Mini Rollercoaster

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 [;