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!
Wednesday, April 23, 2014
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.
Saturday, April 12, 2014
Hydro Journey Round #3 - Ding Ding!
Our last experience in the ER in Iowa City was definitely brief and oddly enough pleasing. We were there for maybe two hours before we knew what was wrong with our sweet baby and what they were going to do about it. I could only wish that was the case this time.
We were in the ER for a while. Because Parker is technically a Neuro Surgeon baby. There is a level of complication when it comes to care. Casey called a Neuro Surgeon resident before our pediatric appointment. He told us not to come in. He was "fine." Umm...try again fella. Bringing him anyway. I swear to God we should get a discount for doing diagnostics before they do. It just goes to show that no matter how much they may know, you are always going to know your child better.
Upon arrival the ER doctor was very thorough. He was no stranger to the shunt scene and I could see in his face that he too believed it was a shunt infection. This was definitely not his first rodeo and he immediatley consulted neuro surgery to do a shunt tap.
Ahh a shunt tap. Ever heard of a spinal tap? Well, lucky for us a shunt gets the same fluid a spinal tap does with way less pain. However, if you put a needle in it you are taking a risk of contamination and malfunction when there may be absolutely nothing wrong with it. The ER doctor was willing to take that risk and the Neuro Surgeon was not quite there yet.
So we repeated a lot of the tests we did the prior day to only learn those too were normal. Naturally, the shunt was working. Casey and I always thought if something were to go wrong, it would be that darn shunt malfunction and that was the worst thing that could happen. I do recall our surgeon telling us immediately after surgery that the risk of a shunt infection is extremely rare, but shunt malfunction is higher. So with our odds we will be here in a month with that issue.
I do not know what it is, but for some reason Parker cannot catch a break in any way, shape or form. Whenever someone tries to give him an IV it turns into the worst experience they've ever had. He is so chubby that they can never find a vein. This time, he was chubby and dehydrated so locating a vein was nearly impossible. It's so painful to watch that we had to sit in a lounge for three 45 minute IV insertion attempts. I could still hear my angel screaming and of course that is horrible.
Once again, I know my child and I told the nurse during her first failed attempt that they always find a vein in his left foot. Every. Single. Time. I also told her to call the flight NICU RN. She is one of the best nurses I have ever met in my entire life. This lady puts IVs in the tiniest of babies IN THE AIR. Love the crap out of her and her ability to not torture my child when he needs an IV. I didn't know if she was on call, but if she was, get her down here and she'll get to business.
Three attemps later they called her. She remembered us and immediately took sympathy in our situation. She has also come by and visited us. Like I said, love her to death.
After we basically exhausted all tests the Neurosurgeon decided he was ready to tap the shunt. The fluid came out clear, which was good. He came back about 30 minutes later and told us that the fluid contained bacteria and they were prepping an operating room to remove the shunt and insert an external catheder, immediately.
All in the same moment the ER doctor and the Neurosurgeon started arguing because Parker had been given an extremely low dose of morphine. The ER doctor was just trying to be compassionate and give that sweet baby a break from his pain, seeing how he had been in it for over a day. The Neurosurgeon wanted him to be fully alert to assess him before surgery. At the end of the day the Neurosurgeon asked him to step outside and the ER doctor quickly obliged. Did I mention the ER doctor was about double the size of the Neurosurgeon? Place your bets! Though the Neurosurgeon ultimately won the Battle of Morphine 2014 he did not have the guts to chat with the ER doctor we later learned. He was a no show. I have to giggle because he knew he was smaller and didn't have a chance!
I was sobbing because it was all just too much. My poor baby is suffering. Why does he have to continue to suffer? Why are these doctors arguing and gosh darn it why can't we just catch a break already! I was so worked up I do not even remember much after I knew he was going to be taken away from my arms, yet again, for brain surgery.
They reversed the effects of the morphine, somehow, and both doctors pled their cases to Casey and I. At the end of the day, though some might argue it was inappropriate to argue like that in front of us, I am happy they did. I am so happy that the doctors here feel passionate enough to do that. They care about my son so much and only want what's best. I am grateful for the hands and knowledge of these doctors that treat my sweet angel. Some are more compassionate than others, but at the end of the day, they all work their butts off to make him better.
When social workers are called you know it's getting serious. The social worker that accompanied us during our Hydro diagnosis came into the room again looking gloom. She told us that we would walk Parker to the operating room and she would take us to the intensive care waiting room while the operation was underway. As you may remember my husband walked Parker to the operating room the first time because I am a big ole wiener. This time it happeneed so fast I didn't have a chance to think it over.
Next thing I know they are pushing my sweet baby in that big ole bed to the operating room and we are following quickly. Neuro Surgeons are extremely serious people and thank goodness they are! We've had several doctors tell us that something happens to Neuro Surgeons in med school. They kind of lose all personality and are very serious beings.
As we are sitting in the elevator, and I am sobbing, the Neuro Surgeon looks over at me and says, "Well, I told the ICU they will know who Parker is."
I looked at him puzzled.
He then says, "I told them he is the cutest little baby with beautiful blue eyes."
