“Sometimes life hits you in the head with a brick. Don’t lose faith.“ ~Steve Jobs
We’ve been in the hospital a week and we’re less than a day away from Chance’s 11th surgery. It’s been a trying week full of ups & downs. Today has certainly been a roller coaster of moments.
I think of where I was this time last year and recall fearing how much Chance’s health my affect my family and career. Thankfully I work for some amazing people at Valencia and continue to be surrounded by such amazing support. Just as they promised last year when I learned of the diagnosis, I was reassured this past week that they’re here to help me and my family through these moments of uncertainty. To top it off, they featured me this week on their employe news blog site as their “featured colleague”. I’m quite honored and thankful to have their continued support and to see them supporting so many of my goals, including helping spread the word about spina bifida and the walk-n-roll event coming up. If you have a moment you might be interested in checking it out.
As I was preparing the photos to update on my blog this evening I learned Apple’s Steve Jobs passed away today. Yesterday while Chance and I were passing time I let Chance play with my iPhone. Call it a coincidence but my baby boy may very well have ESP.
That’s right, Chance says RIP Steve Jobs. We definitely couldn’t have made it through all this time in the hospital with out this iPhone.
Yesterday we got moved out of the PICU (Pediatric Intensive Care Unit). He originally was admitted to the PICU because the SPCU (specialty care unit) had no rooms available. The PICU has a lot more limitations so it was a welcomed transition, though I have to admit we miss many of the awesome nurses who helped our baby boy. I got the impression some of them came to work hoping they’d get to care for this adorable happy smiley baby boy of mine.
In just a week Chance has grown so much. He’s still not sitting completely on his own with out being wobbly and falling over but this week his desire to move around has caused him to sit forward more. I am convinced that before long all those baby rolls are going to turn into a six pack with as much as he’s been using his abs lately.
Yesterday was the first day since he was admitted that Chance didn’t get to see Hope & Jaylen. It was tough for us both but we made the most of it.
Chance was very curious and alert yesterday. At times he’d take a nap but I swear every time I got him to sleep someone would come in to check on him and he’d wake up. Sometimes he’d be fussy…other times he was like this.
Every day Chance gets a bath to ensure his head is as clean as it can possibly be to prevent infections. Chance absolutely loves to take a bath. It always leaves him a bit happier.
Afterwards he was super excited. Perhaps because he was squeaky clean. Or perhaps because he was getting that much closer to getting his next surgery over with.
Those arms and hands of his have been so active lately. He’s got great coordination with his hands considering his age. He began motioning his hands like he was saying “bye bye”. I know he’s still too young to really understand that but as I made the motion back to him he would mimic me.
This afternoon the nurses from the spina bifida clinic stopped by to visit us. It made our day.
I don’t need to tell everyone just how sweet these ladies are. Anyone who has a child with spina bifida in central Florida already knows. They truly care about every child and you can just see how much love they have for my baby boy.
Shortly after they left Chance fell asleep. He’s been sleeping very lightly the last two days so I was so thankful to see him resting so comfortably. I couldn’t help but put his new little elmo toy with him while he was sleeping. Yes, thanks to the nurses sweet thoughtful spirits I could just tell it warmed my baby boy’s heart some and helped him rest a little better cuddling with his new little elmo. I’m fairly certain this will remain one of my favorite photos I’ve taken of him in the hospital.
Despite all the smile photos I’ve been sharing on my blog, the last two days he’s gradually become more fussy at times and has slept so lightly. I kept telling myself to stop worrying that something was wrong and realize we’ve been in this darn hospital for so long that it was beginning to get to him. And then this afternoon happened. I began to notice his soft spot getting a bit more full and noticed him getting more fussy as the day went on. This afternoon I finished nursing him after fussy moments and spent a little time cuddling with him and he got sick. Instantly my instincts kicked in that something wasn’t write. I had noticed not as much fluid draining during the day but didn’t think much of it until that moment. I had flashbacks of all the times before when he had gotten sick like that and every time he had a shunt malfunction. Though he doesn’t have a shunt right now, his EVD (external ventricular drain) acts a lot like a shunt where it drains fluid from his head externally. After he got sick I placed him back in his bed and unclamped his EVD. Usually when I do this after feeding him it begins to trickle some of his fluid due to the pressure in his head. I noticed nothing. The nurse came to check on him and we looked at the EVD more closely and watched it and after a longer period of time passed we found it to drain no fluid. I began to get more nervous…and my baby boy all this time became more fussy. We went down to get a CT scan so they could check on his hydrocephalus and the drain.
After going through a stressful hour or two of caring for my baby boy and getting more nervous we learned that his EVD had become clogged. We spent time getting ready for the possibility for a surgery tonight, but thankfully the neurosurgeon came in and adjusted his EVD slightly and it began working again.
So as of right now the plans are for him to go through with surgery tomorrow afternoon to have another shunt placed. Seeing his EVD get clogged makes me nervous. I’m not sure if I’m more nervous that something might happen between now and tomorrow or if I’m nervous that his next shunt could potentially do the same thing that most of the others have done. I suppose only time will tell. It looks like we have one more day of my baby boy having this wire coming from his head draining fluid. I’m anxious for his next surgery to be over and for this past week to be behind us. If all goes as planned we might be able to make it home by the weekend.
by Amanda Kern
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