The Hospital Stay

I wanted to give a quick summary of our hospital stay for my memory as well as for those who have asked questions!

Monday October 12th:
      The night before surgery Garth and I got very minimal sleep. Part of this was packing and repacking and making sure we were all ready by me while Garth tried to get ahead on homework, and the other part was just how do you sleep the night before things like this?
Garth and I woke at 4:30 and loaded everything up in the car. We woke Camden at about 5:15 and loaded him up. At first he tried to roll over and go back to sleep, but once in the car he was his normal happy self. He pointed out the moon and the stars and excitedly babbled the whole way to the hospital. This almost made the drive worse, like he had no idea what was coming and we felt guilty.  

We checked in at 6:30 and Camden watched the ball machine they have in the entrance of Children's while we waited for my parents. Once we got to the surgery waiting area my parents got to give Camden their love for about 5 minutes and we were called back.
Garth and I got Camden in his gown and then met with the anesthesiologist, then the surgeon, and then a nurse who gave Camden some medicine to relax him.
We were both able to scrub in and go back with Camden into the operating room and stay with him until he fell asleep. 

When we walked into the OR he waved to the Doctors and said hi and thank you. We set him on the table and he picked up the little donut pillow and stuck his face through the hole to be silly. It just about broke my heart.
Then we laid him down and he cried pretty good once the mask went on, and then we left our little boy. It was so hard. I made myself hold it together until we walked away (Garth and I agreed no showing fear in front of Camden). And then the 4 hour wait began.
Children's updated us every hour by phone. They called about an hour in and let us know the incision had been made and the operation was underway. Knowing they had officially cut my baby's head was really hard.
Having my parents in the waiting room helped us just talk and relax though.

Time passed and the surgeon finally came out and told us it went really smoothly and as planned. We were excited. He said "just expect him to be really pissed off now" and went about his day.

We headed up to the PICU waiting area and I found myself so excited yet so so nervous to see Camden. I knew what came next would be the hardest part.

Finally we were taken back into the PICU and as we rounded the corner to Camden's room I could hear his cries. Instinctively I picked up my pace and turned to his room to see him screaming and being pinned down by two nurses. It was so awful. I found myself angry they waited so long to get us that he woke up without us there, but I was later told the dose of morphine he had should've kept him asleep longer and he came out of it very very suddenly.

Garth and I rushed to his side and rubbed his face and told him we were here and it would all be okay. He stopped his screaming (this screaming was SO different than normal cries from Camden. It was a pain scream, and one I've never heard from him) and he calmed down but still had tears just flowing down his face. It was SO awful.
They gave him more morphine and he drifted into a bit of a raspy sleep. He was still on oxygen at this point as his breathing was still a little labored and he just looked so so pitiful. As time went on Camden would wake crying and in pain but unable to get a lot of help. Finally his first coherent request came and it was "Apple Juice". We gave him a juice box but he just ended up throwing it right back up. (It is very common that this type of surgery makes you very nauseated and we were told to expect a lot of vomit). Vomiting really hurt his head because of the natural way your head jerks when you throw up.
Basically they tried to get Camden to have wake periods and sleep periods via morphine. They couldn't keep him completely sedated as they needed to come in and check vitals and pupils every so often being that this was a neurological surgery. As time went on Camden got worse and worse. Less and less comfortable, begging to be "all done" and lots of crying. He wasn't really having successful sleep periods. The nurse told me she didn't understand why he was still even able to fight it after his three doses of morphine. We decided to switch him to oxy as soon as we could.
As soon as we got him onto Oxy he did a little  better coming in and out of sleep. The half dose of morphine hadn't been enough to touch his pain, but the higher dose made him loopy and frustrated, but never sleepy.

Monday was so so very hard. I can't even really put it into words. There wasn't much we could do for him. He couldn't move himself and he couldn't turn his head. He wouldn't eat, he just went back and forth from the bed to the rocking chair and we did our best to distract him with movies.

Our day nurse was great and understanding about how scared he was of her. Our night nurse was awful and very very rough with Camden. She marked the turn where Camden began refusing his meds so he would have to be pinned down and forced to take them.

Over all a very terrible day, but he got some good sleep and was able to sleep with Garth in the rocking chair.
One of the hardest parts of this day was that I couldn't rock Camden even when he begged for me. I tried, but my pregnant belly made it so his head sat kinked and it hurt him. There were two times I had to walk away from him so that he would settle for Garth and stop begging to be rocked by me and those are the two times I believe I cried the most at the hospital. I mostly held it together in front of Camden, but having to walk away from a baby who is crying for you is not an easy thing. My only comfort was that he wouldn't remember, I counted on the morphine for that lol.

For a long time now I have been given "rules" about my contractions pregnancy wise. I've been having contractions forever, off and on. I've only had to go in for them once, but I was given a new specific rule about how many I can have in an hour and for how long. I find myself having to sit more often than I would like in order to not go over my count. If i go over I'm supposed to call the hospital and follow pre-term labor instructions. Monday is the only day since being given the rule that I broke it. I intentionally told no one, but I tried my best to pay attention to if they were progressing or not. Eventually I had to sneak away while Camden napped and go drink and sit in the cafeteria with my mom to get them to stop, and by this point they were pretty painful. But they stopped! So yay for that.