Of course I started sobbing again and tears are forming as I recall the conversation. This doctor was getting soft to us, after all, we were an anomoly. Honestly, I didn't know he had it in him, but for Parker, I am so glad he was soft. You know you are a rare case when every doctor you meet says, "Sorry it's just bad luck." I have been told that since I had him. SICK OF the bad luck already.
Parker went into surgery at 11PM. The hospital was literally a ghost town, which was good since I was a hot mess. Snot was running down my face and I was gasping-borderline hyperventilating. Yep, I was that mom. We walked him into the actual hallway of the operating room. Serious business those hallways. Doctors were scrubbed up and two of them approached Casey and I. The anesthesiologists. They asked us several questions about our history of being put under and Parker's since this wasn't his first time. They told me he would be taken care of and the social worker ushered us.
At this point my world was spinning. I could see the operating rooms - not too far away. I wanted to pick up my sweet angel one last time before they took him but I couldn't move.
I do not know why, but I am always slightly offended when someone who does not even know my son, tells me they will take good care of him. First of all, this is not helping and second of all, I do not believe you. Umm...last time I checked I was told he would be just fine and here we are 3 WEEKS LATER! I am terrified! He is going to wake up and not know where the heck he is and who you are and I cannot be there. I am leaving him to be terrified and I feel like a horrible mother. I feel helpless and have lost any little bit of control I had.
Words cannot express how I felt at that moment. It never gets easier. When Parker is 37 it will not be any easier. As I walked away from my son I knew there was a possibility I would never see him again. I suddenly thought of his smile and recent spouts of giggles. Suddenly I could smell him as if I was holding him in my arms. I realized that this little man had my entire heart and I would give anything and I mean anything to take all of his pain away. He is a part of me and I have always felt this deep connection to him. When he goes into surgery I literally feel like a piece of me is dying. It's suddenly hard to breath. Tears are streaming down my cheeks so fast that I cannot see.
Casey takes my hand and we leave our sweet angel with the doctors.
The social worker leads us to our waiting room and we sit.
She asks, "Do you need anything else?"
Immediately the smart mouth in me thinks, "Umm...yeah. If you would happen to have a Xanax and a Martini that would be great. Oh yeah, and a miracle too. That would be helpful".
I really have to watch myself here. Normally I am pretty self-contained, unless I am comfortable around you. Then I would say I am pretty sassy. Whenever I am at this hospital with Parker whatever smart mouth thing I'm thinking quickly becomes verbal diarrhea. I have IBS of the mouth and just like the butt IBS it's not pretty and super unexpected. Find your nearest bathroom!! I will make no apologies for my verbal diarrhea. It's something Casey and I can chat about later when we need a good laugh and are delirious from lack of sleep. I love when Casey and I can laugh so hard about the dumbest things I say or do when we are in complete delirian. Absolutely love it!
We are accompanied by other praying families. Praying for their children who are having surgeries or are in comas. Pediatric Intensive Care waiting rooms are a very gloom and doom place to be. There are no smiles or laughs. Just solemn conversation. I was accompanied by other mothers. They too had a piece of their heart on an operating room table. Their fears were my fears and we all gave each other the same sympathetic look. You can't be with your babies at all times and sometimes you have to trust that they will be okay, but sometimes, that just isn't the case and as a mother in an ICU waiting room you know that. It's scary as hell frankly.
Casey and I sat and waited for what seemed like hours. They told us he would be done in three hours. One hour later a surgeon, who we have never seen before, comes to brief us. It's like this happens in slow motion. The surgeon approaches us and I am like, it's been an hour. Oh my god he didn't make it. It's only been an hour. Turns out everything went wonderfully and Parker was already in recovery. They took out the infected shunt. A couple moments later a nurse came by to take us to his room.
This was a scene that unfortunately was not new to us. There was our sweet angel sleeping in an oversized crib. For those of you who know me personally you aren't going to be surprised by this next comment. I have often pondered several ways to get into that crib with him. I just want to lay in there and snuggle with my baby. Nothing weird about that right? I'm not looking to wear footie pajamas or anything. This is NOT the next TLC special or strange addiction. Seriously though, I am getting closer to figuring it out...for right now my back will burn every night when I leave his side because I am halfway in and halfway out. I need to feel him and I need him to see that I am there, always.
Parker rested comfortably in his crib so Casey and I decided to go and get our bags from the car. We were silent, mostly, on our walk to the car. I often wonder what was going through his mind. Knowing my husband I could see the pain and anguish in his face. He too hurt just like I did, he's just stronger and he was holding it together for me. The walk from PICU to the ER to get our car is VERY long. Then when the ER admins realized we were admitted they give you that all too familiar sympathetic look. We got back to Parker's room and decided to try and get some sleep.
It was about 3AM when I decided I could no longer sleep in Parker's room. It's super loud in ICU rooms. Beeps and beeps and more beeps! I grabbed my pillow and headed for the family lounge. I remember the ICU was a complete ghost town. Usually nurses are at their stations monitoring from their computers nearby. Then all of the sudden I look to my left and I see a group of doctors and nurses giving a little girl CPR. A nurse was literally on her bed pumping with all her might.
