Post-op has been good and it has been stressful over and over and over again.
We really hoped Camden wouldn't get sick and did all we could to prevent it but he got a cold last Tuesday.
Overall Camden has done well. Began acting like his normal self way faster than we assumed and just got right back to his crazy active little boy antics!
Friday we had his post op appointment where they just check his symptoms and incision. He had a bit of a cold but nothing else concerning so we were given the all clear. That night I got sick which I assumed would happen. It's one of those you run on adrenaline and stress for so long once you're told everything is fine your body just crashes. Camden had his first post-op outing-- Dinner with our family and my parents' halloween party.
The Halloween party was kind of hard on Camden, he was super scared. It made me sad to see him so scared, but he got through with the help of Paris. That night Camden ran toward me and I picked him up and realized he had thrown up all over himself. He was still happy and playing and I didn't really know what to think. Camden had vomited pre surgery due to his head pain and then once post op due to the surgery. But this far from surgery to randomly throw up worried me. Especially since just that morning we were told he is fine unless he begins throwing up and acts increasingly irritable.
Garth and I did our best to just act normal and wait it out to figure out what it was, but we knew that if he threw up again that night we would be in the ER.
I was so stressed. Wanting to know if he had a post-op infection, if surgery didn't work, etc etc. However, again he had a cold. So I tried to comfort myself by telling myself that it could be all his drainage.
Over the next few days Camden got cranky and irritable. He wasn't eating, and wasn't sleeping. Still had his happy "normal camden" moments, but this kid has always been happy. Even when he had an ear infection he's totally normal and smiley just doesn't sleep well and throws tantrums easier than if not sick.
He woke up a couple times in the night saying "ow ow ow ow" but he's two and wouldn't tell me what hurt.
We stayed home Sunday and he refused to nap. That evening he had a period of unexplained crying that we couldn't console. I couldn't figure out if something hurt, if he was just THAT over tired, if he had a sore throat like me, etc etc etc.
Needless to say I started to get a little worried but just didn't know what was what. Eventually it came down to the Neuro specifically told me to call if he threw up, was agitated or cranky, and/or complaining of head pain.
So I decided I would give him one more day Monday and try hard to get him really good sleeping see how he did.
Well Camden catnapped which is not like him so I knew I needed to just bite the bullet and take him in. I initially took him in to his primary care physician so I could rule out ear infection and strep before I called the surgeon.
I cried on the way to his appointment which is a little silly, but I just felt so exhausted by constantly having to question and navigate all of these different factors with Camden at all times. He never has just ONE thing going on and I was feeling a lot of pressure.
All his tests came back negative at the doc so I had to make the call to the NS. I explained that I just didn't know what to think and that his incision still looked great but he was just not sleeping and cranky and threw up on Friday.
I was a little shocked when they called and told me he would need an MRI the next day. The surgeon explained that they were worried about the possibility of a pool of fluid at the incision sight, hydrocephalus, and chemical meningitis. More crying from mom.
None of those things are things to mess with. Chemical meningitis would mean steroids and a possible hospital stay. Hydrocephalus or a collection of fluid would mean re-operating to fix a leak or add a shunt. All of these issues are things that can't be left and can cause major issues, so they wanted to see us ASAP.
Needless to say Monday night was not a fun night. Garth and I felt so, so overwhelmed. I told my mom I am just so tired. So tired for Camden. Done watching him go through all this stuff and just wishing I could help any of it.
We all went to bed early Monday night.
This morning I decided I was just going to enjoy this morning. I knew if Camden had hydrocephalus that we could very well be back in surgery by tonight so I told myself we would just have fun today. We played in the backyard in the leaves for a really long time. Every time I looked at Camden I felt like he has to be fine right? But we really had the same feeling going into Camden's first MRI and he definitely wasn't so it's hard to convince yourself after being used to bad news that you could even get good news.
Camden's MRI was this afternoon. It was the first time he would be awake during an MRI as this one was a rapid image looking at the fluid specifically. They wouldn't allow me to go back with him because I am pregnant, but Garth was able to meet us between classes to be there. Camden had to be strapped completely down and restrained during the MRI. Garth did not enjoy having to watch it but he did his best to comfort him during it.
I sat outside in the waiting area and I could hear him scream.
It was not fun.
We headed straight up to the clinic for the results. We kept talking about how surreal it was. That Camden seemed pretty okay but could literally be in surgery that night. And then we tried to not talk too much about how unfortunate and life changing a shunt would be.
FINALLY
The first time we have ever ever ever had good news from an MRI.
We were so so excited.
No leak, no hydrocephalus, no meningitis.
A healthy looking brain!
The even BETTER news was that we got to compare Camden's present day MRI to his old one. His chiari has moved up!! It shows improvement and over the next 6 weeks as the inflammation from surgery goes down it should keep getting even better. We weren't going to get to see Camden's chiari again unless he had issues in the future so the fact we got a little peek and that extra mile of peace of mind was amazing.
The NS explained that he looks great, is doing well, and just has a bad head cold most likely. She said she just believes you can't get too cocky with the brain, that hydrocephalus left untreated is just not worth the risk of waiting questionable symptoms out. She said if anything changes they will see him again but that at this point she thinks he is doing awesome, and has about 6 more weeks of healing to do.
I have never felt so so so excited and relieved. THE FIRST good MRI ever. Garth and I both now feel exhausted and agree this is the most relaxed we have felt since Camden got his diagnosis. We love it.
We are grateful.
It was obviously super scary waiting for the results, but maybe God just knew I wouldn't fully relax until he gave me some concrete proof that surgery helped my son. Who knows [;
Tuesday, October 27, 2015
Sunday, October 18, 2015
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!
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.
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!
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