anyone?
The Neurosurgeons here wear camo patterned scrub caps. They have embroidery on the front and different flags representing countries on the side. I assume a flag for every member of the team. Pretty clever, though we don't really understand the camo. What they do not understand is that no amount of camo is going to hide them from me if this happens again. Clever,yes. Effective strategy for hiding from HydroMommies, nope.
In all seriousness the team is here is amazing. I know it kills our doctor that this happened to Parker, especially since this rarely has happened to him. He goes on to tell us that we actually caught the infection super early (thank goodness). The infection from his Cerebral Spinal Fluid really wasn't that bad.
Interesting. You mean you've seen worse! Parker had a 103 temp and was in so much pain!
The crazy part is that one of the members of the team told us not to come in. He said, and I quote, "Do not bring him in right now. Fevers will typically be higher if there is a shunt infection."
Obviously we took him in anyway. More often than not parents rely on doctors and trust their opinions-as you should. That's why they get paid the big bucks right? WRONG. If you, in your heart of hearts, believe that there is something wrong then just go. You are the boss, always. I am not sure how sick you would wait to take your child in. Parker was super sick and I can't believe that people wouldn't just go. However, when a doctor tells you not to worry, well, you tend to not worry. I have crazy gut feelings and drive Casey mad until he starts to worry too. Otherwise, we might have not worried and it would have been bad, very, very bad.
I think Casey and I talk about this very subject every single day. Do you know how hard it is going to be raising a son with Hydro? Every fever, vomit and continuous headache is going to result in a trip to the ER. Here's some Tylenol for that fever and headache. Nope. Here's some morphine for the shunt we just had to take out because it's infected or not working. Dang it! Oh Parker...so high maintenance. Just kidding! I do call him a Diva. He gets that from his dad.
It's funny because Parker won't cry a single tear over brain surgery, but he screams bloody murder when they take him temp...under his arm. Every morning we come in and he's surrounded by toys, Disney Junior full force and he is all snuggled in his Boppy sucking on a pacifier. He is nothing short of Mariah Carey. Diva.
Last night Casey and I were in the elevator having a chuckle over our nervous nelly Neurosurgeon. We are on brain surgery #3 and shunt #2. I asked Casey, "Do you think it's like a shunt sale?"
He looks at me and just smiles because he knows something stupid is about to follow.
"Like buy two get the third for free?"
Ooooh Caitlin. Blue Cross Blue Shield wishes. I will be sure to ask the Neurosurgeons before surgery.
And he thought I was kidding...The day of surgery (which for the record no one knows when this will be) I will remind the doctors to wash their hands, pray to the Neurosurgeon Gods that this does not happen again, ask about the buy 2 get 3rd for free, and for goodness sake give us that darn shunt ID card so Casey quits calling the manufactuers!
Tuesday, April 22, 2014
Taming the Beast
You might think it's a little mean of me to refer to my child as "The Beast." For those of you who have been lucky enough to meet this little angel you know exactly what I'm talking about. Some might argue he should be referred to as an old man since he burps, farts and has no hair. I refer to him as "The Beast" because he is a grunting and eating machine. He is 4 months old and wears 9 month clothing. He is HUGE.
He has also picked up some strange habits while in the PICU. Most of them extremely odd and unpleasant. He is a TV junkie, loves his pacifier (which he would NEVER take for me at home), and something else completely out of the ordinary...
"Did he just pelvic thrust at me" one nurse asked.
"Yes. Yes he did. Apparantely Parker thinks he is Michael Jackson" I said.
Then he stuck out his tongue and pelvic thrusted at her.
I have no words. We will talk about that when we get home.
He is trying sooo hard to roll over. Of course the one time in his life when he isn't supposed to reach a milestone, he would. Little stinker. Parker is also extremely lazy these days. At home he was starting to hold his bottle. Now he just lays on the bed like a beached whale and let's everyone feed him while he watches the newest episode of Mickey Mouse Club House...while farting like an old man.
It's just extremely pleasant. I kid! I kid! It's funny! We get a lot of laughs from him. He always farts at the most random and awkward times. Like...when a Neuro Surgeon is examining him or doctors are doing rounds. One thing was never in question and that was Parker's ability to eat and pass gas.
When we got to the hospital Parker was a very sick baby. He wouldn't smile, eat or play. Well, after a good 3 days on his antibiotic cocktail he was feeling pretty awesome. Taming him has been rather challenging since he's confined to his crib. He wants OUT ! We are fortunate that he can't sit up on his own. Otherwise, children in his situation, would be sedated for weeks so they can't tamper with their ventric or "brain cord". Casey brought a lot of Parker's favorite toys to the hospital and after we steralized everything he's been playing away. He is such an angel and it warms my heart to see him play.
Parker has spent more time in the hospital than the average baby. Luckily for us, he really doesn't know it any different and has grown very comfortable in his surroundings. Plus, he gets more attention here than he can handle. He is such a ham and is spoiled rotten! I cannot speak highly enough of the nurses. They are seriously gifts. We of course have our favorite. She makes a very bad situation not so bad by being open, honest and genuine. Parker loves her! He smiles everytime he sees her and I don't feel as guilty if I need to step away for lunch or forbid a potty break. She is truly amazing and if she is reading this, thank you! You have no idea how grateful I am to you and I will never forget you, ever!