It was like a train wreck and I couldn't help but look. When I was finally able to peel my eyes away I walked to the family lounge shocked by what I just witnessed. I sat still on a couch in a cold lounge with strangers. It was 3AM and I could hear crying, praying and snoring. Tears were streaming down my face praying to God once again to grace my sweet family with his love, strength and courage. For the first time I also prayed that he would give us a break. I have never prayed that before, but this time, all I could do was imagine Parker on that bed getting CPR. I also prayed that if God for one second thought he needed my sweet angel he would spare him and take me instead.
God answered my prayer for strength because he sent my husband, the strongest person I know (besides Parker of course). There wasn't anywhere for him to sleep so he slept right by me on the floor. It's hard to remember and have faith in times like this, but God answers prayers every day. They may not be the answers you thought you would get, but he is there. I keep telling myself that every time I hear my angel in pain crying. We are still trying to understand why our family, why our Parker.
For now we are going to put away the "why's" as hard as that is. My dad always offers great advice in my times of emotional distress. I know it pains him to see his daughter go through this. Our parents had "normal" babies and were blessed with health and good memories. I think Casey had his tonsils out? Big whoop! My dad reminds me to look around. It could ALWAYS be worse. Be grateful that he is a strong baby, breathing on his own, eating on his own, and has such a loving and supportive family behind him. It's hard to see when you are knee deep in anger and self-pity. Sometimes that reminder is just what I need to snap myself out of it. I like the dose of reality my dad gives me. He knows just when I need the reminder, too. Plus he doesn't lie. So, I know he wouldn't say it or give me false hope if he really didn't believe it.
The next morning was awfully grim. Depressed, we went into our sweet angel baby's room praying that he had a decentish night. From this point on everything we learned was a shock and not at all what we expected.
Hydro Journey Round #3 - Ding Ding!
We were in the ER for a while. Because Parker is technically a Neuro Surgeon baby. There is a level of complication when it comes to care. Casey called a Neuro Surgeon resident before our pediatric appointment. He told us not to come in. He was "fine." Umm...try again fella. Bringing him anyway. I swear to God we should get a discount for doing diagnostics before they do. It just goes to show that no matter how much they may know, you are always going to know your child better.
Upon arrival the ER doctor was very thorough. He was no stranger to the shunt scene and I could see in his face that he too believed it was a shunt infection. This was definitely not his first rodeo and he immediatley consulted neuro surgery to do a shunt tap.
Ahh a shunt tap. Ever heard of a spinal tap? Well, lucky for us a shunt gets the same fluid a spinal tap does with way less pain. However, if you put a needle in it you are taking a risk of contamination and malfunction when there may be absolutely nothing wrong with it. The ER doctor was willing to take that risk and the Neuro Surgeon was not quite there yet.
So we repeated a lot of the tests we did the prior day to only learn those too were normal. Naturally, the shunt was working. Casey and I always thought if something were to go wrong, it would be that darn shunt malfunction and that was the worst thing that could happen. I do recall our surgeon telling us immediately after surgery that the risk of a shunt infection is extremely rare, but shunt malfunction is higher. So with our odds we will be here in a month with that issue.
I do not know what it is, but for some reason Parker cannot catch a break in any way, shape or form. Whenever someone tries to give him an IV it turns into the worst experience they've ever had. He is so chubby that they can never find a vein. This time, he was chubby and dehydrated so locating a vein was nearly impossible. It's so painful to watch that we had to sit in a lounge for three 45 minute IV insertion attempts. I could still hear my angel screaming and of course that is horrible.
Once again, I know my child and I told the nurse during her first failed attempt that they always find a vein in his left foot. Every. Single. Time. I also told her to call the flight NICU RN. She is one of the best nurses I have ever met in my entire life. This lady puts IVs in the tiniest of babies IN THE AIR. Love the crap out of her and her ability to not torture my child when he needs an IV. I didn't know if she was on call, but if she was, get her down here and she'll get to business.
Three attemps later they called her. She remembered us and immediately took sympathy in our situation. She has also come by and visited us. Like I said, love her to death.
After we basically exhausted all tests the Neurosurgeon decided he was ready to tap the shunt. The fluid came out clear, which was good. He came back about 30 minutes later and told us that the fluid contained bacteria and they were prepping an operating room to remove the shunt and insert an external catheder, immediately.
All in the same moment the ER doctor and the Neurosurgeon started arguing because Parker had been given an extremely low dose of morphine. The ER doctor was just trying to be compassionate and give that sweet baby a break from his pain, seeing how he had been in it for over a day. The Neurosurgeon wanted him to be fully alert to assess him before surgery. At the end of the day the Neurosurgeon asked him to step outside and the ER doctor quickly obliged. Did I mention the ER doctor was about double the size of the Neurosurgeon? Place your bets! Though the Neurosurgeon ultimately won the Battle of Morphine 2014 he did not have the guts to chat with the ER doctor we later learned. He was a no show. I have to giggle because he knew he was smaller and didn't have a chance!
