Let's Hope the 3rd Shunt is a Charm!

As mentioned before, Casey and I have never had to live in a world with a "date" of surgery. I suppose the closest thing we've had was knowing that eventually he would need a new shunt when they externalized his old one. That was different though. We were already living in the hospital for weeks at that point. This time we had to wait over a week. That was a long time to keep Parker healthy and not freak out at any odd behavior, now that we knew something was wrong.

Your mind plays tricks on you...

The days leading up the surgery Parker started getting very, very ill. On Wednesday morning he woke up with a fever and threw up. Great. You've got to be kidding me!!! I thought surgery would be cancelled for sure. How couldn't it!? They cancel surgery if you have a darn cold.

I called his pediatrician for a consultation and blood work. I wanted to see where his counts were and if there was anything obvious going on with him. He kept pulling at his ears so I immediately thought, he is picking this week of all weeks to get his first ear infection. Why wouldn't he!

Well, I was wrong. Parker's counts were all normal and their best guess was he that was suffering from a virus that they had seen going around. The Neurosurgeon was consulted as well. He too believed it was just a virus. As long as Parker was fever free on Sunday, they still wanted to do the surgery on Monday.

Monday was the surgery date. Even though the paperwork I got sent home with said TUESDAY. Thank God Parker's nurse at the university hospital picked up that I kept saying "Tuesday". Oye...

Lots of nerves and sleepless nights later, Sunday rolled around and Parker was fever free. Surgery was going to happen in just one short day. He had a couple of visitors on Sunday and Monday morning before we left. The Neurosurgeon told me it would more than likely just be over night, but Casey and I knew better.

We packed for three days.

The day of surgery was a whirlwind. This was a completely new experience for us. We went to the Day of Surgery check in. Then we were escorted to the anesthesia area where they would prep Parker for surgery. We hung out there with Parker for seriously over like an hour and a half. All of his vitals were amazing and he was freaking out. He was OVER the entire day before it even started because he was staaaarving. HANGRY is the term best used here. We all did the best we could at entertaining the beast until it was time to go.

The Anesthesiologists came in and talked to us. They ended up giving Parker a little "red liquid courage" they called it. We all know this as Valium. Next thing I knew Parker was a noodle in my arms laughing at everything. I asked for some. I was denied.

They asked me if I usually went with them when they put him under. No one has ever given us that option before, but, we've never gone this route before either. We usually had to watch our little angel being rolled away in the oversized crib by complete strangers. So, they explained to me that I can sing to him and help calm him and when he's asleep I leave. Perfect. Sign me up. If I can be with my baby as long as possible, then I'm game. They did say it can be scary for parents because kids tend to freak out when they put the mask on them and then they make odd noises...I didn't care, but appreciated the warning.

Next thing I know the nurse is coming in and pulling out scrubs, a mask and booties. I am like, wait a minute...

She says, "It's a sterile environment so you have to wear these."

Okay...

She helps me get ready and I pick up my angel and off we go. He was quite possibly the cutest little patient ever.

Picking Parker up and being the one to take him down the hall was very surreal. It really happened so quick that I didn't have time to process what was really going on. I was following the nurse and next thing I knew we were in this extremely busy hallway. It was freezing cold in there. I saw a bunch of doors and people in scrubs...surgical scrubs...

She opened the double doors and I was in complete shock to learn I was in his actual operating room. I mean, there was a chair next to the table and tools and MRI scans on the walls...oh my gosh...I was not prepared for that! I guess I might be a little bit of a dummy, but I didn't think I would be in there for some reason. I don't know where I thought we were going, but that surprised me.

They had me sit on the chair next to the table. I began to shake a little bit. It could have been the fact that it was like sub zero temperatures, but it was also probably the fact that I was so nervous I could have thrown up. The nurse grabs a nice big warm blanket and wraps us in it. I turn Parker around as they instruct me to.

She says, "Okay I am going to put this gas mask on Parker. He might fight it a little bit, but that's okay. Just start talking and singing to him."

I wanted to sing to him, really I wasn't embarrassed, but the problem I now faced was a little more important.

"Am I supposed to be smelling this gas," I ask.

I mean I could smell the gas like it was no one's business. The last thing we needed was for me to fall over and pass out on this sterile floor! Only me.