Days have come and gone and we've managed to stay as positive as we can. Easter was probably one of the worst days we've had here. Not because Parker was sick, but because he has spent yet another holiday in the hospital. It breaks my heart to know my family is 2 hours away eating, laughing and flying kites (we have done this as a HUGE family ever since I can remember). I want so badly for Parker to experience those moments I was lucky enough to have at his age. Instead, he had to sit in his hospital bed. I know I've said this a million times, but it's just so unfair!
Casey and I decided that we weren't ready to celebrate Easter. It's not fair to Parker and it's not fair to us. He doesn't know what Easter is yet and we want to make memories at home with him. Many people offered to bring Easter dinner to us, but if Parker has to sit in his bed, we won't enjoy it. I think that's what people who have never been in our situation don't understand. If he's not there with us, it doesn't help. It makes us more sad and angry at the situation. So we asked our families to hold off and we will celebrate the second he gets better.
After the visitors we had that day left, I was alone. Casey had no choice but go back home because of his work schedule on Monday. He also has so much to get ready for. We are still in the process of sanitizing our house through and through for our little guy. He will be quarantined for at least three weeks when we get home. No people and no germs!
When Parker got transferred to the NICU, I realized that sickness doesn't wait around for holidays. Parker spent his first Christmas in the hospital. I would never wish that for him again. Well, Easter night was a night I do not want to remember. There weren't any Easter Bunnies, jelly beans or colorful eggs. Just like Santa skipped over him on Christmas it seems the Easter Bunny did the same. The only thing left was the seriousness of our situation. When people stop by or call I am for one second taken away from what our life really is. Left alone, it's all too real to me.
I think. I think...a lot.
At about 8PM Parker fell asleep and I decided, I too, should get some rest. Tears immediately struck my eyes as I slid his door shut behind me. Leaving him to end yet another holiday on his own in this stinking hospital. The elevator was miles away and as I got there one of the Nurse Practicioners was also waiting. I didn't care. Tears continued to trickle. Crying in public is no longer an issue for me. I've sobbed in every public hallway in this hospital I swear. I walked to the cafeteria and the only thing available to me was chicken strips and cheese balls. I grabbed them and cried all the way to my room. I couldn't eat or sleep. I just sobbed. I sobbed because of our situation and I sobbed because I am sick and tired of leaving my sweet angel in his hospital bed. The empty carseat in my room is a constant reminder that he's not here with me.
Times like these I pray that Parker doesn't wake up and wonder, "Where is my Mommy?" It wouldn't surprise me if he did because sometimes I wake up from my nightmare and wonder where he is. Except, it's not a nightmare. It sure is real life and it sucks. I always try to hold him before I go off to bed so I can smell him on me. I feel homesick without him and his scent on my clothing helps keep him close to my heart.
I called my husband and cried to him to only realize the situation on his end was maybe even worse. I at least got to kiss Parker goodnight. He had to lay in a cold, empty house without his family, too.
Casey came back to us the next afternoon after his time at work. We managed to escape for dinner. It was once again a reminder that we had to leave our son in the hospital and see the rest of society enjoying their children at dinner. I see babies about Parker's age every time I go out. I see their Mommies and Daddies snuggling them and laughing. It breaks my heart. I am so jealous. Casey always says, "Be patient. Our turn is coming. I promise."
I want so badly to believe him. I have to believe him. This is what I need to keep going. The hope that we will be a "normal" family again, soon. The fear of Parker's diagnosis will never go away, though.
We eventually make our way back to the hospital to make sure Parker is in for the night and sleeping. We find our sweet angel sideways in his crib, so innocent and precious. He was smiling in his sleep having sweet dreams of pelvic thrusting and the hope that I someday introduce baby food because darn it mom I'm starving (clearly). After a quick chat with his night nurse we head for our room.
As we are walking down the hall we see several pictures of children lined up leading to the Pediatric Ward (I can only pray we are lucky enough to get to since it's considered better than the ICU we currently reside in). We start to read the pictures one by one. There are pictures of children lined up who have suffered beyond belief. Children who have the rarest diseases and have somehow managed to prosper and enjoy life.
Casey says, "Oh my gosh, look at this one. He has Hydrocephalus! Look at how normal he is and how he is smiling in this picture."
I read the entire article praying that he has a similar story to my sweet angel. His is worse. Not only does he have Hydrocephalus, but he has had more brain surgeries because of his Hydrocephalus than I can count. He also has Spina Bifida. Amazingly though, he is still smiling. He is a beautiful and inspiring little boy. We read on. Eventually we've read all of them and the very last one will stay with me forever. A mother was quoted in the article as saying that her daughter has suffered and unfortunately will be in pain for the rest of her life. However, what she said last struck me.
I looked at Casey as we are about out of fire to continue on with hope and healing for our son. I said to him hoping for a newfound spark to go on, "Parker will leave here better than when he came. Always remember that."
It might not be where we want him to be, but it will be better. I want to believe that and I have to believe that. I've said those words to myself a million times since yesterday.
He has also picked up some strange habits while in the PICU. Most of them extremely odd and unpleasant. He is a TV junkie, loves his pacifier (which he would NEVER take for me at home), and something else completely out of the ordinary...
"Did he just pelvic thrust at me" one nurse asked.
"Yes. Yes he did. Apparantely Parker thinks he is Michael Jackson" I said.
Then he stuck out his tongue and pelvic thrusted at her.
I have no words. We will talk about that when we get home.