I was sobbing because it was all just too much. My poor baby is suffering. Why does he have to continue to suffer? Why are these doctors arguing and gosh darn it why can't we just catch a break already! I was so worked up I do not even remember much after I knew he was going to be taken away from my arms, yet again, for brain surgery.
They reversed the effects of the morphine, somehow, and both doctors pled their cases to Casey and I. At the end of the day, though some might argue it was inappropriate to argue like that in front of us, I am happy they did. I am so happy that the doctors here feel passionate enough to do that. They care about my son so much and only want what's best. I am grateful for the hands and knowledge of these doctors that treat my sweet angel. Some are more compassionate than others, but at the end of the day, they all work their butts off to make him better.
When social workers are called you know it's getting serious. The social worker that accompanied us during our Hydro diagnosis came into the room again looking gloom. She told us that we would walk Parker to the operating room and she would take us to the intensive care waiting room while the operation was underway. As you may remember my husband walked Parker to the operating room the first time because I am a big ole wiener. This time it happeneed so fast I didn't have a chance to think it over.
Next thing I know they are pushing my sweet baby in that big ole bed to the operating room and we are following quickly. Neuro Surgeons are extremely serious people and thank goodness they are! We've had several doctors tell us that something happens to Neuro Surgeons in med school. They kind of lose all personality and are very serious beings.
As we are sitting in the elevator, and I am sobbing, the Neuro Surgeon looks over at me and says, "Well, I told the ICU they will know who Parker is."
I looked at him puzzled.
He then says, "I told them he is the cutest little baby with beautiful blue eyes."
Of course I started sobbing again and tears are forming as I recall the conversation. This doctor was getting soft to us, after all, we were an anomoly. Honestly, I didn't know he had it in him, but for Parker, I am so glad he was soft. You know you are a rare case when every doctor you meet says, "Sorry it's just bad luck." I have been told that since I had him. SICK OF the bad luck already.
Parker went into surgery at 11PM. The hospital was literally a ghost town, which was good since I was a hot mess. Snot was running down my face and I was gasping-borderline hyperventilating. Yep, I was that mom. We walked him into the actual hallway of the operating room. Serious business those hallways. Doctors were scrubbed up and two of them approached Casey and I. The anesthesiologists. They asked us several questions about our history of being put under and Parker's since this wasn't his first time. They told me he would be taken care of and the social worker ushered us.
At this point my world was spinning. I could see the operating rooms - not too far away. I wanted to pick up my sweet angel one last time before they took him but I couldn't move.
I do not know why, but I am always slightly offended when someone who does not even know my son, tells me they will take good care of him. First of all, this is not helping and second of all, I do not believe you. Umm...last time I checked I was told he would be just fine and here we are 3 WEEKS LATER! I am terrified! He is going to wake up and not know where the heck he is and who you are and I cannot be there. I am leaving him to be terrified and I feel like a horrible mother. I feel helpless and have lost any little bit of control I had.
Words cannot express how I felt at that moment. It never gets easier. When Parker is 37 it will not be any easier. As I walked away from my son I knew there was a possibility I would never see him again. I suddenly thought of his smile and recent spouts of giggles. Suddenly I could smell him as if I was holding him in my arms. I realized that this little man had my entire heart and I would give anything and I mean anything to take all of his pain away. He is a part of me and I have always felt this deep connection to him. When he goes into surgery I literally feel like a piece of me is dying. It's suddenly hard to breath. Tears are streaming down my cheeks so fast that I cannot see.
Casey takes my hand and we leave our sweet angel with the doctors.
The social worker leads us to our waiting room and we sit.
She asks, "Do you need anything else?"
Immediately the smart mouth in me thinks, "Umm...yeah. If you would happen to have a Xanax and a Martini that would be great. Oh yeah, and a miracle too. That would be helpful".
I really have to watch myself here. Normally I am pretty self-contained, unless I am comfortable around you. Then I would say I am pretty sassy. Whenever I am at this hospital with Parker whatever smart mouth thing I'm thinking quickly becomes verbal diarrhea. I have IBS of the mouth and just like the butt IBS it's not pretty and super unexpected. Find your nearest bathroom!! I will make no apologies for my verbal diarrhea. It's something Casey and I can chat about later when we need a good laugh and are delirious from lack of sleep. I love when Casey and I can laugh so hard about the dumbest things I say or do when we are in complete delirian. Absolutely love it!
We are accompanied by other praying families. Praying for their children who are having surgeries or are in comas. Pediatric Intensive Care waiting rooms are a very gloom and doom place to be. There are no smiles or laughs. Just solemn conversation. I was accompanied by other mothers. They too had a piece of their heart on an operating room table. Their fears were my fears and we all gave each other the same sympathetic look. You can't be with your babies at all times and sometimes you have to trust that they will be okay, but sometimes, that just isn't the case and as a mother in an ICU waiting room you know that. It's scary as hell frankly.
Casey and I sat and waited for what seemed like hours. They told us he would be done in three hours. One hour later a surgeon, who we have never seen before, comes to brief us. It's like this happens in slow motion. The surgeon approaches us and I am like, it's been an hour. Oh my god he didn't make it. It's only been an hour. Turns out everything went wonderfully and Parker was already in recovery. They took out the infected shunt. A couple moments later a nurse came by to take us to his room.