She giggles and says it would take a lot more gas to knock me out, but grabs another blanket to block it from my face.

So I start singing, "You are my sunshine. My only sunshine. You make me happy when skies are gray. You'll never know dear, how much I love you. Please don't take my sunshine away."

He didn't cry or whimper once. I couldn't see his little face, but the nurse looking at him said he was smiling. Then a couple moments later complete silence.

That was it. He was fast asleep in my arms. Then they told me to pick him up and lay him on the table. I had to be the one to lay my baby on the table where they would soon operate on his brain.

Whew.

I could do this.

Really I just wanted to run away with him and pretend this wasn't happening. Putting my best brave face on I picked him up and placed his noodle like body on that operating table. He was sleeping so peacefully. He was incredibly beautiful...perfect in fact.  It pained me to know that the next time I saw him he would be upset and in pain from the surgery. I kissed his cold little cheek and left him in the care of the nurses. I could feel my glasses start to fog up. I was going to lose it!

Pull it together woman! Not here. Not now.

As I was leaving the Neurosurgeon walked in, a little surprised to see me. He was probably thinking, "Gosh this woman is nuts! I can't get away from her!"

I told him, "Oh hey...I am here to assist."

He laughed and awkwardly patted my back.

Awkward pretty much sums up our relationship.

I followed the nurse out of the double doors and she immediately embraced me. This was not her first rodeo. She kept commenting on how good of a job I did.

"You are amazing. You are so brave. Parker needed you and you didn't show a hint of fear," she said.

Tears began to stream fast and far down my face and she just held me and told me to let it out. We stood there for several minutes while I composed myself. Dozens of people must have passed us in that busy hallway, but I didn't see any of their faces. Just their maroon scrubs rushing by.

At that moment I felt pity for myself and for Parker. I hated that this happened again and so soon after we were finally getting on the right track. I was able to start job searching again and Parker was so happy. He was a normal kid for once. I signed him up for tot gym and swimming. Now, it was all over. Those classes wouldn't be allowed for some time because of this surgery. Was this how it was going to be for the rest of our lives? Was I always going to have to pull him out of activities that he loved? I mean, I cannot tell you how happy this boy was in tot gym and in the pool.

It's so...unfair.

I told family members that it was one of the hardest things I've ever done for Parker, but I was grateful for the opportunity to be with him to that point in the process. It was my voice that he went to sleep to in pure comfort and security. He nestled into me and I could hold him and feel his warmth until the very last second. To him, it was a blink of an eye before he woke up again. To me, it was hours of waiting and anxiety. If I could do it all again, though, I would in a heart beat.

After I was done I was taken back to Casey. We gave each other the "we got this look" and went to the waiting room. He is an aimless wanderer and I stalk the door waiting for the doctor to come in. I think it was a little over three hours later the receptionist told us the doctor was on his way up and to meet him in a consult room. We sprinted to the room.

The doctor came in and told us that Parker did great. There weren't any complications or blood loss. He then went on to explain that his suspicions were justified. When Parker's ventricles shrunk so low in December the shunt catheter didn't have any fluid to float in. Tissue then clogged the catheter. When he tested the catheter during surgery there was little to no flow of Cerebral Spinal Fluid traveling through it. He said Parker's body was just adjusting to the progressive build up, but it wouldn't have been long until things got very serious.

So, he replaced the shunt system, moved the catheter and actually moved the shunt to the top of Parker's head. Before it was actually located on the back of his head behind his ear. Now it is painstakingly obvious on the top of his head. This was always one of my worst fears. That someday Parker would have this huge shunt sticking up from his head. I don't want people gawking or making fun of him. This, however, is the best placement for the draining that he so desperately needs right now. So, on top of the head it is. Whatever is best for Parker. It is a part of him and I love all of him so I love this stupid shunt, too.

Soon after our consult with the doctor we headed down to recovery to see Parker. Unfortunately we could hear all that was Parker from the hallway. Turns out recovery isn't so relaxing when you are forced to be neighbors to a toddler. Those poor patients...