He is trying sooo hard to roll over. Of course the one time in his life when he isn't supposed to reach a milestone, he would. Little stinker. Parker is also extremely lazy these days. At home he was starting to hold his bottle. Now he just lays on the bed like a beached whale and let's everyone feed him while he watches the newest episode of Mickey Mouse Club House...while farting like an old man.
It's just extremely pleasant. I kid! I kid! It's funny! We get a lot of laughs from him. He always farts at the most random and awkward times. Like...when a Neuro Surgeon is examining him or doctors are doing rounds. One thing was never in question and that was Parker's ability to eat and pass gas.
When we got to the hospital Parker was a very sick baby. He wouldn't smile, eat or play. Well, after a good 3 days on his antibiotic cocktail he was feeling pretty awesome. Taming him has been rather challenging since he's confined to his crib. He wants OUT ! We are fortunate that he can't sit up on his own. Otherwise, children in his situation, would be sedated for weeks so they can't tamper with their ventric or "brain cord". Casey brought a lot of Parker's favorite toys to the hospital and after we steralized everything he's been playing away. He is such an angel and it warms my heart to see him play.
Parker has spent more time in the hospital than the average baby. Luckily for us, he really doesn't know it any different and has grown very comfortable in his surroundings. Plus, he gets more attention here than he can handle. He is such a ham and is spoiled rotten! I cannot speak highly enough of the nurses. They are seriously gifts. We of course have our favorite. She makes a very bad situation not so bad by being open, honest and genuine. Parker loves her! He smiles everytime he sees her and I don't feel as guilty if I need to step away for lunch or forbid a potty break. She is truly amazing and if she is reading this, thank you! You have no idea how grateful I am to you and I will never forget you, ever!
Days have come and gone and we've managed to stay as positive as we can. Easter was probably one of the worst days we've had here. Not because Parker was sick, but because he has spent yet another holiday in the hospital. It breaks my heart to know my family is 2 hours away eating, laughing and flying kites (we have done this as a HUGE family ever since I can remember). I want so badly for Parker to experience those moments I was lucky enough to have at his age. Instead, he had to sit in his hospital bed. I know I've said this a million times, but it's just so unfair!
Casey and I decided that we weren't ready to celebrate Easter. It's not fair to Parker and it's not fair to us. He doesn't know what Easter is yet and we want to make memories at home with him. Many people offered to bring Easter dinner to us, but if Parker has to sit in his bed, we won't enjoy it. I think that's what people who have never been in our situation don't understand. If he's not there with us, it doesn't help. It makes us more sad and angry at the situation. So we asked our families to hold off and we will celebrate the second he gets better.
After the visitors we had that day left, I was alone. Casey had no choice but go back home because of his work schedule on Monday. He also has so much to get ready for. We are still in the process of sanitizing our house through and through for our little guy. He will be quarantined for at least three weeks when we get home. No people and no germs!
When Parker got transferred to the NICU, I realized that sickness doesn't wait around for holidays. Parker spent his first Christmas in the hospital. I would never wish that for him again. Well, Easter night was a night I do not want to remember. There weren't any Easter Bunnies, jelly beans or colorful eggs. Just like Santa skipped over him on Christmas it seems the Easter Bunny did the same. The only thing left was the seriousness of our situation. When people stop by or call I am for one second taken away from what our life really is. Left alone, it's all too real to me.
I think. I think...a lot.
At about 8PM Parker fell asleep and I decided, I too, should get some rest. Tears immediately struck my eyes as I slid his door shut behind me. Leaving him to end yet another holiday on his own in this stinking hospital. The elevator was miles away and as I got there one of the Nurse Practicioners was also waiting. I didn't care. Tears continued to trickle. Crying in public is no longer an issue for me. I've sobbed in every public hallway in this hospital I swear. I walked to the cafeteria and the only thing available to me was chicken strips and cheese balls. I grabbed them and cried all the way to my room. I couldn't eat or sleep. I just sobbed. I sobbed because of our situation and I sobbed because I am sick and tired of leaving my sweet angel in his hospital bed. The empty carseat in my room is a constant reminder that he's not here with me.
Times like these I pray that Parker doesn't wake up and wonder, "Where is my Mommy?" It wouldn't surprise me if he did because sometimes I wake up from my nightmare and wonder where he is. Except, it's not a nightmare. It sure is real life and it sucks. I always try to hold him before I go off to bed so I can smell him on me. I feel homesick without him and his scent on my clothing helps keep him close to my heart.
I called my husband and cried to him to only realize the situation on his end was maybe even worse. I at least got to kiss Parker goodnight. He had to lay in a cold, empty house without his family, too.
Casey came back to us the next afternoon after his time at work. We managed to escape for dinner. It was once again a reminder that we had to leave our son in the hospital and see the rest of society enjoying their children at dinner. I see babies about Parker's age every time I go out. I see their Mommies and Daddies snuggling them and laughing. It breaks my heart. I am so jealous. Casey always says, "Be patient. Our turn is coming. I promise."
I want so badly to believe him. I have to believe him. This is what I need to keep going. The hope that we will be a "normal" family again, soon. The fear of Parker's diagnosis will never go away, though.
We eventually make our way back to the hospital to make sure Parker is in for the night and sleeping. We find our sweet angel sideways in his crib, so innocent and precious. He was smiling in his sleep having sweet dreams of pelvic thrusting and the hope that I someday introduce baby food because darn it mom I'm starving (clearly). After a quick chat with his night nurse we head for our room.