This was a scene that unfortunately was not new to us. There was our sweet angel sleeping in an oversized crib. For those of you who know me personally you aren't going to be surprised by this next comment. I have often pondered several ways to get into that crib with him. I just want to lay in there and snuggle with my baby. Nothing weird about that right? I'm not looking to wear footie pajamas or anything. This is NOT the next TLC special or strange addiction. Seriously though, I am getting closer to figuring it out...for right now my back will burn every night when I leave his side because I am halfway in and halfway out. I need to feel him and I need him to see that I am there, always.
Parker rested comfortably in his crib so Casey and I decided to go and get our bags from the car. We were silent, mostly, on our walk to the car. I often wonder what was going through his mind. Knowing my husband I could see the pain and anguish in his face. He too hurt just like I did, he's just stronger and he was holding it together for me. The walk from PICU to the ER to get our car is VERY long. Then when the ER admins realized we were admitted they give you that all too familiar sympathetic look. We got back to Parker's room and decided to try and get some sleep.
It was about 3AM when I decided I could no longer sleep in Parker's room. It's super loud in ICU rooms. Beeps and beeps and more beeps! I grabbed my pillow and headed for the family lounge. I remember the ICU was a complete ghost town. Usually nurses are at their stations monitoring from their computers nearby. Then all of the sudden I look to my left and I see a group of doctors and nurses giving a little girl CPR. A nurse was literally on her bed pumping with all her might.
It was like a train wreck and I couldn't help but look. When I was finally able to peel my eyes away I walked to the family lounge shocked by what I just witnessed. I sat still on a couch in a cold lounge with strangers. It was 3AM and I could hear crying, praying and snoring. Tears were streaming down my face praying to God once again to grace my sweet family with his love, strength and courage. For the first time I also prayed that he would give us a break. I have never prayed that before, but this time, all I could do was imagine Parker on that bed getting CPR. I also prayed that if God for one second thought he needed my sweet angel he would spare him and take me instead.
God answered my prayer for strength because he sent my husband, the strongest person I know (besides Parker of course). There wasn't anywhere for him to sleep so he slept right by me on the floor. It's hard to remember and have faith in times like this, but God answers prayers every day. They may not be the answers you thought you would get, but he is there. I keep telling myself that every time I hear my angel in pain crying. We are still trying to understand why our family, why our Parker.
For now we are going to put away the "why's" as hard as that is. My dad always offers great advice in my times of emotional distress. I know it pains him to see his daughter go through this. Our parents had "normal" babies and were blessed with health and good memories. I think Casey had his tonsils out? Big whoop! My dad reminds me to look around. It could ALWAYS be worse. Be grateful that he is a strong baby, breathing on his own, eating on his own, and has such a loving and supportive family behind him. It's hard to see when you are knee deep in anger and self-pity. Sometimes that reminder is just what I need to snap myself out of it. I like the dose of reality my dad gives me. He knows just when I need the reminder, too. Plus he doesn't lie. So, I know he wouldn't say it or give me false hope if he really didn't believe it.
The next morning was awfully grim. Depressed, we went into our sweet angel baby's room praying that he had a decentish night. From this point on everything we learned was a shock and not at all what we expected.
Hydro Journey Round #3 - Ding Ding!
Friday, April 11, 2014
S is for something and it's not SHUNT
I will never understand why certain things happen to certain people. Ever since Parker was born my faith has been tested time and time again. It continues to be tested. I do not know if I will ever understand why my family was chosen for the journey we have been sent on. I cannot tell you how many times I've screamed it's not fair until tears are streaming down my face. I will do it again because it seems fitting... It's not fair. It's not fair. It's not fair!!!!!
The same night we got home from our amazing appointment Parker started getting extremely irritable. Do not get me wrong. He has always been a super irritable baby. Of course we all would be too if we had been through the crap he's been through. He was just absolutely inconsolable. When were at the University hospital earlier in the day he was perfectly fine. His temperature was fine and he was acting his usual self. Thinking back he may have spit up a little more than usual, but when you have a child of habit out of their routine they are going to be crabby.
That night Parker got up every hour on the hour. Very, very unusual. He typically gets up every night at 11:30 and 3:30. That is what he does. This every hour stuff was exhausting. Of course we didn't initially panic, after all, his MRI was good and his appointments went so well. At about 1AM I got up to get him...again...and he vomited everywhere. The poor child felt like he was on fire. I woke up Casey and said, "Something is wrong."
Once again, one of the best gifts God gives mothers is intuition. Doctors have assured me that my intuition is one of the best that they have seen. I immediately knew it was a shunt infection. I just knew. Just like I knew he had Hydrocephalus. I just had this...feeling. This horrible gut wrenching feeling.
We flew him to our local ER. It was ironic that the same lady who checked us in the day I had Parker also checked us in during our ER visit. Casey and I often joke about she was the beginning of our bad luck because she was sooo nervous when she checked us into the maternity ward. She actually called to the OB and said, "Caitlin is here for her c-section."