Parker was given juice (which he did not throw up thank you Lord) and we were on our way to the regular Pediatric Inpatient Floor! I cannot tell you how happy we were to learn we needed no Pediatric Intensive Care Unit time! YES! That means he's doing great and he is stable. By time we got to his room it was well into the evening. The night nurse walked in and introduced herself and recognition sparked...she has taken care of Parker before and is AMAZING.

Side Note: Nurses came in and recognized not me or Parker, but Casey. Probably because of his good looks, but more so because they remember his ridiculous impressions of the doctors!!! Seriously a year and a half later they remembered him and those stupid impressions. Oye...

So, I would love to tell all of you that Monday night was amazing. It was hands down one of the worst nights we've ever had in that hospital. Parker was so uncomfortable for obvious reasons and setting off alarms left and right. Turns out, he does not like to be hooked up to things (go figure) and only wanted his mommy. No matter who tried to help hold or comfort him, he did not settle. A rocking chair next to his IV pole and no sleep...we made it to Tuesday.

Casey was my go getter. If he wasn't there for this surgery I would have peed my pants and never eaten. True story.

I was of course super nervous for surgery, but what had me the most nervous was the recovery period. I knew having a toddler in the hospital would be a challenge, but man oh man. This was seriously the most challenging aspect of the entire ordeal. Every time we looked at him he pulled something important off or was trying to escape his crib. Parker was so uncomfortable and anxious to get out of his room. We were told we would be getting a roommate on Tuesday, never showed. I think the nurses must have had some secret conference and said that no patient will recover in Parker's room! Needless to say, we never got a roommate.

On Tuesday Parker had a MRI and even got to enjoy some play time! He was running up and down those hospital halls like he had never ran before. Once again, cutest patient ever...

 

So, as you can see. Parker really just needed out of his crib. It was hard to believe he would be ready to run around literally 24 hours after surgery, but he was. He is hands down the strongest person I know.

 



A day after he was running the halls he was released from the hospital. Typically we would have only had to of stayed for one day, but the doctor really just wanted to keep Parker. Probably because it's Parker. Who knows. We knew better and were planning on being there for a while. He was doing so well and we were trying hard to filter our frustration at still being there, but, whatever is best! Always have to remind yourself of that.

We still have a lot of emotion surrounding this surgery and his recovery. Some of it will hopefully disappear as time goes on without complications. We go back to the university hospital next week to have another MRI scan and meet with his surgeon. His surgeon did change the setting on his shunt to drain faster. So, we are praying that there is a change in the size of his ventricles.

This experience has been unique, but okay... The surgery was what we believe to be successful and the staff we encountered were truly phenomenal! Our nurses were amazing (especially our night nurses). Parker was not always the easiest to handle, but they never blinked an eye. I know they are used to that kind of stuff, but their patience and kindness did not go unnoticed.

So that's that! Never a dull moment when you parent Parker. I will keep everyone updated in the weeks to come. October is a busy month for Parker:  Neurosurgery appointment, Disability and Development Assessment and his first official Vision Exam. Hopefully October will be a month of "questions finally answered" for all of us. I also hope Parker is well enough to enjoy some traditional Fall festivities along the way!

Back Story .... Surgery #4

Well..  Where do I begin?

Let's rewind time to September 11. This was the day that Parker had a routine check-up with his Neurosurgeon. It had been 6 months since his last visit. He had been doing pretty good (or so we thought), so honestly I wasn't a tad bit worried. In fact, I went to this appointment alone. They changed the date at the last minute. Instead of rescheduling his appointment we decided that since he was doing so well, it would be an in and out procedure. These appointments are always in and out. No need to get all worked up about who could make it and who couldn't. In fact, I had my afternoon planned to pick up racing packets at a sports store in the mall and grab lunch with Parker after his appointment.

I couldn't have been more wrong about how this day would end.

The day started off typical. We first signed in so he could get his MRI. Now, here is where things started to get off track a bit. Myself or Casey always go back with Parker when he gets his MRI. One of us stands guard with the stroller and diaper bag, the other takes him back with the technician. Then a technician goes into the machine with him to help keep him calm. He always does a great job. In and out in 2 minutes! Because a technician goes in with him we stand back with the other technicians and see the results of his MRI as they are coming through. We aren't by any means Radiologists, but we aren't complete idiots either. This first glance of his scans usually give us an idea what his ventricles look like. Most of the time, to the naked eye, they don't look too different.