As we are walking down the hall we see several pictures of children lined up leading to the Pediatric Ward (I can only pray we are lucky enough to get to since it's considered better than the ICU we currently reside in). We start to read the pictures one by one. There are pictures of children lined up who have suffered beyond belief. Children who have the rarest diseases and have somehow managed to prosper and enjoy life.
Casey says, "Oh my gosh, look at this one. He has Hydrocephalus! Look at how normal he is and how he is smiling in this picture."
I read the entire article praying that he has a similar story to my sweet angel. His is worse. Not only does he have Hydrocephalus, but he has had more brain surgeries because of his Hydrocephalus than I can count. He also has Spina Bifida. Amazingly though, he is still smiling. He is a beautiful and inspiring little boy. We read on. Eventually we've read all of them and the very last one will stay with me forever. A mother was quoted in the article as saying that her daughter has suffered and unfortunately will be in pain for the rest of her life. However, what she said last struck me.
I looked at Casey as we are about out of fire to continue on with hope and healing for our son. I said to him hoping for a newfound spark to go on, "Parker will leave here better than when he came. Always remember that."
It might not be where we want him to be, but it will be better. I want to believe that and I have to believe that. I've said those words to myself a million times since yesterday.
Saturday, April 19, 2014
ShuntNado
"Excuse me I have to tell you something. I do not want you to panic."
My child is in the ICU. Anything you tell me at this point-I'm probably going to panic. I immediately assume she has the results of some horrible test result that we haven't heard of yet.
So I say, "What's going on?"
"Umm...we were just issued a tornado warning and we have to close all the blinds on the windows. Don't worry though. Parker is mobile. We will just grab him and run for the stairs."
Are. You. Kidding. Me. At this point I am fairly certain a tornado is going to crash through our room. Gosh darn it. Immediatlely I start thinking of our exit strategy. I will grab the brain fluid bag because I am pretty sure that's important...the IVs can wait. I know how to unhook those. I will grab bottles, too. He cannot wait for food if we are trapped in a stairwell. Diapers might be a good idea for everyone involved...
When it rains it pours, literally. Good news, the tornado did not land near the hospital. Mother Nature is clearly on crack because the next day after the tornado warning, it snowed. Pull it together Mother Nature. We do not have time for this crap.
The day after Parker was admitted into the hospital and had his shunt removed he was in an intense amount of pain. It was absolutely horrible to witness. He would cry nonstop and we had to unfortunately give him morphine, which consequently, gave him red blotches all over his chest and belly. The morphine didn't even really do the trick. The blood cultures from our first trip to the ER in Clinton showed that he did have bacteria in his blood. Cultures from Iowa City showed no bacteria. After they realized his blood was good to go it was safe to put in a PICC line so he could be "poke free" mostly.
I bawled my eyes out when the Nurse Practicioner came to put the PICC in. I do not disagree that she is super talented and can do this with her eyes closed. When I started crying I think I slightly offended her. Her ability was never in question. It was the fact that my sweet angel was about to be poked and in pain, yet again. I would have to sit there and let this pain continue for him when he was feeling so sick. They sedated him a bit (thank goodness) and for the next hour they worked on getting the line in. It was successful and will make the administration of his antibiotic doses a lot easier. IVs in babies only last a couple of days. Now we won't have to worry about that.
That baby was spiking fevers close to 103. We would put cool cloths on his forehead. When they were pulled off the cloth would literally be hot. It was absolutely awful. Mommy is supposed to take the pain away with a simple kiss of his "owwee". This Mommy could do nothing to make the pain go away and it is quite possibly one of the worst feelings in the world. That was one of the reasons I cried when the NP came to put in the PICC line. It's just this feeling of helplessness. Really quite overwhelming.
This particular Hydro Journey has been, without a doubt, one of the most trying times in my entire life. Just when things start to look up, we get slammed back down again. At this point Casey and I celebrate little victories. For instance, a parking spot close to the walkway. That right there is a guaranteed high-five! We also celebrate knowing that our sweet angel's bacteria is the "non-resistent" kind. The doctor looks at us and says, "Umm, hello your child is still in the PICU and still has a life threatening bacteria."
Cue Verbal Diarrhea..."Listen here buddy. You just told us he has the better of the two. That may not mean a lot to you because obviously you've never been in our situation. It means a lot to us. We take what we can get. Believe me no one knows better than we do where he is at. We get it. We live this nightmare over and over again every single day."
Get out of here unless you plan on changing his dirty diaper.
You better believe we high five over pees, poops and no vomiting. We celebrate giggles, laughs, and kicks! Front row parking spot? Quick line at the coffee cart? No Fever? Buffalo Chicken Bites in the caf? All high fives in our book! Do not rain on our parade. Since Mother Nature is clearly still on crack she has that covered.
After several days on the antibiotic Parker was finally starting to feel better. He started eating little amounts on the hour and next thing we knew he was demanding his full feeding schedule. That was all great news. His blood was clear of bacteria, but his Cerebral Spinal Fluid or CSF was still showing bacteria. Just when we thought we were going to get a surgery date we were told that after several days of negative cultures of his CSF they found bacteria.
Seriously.