Not so much. Definitely did not have a c-section.
I am not sure if it was a full moon or what but that ER was absolutely hopping! Parker's neighbor was throwing up VERY loudly and we had a joint bathroom. Enough said. Once the ER doc finally made his way to us he had to leave moments later because a woman about ready to deliver was on her way. We were thinking, great, he will be gone for another hour. Umm...ten minutes later he was back and all he could say was, "Quick delivery."
They did some blood work and everything came back "normal". His white count was a little elevated, but really nothing showed any type of infection. They gave him some Tylenol for his fever, a good ole shot in his chubby thigh full of antibiotics and sent us on our way. He was actually diagnosed with an ear infection.
To a parent with a non-ill child you would be perfectly set with that diagnosis. Casey and I however had serious doubts. We were told to follow up with our pediatrician that same day and I am telling you our appointment could not come soon enough. Parker still wasn't holding food down and he was getting worse by the hour. By time we made it to our pediatrician's office he had thrown up everything...innnn the lobby.
Our pediatrician did not hesitate to send us on our way to the University hospital agreeing with us that it could be a shunt infection. We could pray for the flu, but let's be real. It wasn't the flu and everyone in that room knew it, including me. Another strange coincidence-the student who saw us when I was crying my eyes out about him having Hydro was following our pediatrician watching me cry my eyes out about him having a shunt infection. I am more than positive I will be in her reports several times. She is definitely getting some great lessons on crazy moms!
We rushed home to pack because we knew we'd be here for the long haul. We packed and drove to the University. We took a quick spin through the Hardees drive through knowing we wouldn't eat for a good 24 hours. I am not a fan of the new bun on the Hot Ham & Cheese. Just saying.
Parker of course was in his car seat looking a little brighter and happier for the first time all day. For a second I was doubting my instincts because he was so peaceful looking and playing with his toys in his seat.
I was extremely close to my Grandma. She passed way a couple years ago. I remember missing her one day right after she passed. I mean a day doesn't go by that I don't miss her, but this day I felt a void in my heart. As I was driving down the road crying a cluster of feathers swept across my windshield. At that moment I felt a sincere peace, a sort of tranquility washed across me. I knew it was her saying, "I am okay."
I am a believer of signs. Since Parker got diagnosed I have been looking for a sign from a loved one to tell me everything is going to be okay. I have yet to see that sign. On the way to the hospital I decided to share, for the first time, that story with Casey. He asked why I never told him that before and I simply responded with, "It never came up."
Then as if right on cue we both smelled so much crap we thought we were on a hog farm. We sure were following a truck full of pigs. That was my sign and it sure was "sh*t."
A couple hours later Parker was rushed for emergency brain surgery.
The same night we got home from our amazing appointment Parker started getting extremely irritable. Do not get me wrong. He has always been a super irritable baby. Of course we all would be too if we had been through the crap he's been through. He was just absolutely inconsolable. When were at the University hospital earlier in the day he was perfectly fine. His temperature was fine and he was acting his usual self. Thinking back he may have spit up a little more than usual, but when you have a child of habit out of their routine they are going to be crabby.
That night Parker got up every hour on the hour. Very, very unusual. He typically gets up every night at 11:30 and 3:30. That is what he does. This every hour stuff was exhausting. Of course we didn't initially panic, after all, his MRI was good and his appointments went so well. At about 1AM I got up to get him...again...and he vomited everywhere. The poor child felt like he was on fire. I woke up Casey and said, "Something is wrong."
Once again, one of the best gifts God gives mothers is intuition. Doctors have assured me that my intuition is one of the best that they have seen. I immediately knew it was a shunt infection. I just knew. Just like I knew he had Hydrocephalus. I just had this...feeling. This horrible gut wrenching feeling.
We flew him to our local ER. It was ironic that the same lady who checked us in the day I had Parker also checked us in during our ER visit. Casey and I often joke about she was the beginning of our bad luck because she was sooo nervous when she checked us into the maternity ward. She actually called to the OB and said, "Caitlin is here for her c-section."
Not so much. Definitely did not have a c-section.
I am not sure if it was a full moon or what but that ER was absolutely hopping! Parker's neighbor was throwing up VERY loudly and we had a joint bathroom. Enough said. Once the ER doc finally made his way to us he had to leave moments later because a woman about ready to deliver was on her way. We were thinking, great, he will be gone for another hour. Umm...ten minutes later he was back and all he could say was, "Quick delivery."
They did some blood work and everything came back "normal". His white count was a little elevated, but really nothing showed any type of infection. They gave him some Tylenol for his fever, a good ole shot in his chubby thigh full of antibiotics and sent us on our way. He was actually diagnosed with an ear infection.
To a parent with a non-ill child you would be perfectly set with that diagnosis. Casey and I however had serious doubts. We were told to follow up with our pediatrician that same day and I am telling you our appointment could not come soon enough. Parker still wasn't holding food down and he was getting worse by the hour. By time we made it to our pediatrician's office he had thrown up everything...innnn the lobby.
