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!