It's terrifying! Are the antibiotics not working? He doesn't seem sick... Of course he didn't seem sick to us before until he started throwing up everywhere. Clinically we are being told he's great. It's just that brain of his that is causing so much trouble. Casey and I do not want to rush his treatment. I will stay here for three months if it meant he wouldn't be in this situation again. Our biggest fear is that they rush the treatment, operate, and bacteria show up.
We had a nice chat with his doctor. She knows my intense level of anxiety for "All Things Parker." I love this little boy to pieces and she knows that because she sees me in here day in and day out. She sees my attempts at snuggling with him when I can't easily pick him up. She is the doctor that encourages Parker & Mommy snuggle time every day. The fact that Parker has both of his parents here a majority of the time does not go unnoticed. We are involved as much as possible when it comes to his daily cares: bath, feeding, diaper, play, napping, etc.You never know when those little things in life can get taken away from you. Cherish every single moment, even the poops. :-)
Casey is trying to go back and forth from work to the hospital as much as he can. It's absolutley exhausting for him no doubt. However, we are not naive enough to believe this won't or can't happen again. There is always a possibility that we can end up in this room again in just a couple of weeks. No one has control over this situation and it's best to save time and not waste it in one incident.
Parker demands a little more care than the average baby. A lot of people aren't sure what to look for exactly when he has "flare ups". Could this vomit be hydro related? Is he crabbier than usual? Really, it's hard to say. When this happened...again...Casey and I decided it would be best that I stay home with him. The poor baby cannot get ahead because for the past two months he's been forced to lay on his back. His little head is so big and we can't get his neck strength up. He is definitely going to need some TLC after this ordeal. I think I'm pretty keen on what he needs and when he's sick, or just acting "funny". We were very fortunate that our mom's offered to stay with him when I went back to work. There isn't anything better than a Grandma's love. Maybe someday he will get to spend some time with his Grandma's again, but for now, he is going to stay home with Mommy.
The Mommy guilt that I often felt going back to work was full force when he got the infection. Every moment with him is so precious. Nothing else really seems to matter, especially when he requires so much attention and care. I think he will be happy to at least spend a while with Mommy.
My husand and I have finally come at peace with the situation. We have essentially stopped and we are smelling the roses. Our life is now running what seems to be in slow motion. There isn't a worry about next week or next year. Everything we do is for our son. We are his biggest advocates, his voice. It's hard to stop worrying and let God execute his plan for you and your children. We've somehow managed to do it and wouldn't you know, our life is a little easier to deal with. Looking back at our misfortunes we realize how many blessings have truly come out of them. Life is precious and the moments we have with Parker are what make us get up every morning and relive this nightmare over and over again.
Somewhere along this journey I lost my faith. I mean, lost it. When Casey would ask us to pray I wouldn't pray. I wouldn't even close my eyes. I. Was. Mad. What kind of God makes children sick? I have never been angrier at God than I was when Parker got sick. My son was diagnosed with in incurable brain disease. There is NO cure. But you know what...God gave me an amazing little boy who blesses everyone he meets. He is a walking miracle. He is my miracle. My angel baby, sent from God. He saved me just as much as I saved him. He helped renew my faith.
I had my blinders on for a while, but they are off. God and I - we're good.
My child is in the ICU. Anything you tell me at this point-I'm probably going to panic. I immediately assume she has the results of some horrible test result that we haven't heard of yet.
So I say, "What's going on?"
"Umm...we were just issued a tornado warning and we have to close all the blinds on the windows. Don't worry though. Parker is mobile. We will just grab him and run for the stairs."
Are. You. Kidding. Me. At this point I am fairly certain a tornado is going to crash through our room. Gosh darn it. Immediatlely I start thinking of our exit strategy. I will grab the brain fluid bag because I am pretty sure that's important...the IVs can wait. I know how to unhook those. I will grab bottles, too. He cannot wait for food if we are trapped in a stairwell. Diapers might be a good idea for everyone involved...
When it rains it pours, literally. Good news, the tornado did not land near the hospital. Mother Nature is clearly on crack because the next day after the tornado warning, it snowed. Pull it together Mother Nature. We do not have time for this crap.
The day after Parker was admitted into the hospital and had his shunt removed he was in an intense amount of pain. It was absolutely horrible to witness. He would cry nonstop and we had to unfortunately give him morphine, which consequently, gave him red blotches all over his chest and belly. The morphine didn't even really do the trick. The blood cultures from our first trip to the ER in Clinton showed that he did have bacteria in his blood. Cultures from Iowa City showed no bacteria. After they realized his blood was good to go it was safe to put in a PICC line so he could be "poke free" mostly.
I bawled my eyes out when the Nurse Practicioner came to put the PICC in. I do not disagree that she is super talented and can do this with her eyes closed. When I started crying I think I slightly offended her. Her ability was never in question. It was the fact that my sweet angel was about to be poked and in pain, yet again. I would have to sit there and let this pain continue for him when he was feeling so sick. They sedated him a bit (thank goodness) and for the next hour they worked on getting the line in. It was successful and will make the administration of his antibiotic doses a lot easier. IVs in babies only last a couple of days. Now we won't have to worry about that.
That baby was spiking fevers close to 103. We would put cool cloths on his forehead. When they were pulled off the cloth would literally be hot. It was absolutely awful. Mommy is supposed to take the pain away with a simple kiss of his "owwee". This Mommy could do nothing to make the pain go away and it is quite possibly one of the worst feelings in the world. That was one of the reasons I cried when the NP came to put in the PICC line. It's just this feeling of helplessness. Really quite overwhelming.