Our pediatrician did not hesitate to send us on our way to the University hospital agreeing with us that it could be a shunt infection. We could pray for the flu, but let's be real. It wasn't the flu and everyone in that room knew it, including me. Another strange coincidence-the student who saw us when I was crying my eyes out about him having Hydro was following our pediatrician watching me cry my eyes out about him having a shunt infection. I am more than positive I will be in her reports several times. She is definitely getting some great lessons on crazy moms!
We rushed home to pack because we knew we'd be here for the long haul. We packed and drove to the University. We took a quick spin through the Hardees drive through knowing we wouldn't eat for a good 24 hours. I am not a fan of the new bun on the Hot Ham & Cheese. Just saying.
Parker of course was in his car seat looking a little brighter and happier for the first time all day. For a second I was doubting my instincts because he was so peaceful looking and playing with his toys in his seat.
I was extremely close to my Grandma. She passed way a couple years ago. I remember missing her one day right after she passed. I mean a day doesn't go by that I don't miss her, but this day I felt a void in my heart. As I was driving down the road crying a cluster of feathers swept across my windshield. At that moment I felt a sincere peace, a sort of tranquility washed across me. I knew it was her saying, "I am okay."
I am a believer of signs. Since Parker got diagnosed I have been looking for a sign from a loved one to tell me everything is going to be okay. I have yet to see that sign. On the way to the hospital I decided to share, for the first time, that story with Casey. He asked why I never told him that before and I simply responded with, "It never came up."
Then as if right on cue we both smelled so much crap we thought we were on a hog farm. We sure were following a truck full of pigs. That was my sign and it sure was "sh*t."
A couple hours later Parker was rushed for emergency brain surgery.
A Sigh of Relief
Parker's surgery was a success. It was hands down one of the most terrifying experiences of our lives. Nothing can prepare you for sending your child into surgery, especially brain surgery. We were beyond thrilled when he responded so well to the procedure.
A Physical Therapist visited while we were here in March and she assessed Parker. Because of his condition he is of course high risk for a lot of things and one of them is Cerebral Palsey. Naturally, we are terrified that he will develop that condition and he will need to be assessed regularly. This assessment was great! He tracked with his eyes and showed how strong he was. He also uses both sides of his body equally. So, at this point, we can breath a little..
We took Parker home just 4 days after he was admitted. There was a very small incident when we got home with a projectile vomit, but overall, he did great. Me, being neurotic, called the Neurosurgeon after the projectile vomit and he was not concerned. Parker went on to have two fabulous weeks with his new "hardware".
He was enjoying being home and it was like he was living for the first time. It saddens me to think he had been in extreme pain for the previous 6 weeks and wasn't able to enjoy the simple things that we all take for granted...like seeing. I felt so bad for him basically being robbed of life for 6 weeks that I spent $60 on an activity mat at Walmart. Mind you he already had 3 of them at home... He looks at it for about two seconds before he remembers that we do not live on a farm and he is terrified of farm animals making their "oink oink" noises. Oooh such a diva.
Everything was such a fascination to him! He had a mobile above his crib and he was so into looking at it I literally had to turn it off to get him to sleep at night! This child was exploring everything for the first time and what a blessing it was! Casey and I were enjoying watching him reach milestones he wasn't able to reach before. He even giggled for the first time a day after we got home! Such a blessing to say the least. Parker is now, however, a pure TV junkie.
I'm a reader and I basically study everything child development. I realize there are MANY studies that would suggest infants watching television is a "no-no" but those people have clearly never worked fulltime jobs and needed to shower. So we let the junkie have his fix when he needs it and when we smell. Parker's favorite show is The Real Housewives. He seems to prefer Atlanta. It has absolutely nothing to do with the fact that it's his mother's favorite show or anything.
Now that Parker could actually see us and track with his eyes we couldn't leave him. He needed to be where we were at all times. I do not think I've gone to the bathroom alone yet. This needs to stop or he will need therapy.
We went on to enjoy a couple weeks of Parker being happy and healthy! The third week of the shunt surgery we went for a follow up with his Neurosurgeon and Neonatologist. His MRI showed the shunt was working and his ventricles were way smaller. It was great to see. Just when the Neurosurgeon was ready to exit we were like, "Not so fast friend. We have questions."
When a diagnosis happens so fast like in Parker's case you do not have time to process it and ask questions. Like the important questions. The every day life questions. Casey is obsessed with all things Hydrocephalus and he is Parker's biggest advocate. My husband is ready to conquer the world and find the cure for our son. He's studies everything from risks and other procedures that wouldn't require a shunt. He. Is. Amazing.
We started asking questions and the Neurosurgeon quickly realized he wasn't going to escape so he took a seat. This was the moment I realized he really was the right doctor for our son. He was assigned Parker by chance during our ER visit at the initial diagnosis. We never requested him, but now I would request him every single time. He looks at Parker like a kid...not just a patient. However, like all doctors, he's busy as heck! Their time is super valuable, but so is our son.