Well, this time the technician looks at me and asks if I want to get in with him. I had never seen her before and she wasn't playing around. This lady was in a hurry and wasn't offering to go in with him. So, I don't hesitate. I didn't want him to be frightened, so I stripped off my jewelry and hopped on top of the table to go in with him. Frozen soundtrack and a set of earplugs later we were getting the scan.

So...obviously I was unable to see the scans because I was side kicking it with Parker...

After his MRI we went to meet with his Neurosurgeon. My experience with this office is that we are in and out, quickly. They are very busy balancing patient appointments and procedures and typically don't make you wait. Today, however, we waited for 45 minutes.

"Have you seen him yet? What is going on? I am on pins and needs," Casey text.

I replied, "I know I literally have no clue what is taking so long. It never takes so long. He must be really backed up with patients today."

As a mother of a toddler I pride myself on creative entertainment. One can only entertain a toddler so much in a Neurosurgeon's exam room. They don't even have real beds...! So, cups and odd tools it was!

Finally I could hear a knock at the door...

First words out of his mouth were, "Where is your husband?"

I look at him and reply, "Not here."

"He's not here," the doctor said.

At this point I am like okay, what is going on here. Commence bad gut feeling...

He sits down and says he that he just went through Parker's entire file. Note, he has not been at the university hospital for an entire year. He was actually at another hospital doing a fellowship and we were seeing an interim doctor. I never really clicked with the interim doctor and was so excited to have our original surgeon back. He knew I was emotional and at times crazy, but took Parker on anyway. Brave man. It took me two months to get our appointment switched to this surgeon from the other. I just had a feeling Parker needed to be under the care of him.

"Okay. I am going to let you tell me what's been going on and then I'll give you my thoughts," he says.

I was a little confused because I wasn't really sure what was going on that I needed to talk about. He must have noted my confusion and then brings up all kinds of issues we were having with other specialists at the hospital. He seriously read through every single note from every single doctor I had talked to since he had been gone. God love him.

So, as Parker is literally ripping the office up, we talk about all of the appointments and phone calls that went on throughout the year.

Here are some of the highlights:

- MRI in December 2014 indicated ventricles were at a very low state - almost too low.

- Hospitalization in March 2015 because of unknown excessive vomiting - MRI at that time indicated ventricles tripled in size - they were however on the "normal scale" and no intervention was needed at that time.

- March 2015 (2 weeks later) - MRI at that time indicated ventricles were a tiny bit bigger. We were told this could be Parker's new norm.

- June 2015 - Parker has significant developmental delays and is red flagged at a Neonatology appointment. We were referred to the Center for Disabilities and Development at the university for assessment.

- July 2015 - Parker begins having "zoning off spells". I contact his Neurologist and we were to talk about a possible EEG and MRI. No one from the office called to schedule and I did not aggressively seek to make this appointment. The spells went away. (side note: feeling pretty guilty about this)

- August 2015- Parker begins regression developmentally. He loses balance and easily falls many times throughout the day.

- September 2015 - Parker begins to lose balance more frequently and starts zoning off spells again. He wakes many times throughout the night.

I look at him a little bit overwhelmed by his take on the timeline.
"When you put it that way, yeah, I guess there has been a lot going on...," I say.

He replies with, "Let me just watch Parker for a couple minutes."

This was kind of awkward. Was I supposed to be a silent bystander in this period of observation? He clearly doesn't want me talking. I am a nervous talker and Parker's Neurosurgeon is a studier. Not a super good combination, but I did my best to shut up. He has moments of silence where he is just thinking. I do my best not to act weird or awkward. This was seriously the longest 5 minutes of my life.

Of course during those 5 minutes Parker is falling all over the place and  acting as rotten as can be. At this point he had been in the tiny exam room for over and hour and I can safely say was over the entire experience. Cheerios and Kleenex are flying everywhere - at one point he was slapping his surgeon's shoes. He even went behind him and started flapping his white doctor's coat. My god this child.