This particular Hydro Journey has been, without a doubt, one of the most trying times in my entire life. Just when things start to look up, we get slammed back down again. At this point Casey and I celebrate little victories. For instance, a parking spot close to the walkway. That right there is a guaranteed high-five! We also celebrate knowing that our sweet angel's bacteria is the "non-resistent" kind. The doctor looks at us and says, "Umm, hello your child is still in the PICU and still has a life threatening bacteria."
Cue Verbal Diarrhea..."Listen here buddy. You just told us he has the better of the two. That may not mean a lot to you because obviously you've never been in our situation. It means a lot to us. We take what we can get. Believe me no one knows better than we do where he is at. We get it. We live this nightmare over and over again every single day."
Get out of here unless you plan on changing his dirty diaper.
You better believe we high five over pees, poops and no vomiting. We celebrate giggles, laughs, and kicks! Front row parking spot? Quick line at the coffee cart? No Fever? Buffalo Chicken Bites in the caf? All high fives in our book! Do not rain on our parade. Since Mother Nature is clearly still on crack she has that covered.
After several days on the antibiotic Parker was finally starting to feel better. He started eating little amounts on the hour and next thing we knew he was demanding his full feeding schedule. That was all great news. His blood was clear of bacteria, but his Cerebral Spinal Fluid or CSF was still showing bacteria. Just when we thought we were going to get a surgery date we were told that after several days of negative cultures of his CSF they found bacteria.
Seriously.
It's terrifying! Are the antibiotics not working? He doesn't seem sick... Of course he didn't seem sick to us before until he started throwing up everywhere. Clinically we are being told he's great. It's just that brain of his that is causing so much trouble. Casey and I do not want to rush his treatment. I will stay here for three months if it meant he wouldn't be in this situation again. Our biggest fear is that they rush the treatment, operate, and bacteria show up.
We had a nice chat with his doctor. She knows my intense level of anxiety for "All Things Parker." I love this little boy to pieces and she knows that because she sees me in here day in and day out. She sees my attempts at snuggling with him when I can't easily pick him up. She is the doctor that encourages Parker & Mommy snuggle time every day. The fact that Parker has both of his parents here a majority of the time does not go unnoticed. We are involved as much as possible when it comes to his daily cares: bath, feeding, diaper, play, napping, etc.You never know when those little things in life can get taken away from you. Cherish every single moment, even the poops. :-)
Casey is trying to go back and forth from work to the hospital as much as he can. It's absolutley exhausting for him no doubt. However, we are not naive enough to believe this won't or can't happen again. There is always a possibility that we can end up in this room again in just a couple of weeks. No one has control over this situation and it's best to save time and not waste it in one incident.
Parker demands a little more care than the average baby. A lot of people aren't sure what to look for exactly when he has "flare ups". Could this vomit be hydro related? Is he crabbier than usual? Really, it's hard to say. When this happened...again...Casey and I decided it would be best that I stay home with him. The poor baby cannot get ahead because for the past two months he's been forced to lay on his back. His little head is so big and we can't get his neck strength up. He is definitely going to need some TLC after this ordeal. I think I'm pretty keen on what he needs and when he's sick, or just acting "funny". We were very fortunate that our mom's offered to stay with him when I went back to work. There isn't anything better than a Grandma's love. Maybe someday he will get to spend some time with his Grandma's again, but for now, he is going to stay home with Mommy.
The Mommy guilt that I often felt going back to work was full force when he got the infection. Every moment with him is so precious. Nothing else really seems to matter, especially when he requires so much attention and care. I think he will be happy to at least spend a while with Mommy.
My husand and I have finally come at peace with the situation. We have essentially stopped and we are smelling the roses. Our life is now running what seems to be in slow motion. There isn't a worry about next week or next year. Everything we do is for our son. We are his biggest advocates, his voice. It's hard to stop worrying and let God execute his plan for you and your children. We've somehow managed to do it and wouldn't you know, our life is a little easier to deal with. Looking back at our misfortunes we realize how many blessings have truly come out of them. Life is precious and the moments we have with Parker are what make us get up every morning and relive this nightmare over and over again.
Somewhere along this journey I lost my faith. I mean, lost it. When Casey would ask us to pray I wouldn't pray. I wouldn't even close my eyes. I. Was. Mad. What kind of God makes children sick? I have never been angrier at God than I was when Parker got sick. My son was diagnosed with in incurable brain disease. There is NO cure. But you know what...God gave me an amazing little boy who blesses everyone he meets. He is a walking miracle. He is my miracle. My angel baby, sent from God. He saved me just as much as I saved him. He helped renew my faith.
I had my blinders on for a while, but they are off. God and I - we're good.
Sunday, April 13, 2014
Less Than 10%...REALLY!
After about 2 hours of sleep Casey and I made our way to our sweet baby. He was resting somewhat comfortably in his ginormous crib. We knew one thing for sure. He had a shunt infection and they are extremely dangerous. You do not mess with infections in your cerebral spinal fluid.