Tuesday:
Tuesday morning was worlds different than Monday. Camden was still not quite Camden, but he was talking. He laid in bed and ate a muffin and drank some juice which made me so happy.

 He interacted a little that day, and slept as much as you can when in the PICU hooked up to SO many things and checked so often. He still did not try to move. We had him sit up for about 5 minutes to do a puzzle and to try to help him get using those muscles so they wouldn't stiffen too too much, but he couldn't manage it very long. Tuesday was full of ups and downs. Moments that were much like monday, and then moments where he was happy and joking with us. I really had to get on the nurses to make sure they got him his meds on time and often they were late. You could always tell when we were behind on the meds and then it took a while to get back on top of them. Turns out Oxy makes Camden itchy all over, so with each Oxy dose came benadryl and if they missed it or gave it too far apart he was miserable.

Thankfully we were transferred out of intensive care that afternoon and Camden was able to go from 4 needles and 4 wires to one wire and two needles left in.
Tuesday night Paris visited and so did my parents and Anna. Camden liked having Paris there and eventually found himself wanting to play. He was giggling at Grandpa throwing a ball against the ceiling, and He RANDOMLY hopped down to get off the bed it was so shocking. He was super unstable but he wanted to play. He began by rolling a car back and forth with my dad and I was so shocked. He then decided to stand up and throw the ball like Grandpa! And then he JUMPED in excitement. It was so crazy! He was running and jumping not very long after surgery! This activity lasted not long though and he quickly fell asleep. He slept really well this night and I got to sleep in the bed with him since he had less monitors so I actually got some sleep too!

Wednesday:
Wednesday Camden was on the move, but not very coordinated. He was tired of bed and tired of watching the only two movies the hospital had there for him. He wanted out and we were having a hard time trying to keep up with his wobbly self.
Watching Camden first walk that day honestly really scared me. His legs were falling out from under him, he couldn't get them to keep up, he looked terrible. It is scary when you know they've touched your baby's brain and hard to not worry about all the possible problems they could cause! But the surgery was right near his balance center, and it changes the amount of CSF that naturally flows through his brain so his equilibrium was reset and I was assured it was normal. He was still really stiff and nervous about moving his head, but he wanted to go see the ball machine. So we went to watch it in the wagon and we tried to let him switch sides so he had to turn his head different directions each time. I teared up a little watching him move around because he just didn't seem like my Camden. But I got him some ice cream and watching him pound it reminded me he will be okay. He was still really stubborn about eating but getting better. We transitioned him off of Oxy and his last IV med Wednesday, and we couldn't get him to poop so sadly Wednesday night we had to give him a suppository. After the suppository Camden was so much more comfortable and happy he ended up staying up till 2:30 am just babbling. We got no sleep Wednesday. The nurses woke him at 4:30 and then Garth and I were woken by several different teams of people at 5:30, 6:00, 6:30 and then up for the day at 7. We were very done with the hospital at this point!

Thursday:
Like I said we had no sleep, and because Camden was likely going home there were a lot of people needing to see him and talk to us. Camden's surgeon came and saw him everyday multiple times and checked his incision himself so we were really grateful for that. Camden was still wobbly and uncoordinated at this point but always getting better. We went to the playroom and played for a long time and by the time we got back we were being discharged. We were so happy to go home! Camden requested one more wagon ride (he really liked them) and then we headed out.

Being home has been great for Camden as far as the fact he is way more comfortable and gets much better sleep. However, in a lot of ways it is exhausting. Harder to contain him and make sure his crazy self doesn't fall or do something reckless. He has gotten pretty stubborn about his medicine so that requires a lot of creativity on our part.
I have had my moment of emotion since being home where it hit me that my baby's brain was touched. That we put him through something immense, and that I still wouldn't even know if it worked for a few months. I am terrified of having to do it again, but so so many people have repeat surgeries for Chiari -- for various reasons. I would love to walk away from this and be done, but remembering there's no cure makes me sad. I don't want to repeat Monday ever. And then I remember my daughter could have this too and the thought of doing it with her is also really hard.
So it has been a little up and down since being home, but we are doing our best to take it a day at a time and just be grateful for how well Camden is doing. He really is such a champion! It's just really hard to not worry so much about every little weird thing !
Post operative infection they say shows up around 7-10 days post op so we want to get through that window. Risk of infection is pretty high with this surgery. We need to wash and check his incision everyday and watch for any signs of a CSF leak. His incision is a little gnarly but overall looks pretty great. He is a little warrior! Doing so so well and doing his best to just be his normal self.
Right now one of his biggest nuisances is that he can't look up high enough to see planes fly over in the sky (still really stiff) he has to sit down to try to look up and see them, but we are getting there!

We are so grateful for all those who care about and love him. He's the greatest little thing!