So, then the Neurosurgeon pulls up all of Parker's MRI scans to show me his measurements. Sure enough, his ventricles were getting bigger. Knowing how crazy I am he even got out the good ole measuring tool on the computer to prove to me that they were bigger. At this point in the game he said it was his belief that the valve in his shunt malfunctioned back in December, hence the huge variation in the size of his ventricles. So, his best guess...the valve was broken.

Which means brain surgery to repair it. You've got to be kidding me! Commence tears!

"I mean he has to have surgery? Are you sure? I don't know what to do," I wailed.

He replies, "Look. It's my best guess. There is a lot going on and in six months we are going to wish we took care of it now. It's not super common to operate when a patient isn't showing shunt malfunction symptoms, but with Parker, we can't take many chances."

"So you would do it?" I ask.

He said, "Yes. I would do it. I can do it today even."

"What! No. NO. I cannot do this today. I don't even have a clean pair of underwear packed," I cried.

<Why that came out of my mouth I don't know. Moments you can't take back...>

He then said that he didn't want to wait long, but, if his Shunt Series x-rays came back normal we could wait a week. So, I agree and we go get his x-rays. These x-rays show the shunt and all of the tubing that goes down into his abdomen. Typically doctors can see if there is a kink or some level of disconnection.

They came back normal. Whew.

The doctor then says he is going to do all of the pre-op tests while we are there. So, I went on a mission through that entire hospital for x-rays, blood work and a physical. The highlight (I say this with complete and utter sarcasm) was probably getting a urine sample from a toddler who wears diapers. Like, are you kidding me? Wow. That was interesting. They taped this little contraption over his "man parts" and we waited.

And waited.

And waited.

Eight ounces of juice and 30 minutes later he tinkled like less than an ounce. What-ever! I say it counts! Peace!

Next thing I knew the doctor popped back in with a consent form. This is real life. When they hand you the consent form it's serious and it's happening. He went through all of the risks that I was unfortunately very aware of. One of them being a shunt infection...

I signed my name and that was it. Parker was scheduled for surgery.

At this point we had been in the hospital something like 6 hours. Everyone close to me was frantic and trying to help in any way they could, knowing I was there alone. I was really fine, though. Oddly enough I was okay. I had a couple meltdown moments, but overall, once I had a good cry, I was just hell bent on getting through those pre-op appointments, getting Parker lunch and changing his diaper. I needed to get home and talk this day over with Casey. Casey was aware of what had transpired and was also freaking out.

I cannot tell you how well Parker did. He is a scheduled child, almost to a fault. If you mess with his schedule, watch out! Well, he didn't even get lunch that day until 2PM and he is usually taking a nap during this time. He was such a trooper and his cooperation made it a lot easier for me to handle.

So with our day of surgery instructions in hand we were on our way into the world. We have never been in a world with an impending brain surgery date. Casey and I struggled all weekend with the outcome of that appointment. Immense guilt consumed him for not being there. No one wants to put their child through surgery, so of course we start pondering whether or not we were doing the right thing. It's so hard! He wasn't showing the traditional symptoms of a shunt malfunction.

The following Sunday some of my close friends and I had already registered to do a 5K Race that benefited the Children's Hospital. We went wearing our Hydro Blue shirts and dominated. While we were enjoying a couple celebratory "adult beverages" after the race a woman approached me.

She asks, "Which one of you is Parker and which one of you has Hydrocephalus?"

I look at her and reply, "Parker is actually my son and he has Hydrocephalus."

"No way. I have Hydrocephalus. I have had it since I was 6 months old. I got it from bacterial meningitis. I doctor here at this hospital," she said.

I immediately take full advantage of speaking to a woman who suffers from the same condition as my son.

"Can you feel you shunt?"

"How many surgeries have you had?"

"How do you know if you shunt isn't working?"

"How old are you?"

"What do you do for a living?"

This lovely woman answered every single one of my questions and helped me in more ways than she will ever know. In fact, her most recent surgery had been over a decade ago. She wasn't showing the typical shunt malfunction symptoms (just like Parker currently). Her mom just had a feeling something was off and sure enough, it was. She was a healthy, active and amazing young woman. Meeting her gave me so much hope and strength. Meeting her made any guilt I had about putting Parker through surgery again disappear. We were doing the right thing.

God sent her to me that day. Out of 1600 people she found me. Needless to say there were a couple tears of happiness from us that afternoon.