Here are some facts about Parker's infection:
1. Parker contracted Staff Aureus
2. Staff Aureus is on everyone's skin
3. 30% of healthy people carry Staff Aureus and have no symptoms
4. Staff Aureus is super sneaky and gets in through open wounds through air droplets or direct contact with someone contaminated from the bacteria
5. Parker could have given it to himself (ironic)
6. Less than 10% of patients contract an infection. Naturally, Parker would. :-/
Neuro Surgeons have told us that when people with shunts do contract an infection it usually looks like this. At the end of the day he more than likely got it from the hospital. You put him at risk for infection when he has surgery, but without the surgery he wouldn't have lived. It's a no brainer when you think about it. In life we take all kinds of risks. This risk saved Parker's life ultimately.
Bacteria entered Parker's body and grabbed on to the shunt. Apparantely Staff Aureus tends to cling to plastic and wouldn't you know - Parker's shunt was plastic. They quickly decided to put Parker on an Antibiotic Cocktail that would consist of 4 different medicines. Before they knew what kind of bacteria was growing the mixture of this particular cocktail would ensure it wouldn't grow further (hopefully) and give his body a chance to start to fight.
So, if the cocktail fights off the bacteria why did they have to remove the shunt? Antiobiotics only kill bacteria in living organisms. Since last time we checked the shunt didn't have a heart beat they had to remove it knowing the bacteria would continue to cling on for dear life. When they are ready to put in a new shunt they will place it on the opposite side in clean uninfected brain tissue. So, he will have two new scars to match his old ones. Lord knows what he will come up with when people ask him about them. With Casey's help I'm sure it will be funny.
They aren't absolutely certain where the bacteria started. He had two incisions - brain and belly. His belly was extremely agitated to the point where you would think he had a ruptured appendix when doctors examined him in the ER. So, my gut tells me something got in the belly and made it's way up to the brain. His incisions always looked great. Never infected or red. Seriously we caught this fairly quickly, thank the Lord.
The Infections Disease specialist visits us, daily. He is a plethera of information. We grill him so now he knows to just come on in and sit on the couch. Very wise that specialist. He knows a thing or two about germs, obviously, and has yet to shake our hands! He does not mess around! The specialist explained that there really wasn't anything we could have done to prevent it and it could happen again - terrifying. I asked questions like, "Should I like sanitize my entire house?"
He replied, "Nope."
In situations like this you would think sanitizing everything would be required. Apparantely it makes absolutely no difference. Just know that if you visit Parker you will be required to sanitize your hands. Even when we go home. Otherwise you will not be allowed to enter. I think I will have signs printed for our door. Because this bacteria is airborne - if you are coughing, sneezing or spitting around my child I will smack you. Shoulda had a V8 style!
At this point Parker has been in the hospital for 3 days. His fever has gotten as high as 103, which is not good. His little cheeks are chapped and red. His lips are also chapped. Poor little baby. Neuro kids tend to have high fevers. Messing with their little brains causes that. On top of that he also has one heck of an infection so it's a lot going on in that little body of his. Every time I sit and reflect on what's going on with him I am overwhelmed with his strength at such a young age. I complain when I have a migraine or three stitches from getting a mole removed from my leg. Seriously get over it. The only person who can relate to Parker is his aunt. She has beem through icky brain stuff too.
His fever curve is an indication on his infection and how he's responding to treatment. At this point we've been told he will need antibiotics for at least two weeks and then they will discuss if they should move further with the shunt surgery. At the end of the day we are now practically living in Iowa City so it doesn't matter. The hospital has great resources and hotel discounts for people in our position. We pled our case to the hospital hotel and hopefully we can get in there in a couple weeks. NICU and PICU parents are highest priority for the rooms since our stays are longest. Casey is more than likely going to be going back and forth a couple times a week so when I am here alone I'd definitely feel safer if I could stay onsite.
One of the toughest things about Parker's situation right now is that I can't hold him. He has an external cathedar draining his brain fluid into a little bag. The device on the outside has to remain level with his ear. If it's not then all that fluid will either go back into his head or come rushing out. He looks at me with those baby blues with his arms out and I know he just wants his Momma to pick him up and snuggle him. Like I said earlier, I've gotten pretty good at being in his crib so he still gets contact with me. That and I kiss him 3984384738473 times a day. Nothing can replace a snuggle with your baby. Absolutley nothing. When I am not at his side in the hospital I have severe anxiety. At least his babysitters know CPR, though...
Even with our situation I took holding him and snuggling with him for granted. Now I feel so guilty for those times when I didn't just stop what I was doing and pick him up when he was fussy. It's true, the dishes, laundry, shopping, etc. can all wait. I will never get those moments back with him. Do not take one moment with your children for granted. It can change in an instant. I still feel that emptiness in my heart even though I can touch and see him.
I wouldn't wish this on any mother. Nothing pains me more than seeing mothers out with their healthy babies. I turn on Facebook and I immediately see posts of everyone's children enjoying visiting the Easter Bunny or playing outside. It's an intense pain unlike any other. I am jealous. I am angry. I am heartbroken. It always goes back to the "why us" and I can't do that. Being like that does absolutely nothing for Parker. This poor baby has yet to spend a holiday at home and it looks like we will be celebrating his 4th month "birthday" just like his 3rd. In the hospital. Hopefully my angel can see the Easter Bunny next Sunday. I am sure we can arrange that. After all, he is unfortunately joined by 100s of other sick kids. Illness doesn't wait around for holidays or milestones to be over before it rears it's ugly head.