I've literally had doctors sigh at me when I keep asking questions (his Neurosurgeon is not one of these people). Oh your pager is going off? Sorry not sorry. Sit down we aren't done here. End of story. This hospital has TONS of staff. In the event of an emergency of course I would want them to leave. I don't want to sound completely heartless, but I know better.
That same day we also had a Neonatal appointment. That appointment went amazing as well. The only concern she had was the fact that Parker still can't hold up that darn head. Um...his head is the size of two year old. I can barely help him hold that head up. I love that big ole noggin though. As his cousin Lindsey says, "He has a big head because he has lots of brains."
Yes, Lindsey, you are completely correct. His aunts also believe he is a baby genius. Did I mention he says mom? Like a lot! Parker no longer cries for attention he screams at me. It's just precious (insert sarcasm). I always wanted a dainty baby. Instead I got an old man trapped in a babies body. I just love him though. Every little thing about him! His grunts, toots and yells. Just love him!
For the first time, in a very long time, Casey and I were able to have a sigh of relief. It was exactly 8 hours after we got home that Parker took a turn for the worse.
A Physical Therapist visited while we were here in March and she assessed Parker. Because of his condition he is of course high risk for a lot of things and one of them is Cerebral Palsey. Naturally, we are terrified that he will develop that condition and he will need to be assessed regularly. This assessment was great! He tracked with his eyes and showed how strong he was. He also uses both sides of his body equally. So, at this point, we can breath a little..
We took Parker home just 4 days after he was admitted. There was a very small incident when we got home with a projectile vomit, but overall, he did great. Me, being neurotic, called the Neurosurgeon after the projectile vomit and he was not concerned. Parker went on to have two fabulous weeks with his new "hardware".
He was enjoying being home and it was like he was living for the first time. It saddens me to think he had been in extreme pain for the previous 6 weeks and wasn't able to enjoy the simple things that we all take for granted...like seeing. I felt so bad for him basically being robbed of life for 6 weeks that I spent $60 on an activity mat at Walmart. Mind you he already had 3 of them at home... He looks at it for about two seconds before he remembers that we do not live on a farm and he is terrified of farm animals making their "oink oink" noises. Oooh such a diva.
Everything was such a fascination to him! He had a mobile above his crib and he was so into looking at it I literally had to turn it off to get him to sleep at night! This child was exploring everything for the first time and what a blessing it was! Casey and I were enjoying watching him reach milestones he wasn't able to reach before. He even giggled for the first time a day after we got home! Such a blessing to say the least. Parker is now, however, a pure TV junkie.
I'm a reader and I basically study everything child development. I realize there are MANY studies that would suggest infants watching television is a "no-no" but those people have clearly never worked fulltime jobs and needed to shower. So we let the junkie have his fix when he needs it and when we smell. Parker's favorite show is The Real Housewives. He seems to prefer Atlanta. It has absolutely nothing to do with the fact that it's his mother's favorite show or anything.
Now that Parker could actually see us and track with his eyes we couldn't leave him. He needed to be where we were at all times. I do not think I've gone to the bathroom alone yet. This needs to stop or he will need therapy.
We went on to enjoy a couple weeks of Parker being happy and healthy! The third week of the shunt surgery we went for a follow up with his Neurosurgeon and Neonatologist. His MRI showed the shunt was working and his ventricles were way smaller. It was great to see. Just when the Neurosurgeon was ready to exit we were like, "Not so fast friend. We have questions."
When a diagnosis happens so fast like in Parker's case you do not have time to process it and ask questions. Like the important questions. The every day life questions. Casey is obsessed with all things Hydrocephalus and he is Parker's biggest advocate. My husband is ready to conquer the world and find the cure for our son. He's studies everything from risks and other procedures that wouldn't require a shunt. He. Is. Amazing.
We started asking questions and the Neurosurgeon quickly realized he wasn't going to escape so he took a seat. This was the moment I realized he really was the right doctor for our son. He was assigned Parker by chance during our ER visit at the initial diagnosis. We never requested him, but now I would request him every single time. He looks at Parker like a kid...not just a patient. However, like all doctors, he's busy as heck! Their time is super valuable, but so is our son.
I've literally had doctors sigh at me when I keep asking questions (his Neurosurgeon is not one of these people). Oh your pager is going off? Sorry not sorry. Sit down we aren't done here. End of story. This hospital has TONS of staff. In the event of an emergency of course I would want them to leave. I don't want to sound completely heartless, but I know better.
That same day we also had a Neonatal appointment. That appointment went amazing as well. The only concern she had was the fact that Parker still can't hold up that darn head. Um...his head is the size of two year old. I can barely help him hold that head up. I love that big ole noggin though. As his cousin Lindsey says, "He has a big head because he has lots of brains."
Yes, Lindsey, you are completely correct. His aunts also believe he is a baby genius. Did I mention he says mom? Like a lot! Parker no longer cries for attention he screams at me. It's just precious (insert sarcasm). I always wanted a dainty baby. Instead I got an old man trapped in a babies body. I just love him though. Every little thing about him! His grunts, toots and yells. Just love him!
For the first time, in a very long time, Casey and I were able to have a sigh of relief. It was exactly 8 hours after we got home that Parker took a turn for the worse.
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