Here are some facts about Parker's infection:
1. Parker contracted Staff Aureus
2. Staff Aureus is on everyone's skin
3. 30% of healthy people carry Staff Aureus and have no symptoms
4. Staff Aureus is super sneaky and gets in through open wounds through air droplets or direct contact with someone contaminated from the bacteria
5. Parker could have given it to himself (ironic)
6. Less than 10% of patients contract an infection. Naturally, Parker would. :-/
Neuro Surgeons have told us that when people with shunts do contract an infection it usually looks like this. At the end of the day he more than likely got it from the hospital. You put him at risk for infection when he has surgery, but without the surgery he wouldn't have lived. It's a no brainer when you think about it. In life we take all kinds of risks. This risk saved Parker's life ultimately.
Bacteria entered Parker's body and grabbed on to the shunt. Apparantely Staff Aureus tends to cling to plastic and wouldn't you know - Parker's shunt was plastic. They quickly decided to put Parker on an Antibiotic Cocktail that would consist of 4 different medicines. Before they knew what kind of bacteria was growing the mixture of this particular cocktail would ensure it wouldn't grow further (hopefully) and give his body a chance to start to fight.
So, if the cocktail fights off the bacteria why did they have to remove the shunt? Antiobiotics only kill bacteria in living organisms. Since last time we checked the shunt didn't have a heart beat they had to remove it knowing the bacteria would continue to cling on for dear life. When they are ready to put in a new shunt they will place it on the opposite side in clean uninfected brain tissue. So, he will have two new scars to match his old ones. Lord knows what he will come up with when people ask him about them. With Casey's help I'm sure it will be funny.
They aren't absolutely certain where the bacteria started. He had two incisions - brain and belly. His belly was extremely agitated to the point where you would think he had a ruptured appendix when doctors examined him in the ER. So, my gut tells me something got in the belly and made it's way up to the brain. His incisions always looked great. Never infected or red. Seriously we caught this fairly quickly, thank the Lord.
The Infections Disease specialist visits us, daily. He is a plethera of information. We grill him so now he knows to just come on in and sit on the couch. Very wise that specialist. He knows a thing or two about germs, obviously, and has yet to shake our hands! He does not mess around! The specialist explained that there really wasn't anything we could have done to prevent it and it could happen again - terrifying. I asked questions like, "Should I like sanitize my entire house?"
He replied, "Nope."
In situations like this you would think sanitizing everything would be required. Apparantely it makes absolutely no difference. Just know that if you visit Parker you will be required to sanitize your hands. Even when we go home. Otherwise you will not be allowed to enter. I think I will have signs printed for our door. Because this bacteria is airborne - if you are coughing, sneezing or spitting around my child I will smack you. Shoulda had a V8 style!
At this point Parker has been in the hospital for 3 days. His fever has gotten as high as 103, which is not good. His little cheeks are chapped and red. His lips are also chapped. Poor little baby. Neuro kids tend to have high fevers. Messing with their little brains causes that. On top of that he also has one heck of an infection so it's a lot going on in that little body of his. Every time I sit and reflect on what's going on with him I am overwhelmed with his strength at such a young age. I complain when I have a migraine or three stitches from getting a mole removed from my leg. Seriously get over it. The only person who can relate to Parker is his aunt. She has beem through icky brain stuff too.
His fever curve is an indication on his infection and how he's responding to treatment. At this point we've been told he will need antibiotics for at least two weeks and then they will discuss if they should move further with the shunt surgery. At the end of the day we are now practically living in Iowa City so it doesn't matter. The hospital has great resources and hotel discounts for people in our position. We pled our case to the hospital hotel and hopefully we can get in there in a couple weeks. NICU and PICU parents are highest priority for the rooms since our stays are longest. Casey is more than likely going to be going back and forth a couple times a week so when I am here alone I'd definitely feel safer if I could stay onsite.
One of the toughest things about Parker's situation right now is that I can't hold him. He has an external cathedar draining his brain fluid into a little bag. The device on the outside has to remain level with his ear. If it's not then all that fluid will either go back into his head or come rushing out. He looks at me with those baby blues with his arms out and I know he just wants his Momma to pick him up and snuggle him. Like I said earlier, I've gotten pretty good at being in his crib so he still gets contact with me. That and I kiss him 3984384738473 times a day. Nothing can replace a snuggle with your baby. Absolutley nothing. When I am not at his side in the hospital I have severe anxiety. At least his babysitters know CPR, though...
Even with our situation I took holding him and snuggling with him for granted. Now I feel so guilty for those times when I didn't just stop what I was doing and pick him up when he was fussy. It's true, the dishes, laundry, shopping, etc. can all wait. I will never get those moments back with him. Do not take one moment with your children for granted. It can change in an instant. I still feel that emptiness in my heart even though I can touch and see him.
I wouldn't wish this on any mother. Nothing pains me more than seeing mothers out with their healthy babies. I turn on Facebook and I immediately see posts of everyone's children enjoying visiting the Easter Bunny or playing outside. It's an intense pain unlike any other. I am jealous. I am angry. I am heartbroken. It always goes back to the "why us" and I can't do that. Being like that does absolutely nothing for Parker. This poor baby has yet to spend a holiday at home and it looks like we will be celebrating his 4th month "birthday" just like his 3rd. In the hospital. Hopefully my angel can see the Easter Bunny next Sunday. I am sure we can arrange that. After all, he is unfortunately joined by 100s of other sick kids. Illness doesn't wait around for holidays or milestones to be over before it rears it's ugly head.
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