If you’ve been following me in facebook or twitter you’ve likely caught wind that Chance has just underwent a ninth surgery. Yes, number nine. I’ve been meaning to update my blog for more than a week so I suppose I’ll do my best as I’m still at the hospital passing time while my baby boy is resting.
I recall last month reading on the blog of another mother of a child with spina bifida the term “spina bifida boogie man”. When I read her post with an update about her own child I recall feeling so similar, though the challenges our children were facing weren’t quite the same, the concept of the “boogie man” totally hit home after Chance had just went through his last three shunt surgeries. By writing about their “boogie man” experience she reminded me what most parents with kids with spina bifida can likely relate to…the thought that spina bifida is known to have boogie man moments that keep us on our toes. As she put it… “when everything is going just fine, and then BOO, it jumps out and scares you all over again.” Well, here we were for nearly two months finally recovering from the last set of surgeries and BOO…spina bifida has once again come out and scared us.
Since his last set of shunt surgeries I have been compulsively checking on Chance and really trying more to live out each day not worrying as much but still trying to pinpoint when those warning signs arise for a shunt malfunction. The last week or more I’ve noticed Chance a bit more fussy. I kept thinking…maybe, just maybe, yes, maybe he’s just teething like all babies. Or maybe it’s the constipation again that is a known issue with his spina bifida. I kept saying…it can’t possibly be problems with his shunt again. At times, like last month, his shunt has swollen. Not a lot but enough for me to recollect it. Last week his soft spot seemed a bit more full than normal and I recall feeling scared that his shunt was failing again. Jason does an amazing job at trying to keep my calm and helps me remember that he is a baby who is growing fast so we should anticipate him to behave with some fussy moments like other children. So last week we waited and things seemed okay.
Looking back at the last week we decided to go to the beach. It was Chance’s first trip to the beach. I shared these on facebook but I’m just now getting around to updating you all more formerly on my blog. I hoped to take a photo of him sitting on the beach but he’s not quite stable enough so Hope talked to him and we tried to get a photo of him on his own on the beach.
We decided to take photos at sunset. Just before we took the photos I spotted Hope & Chance admiring the sunset. It was a breathtaking sight. I see this photo now and recall thinking of how it captured his shunt well when I took it. Well, now I look back and miss his scar being that small…I’m so glad I took it now.
I lugged Chance’s bowl a distance out to this spot on Clearwater beach. He seems to love to show off how well he can sit in his bowl. The sunset was beautiful as we were taking his photos…thankfully I just barely had enough time. I had dreamed of taking newborn photos of my baby boy on the beach shortly after I knew I was pregnant with him but due to his spina bifida it was impossible. This photo of him will always be so meaningful to me because of how long I had dreamed to take his newborn photos on the beach. He’s not quite a newborn but this moment was one I definitely won’t forget.
I owe Hope all the thanks for his photos again…she helped me get him in position and in adjusting him so I could focus on taking the photos.
And somehow we managed to coerce the kids into letting me take their picture together.
Just the day prior to us going to the beach I was so nervous something was going on with his shunt but I’m glad we didn’t let it interfere with us doing something as a family. It was priceless seeing moments like these with Jason & Chance together.
Fast forward a week and Friday left me worrying again about Chance’s shunt. First one side of his shunt, the newer side, seemed more poofy mid-afternoon. I thought at first that it had to have just been like last month and that it needs time to really build a seal around the shunt’s catheter. He was a little more whiney at times in the evening and by 7pm he got super fussy while we were at dinner. By the time we arrived home Hope was helping with him and he vomited a lot on her. I felt his soft spot and it seemed a bit more full. Given the signs that were noticed it was suggested that we take him into the E.R. to have scans done so they could confirm or rule out if he was having problems with his shunt. Just look at this kid…he knew he was going to have another surgery.
One big red flag was how fussy Chance had gotten. He was more irritable in the first hour we were at the hospital.
Chance underwent an X-ray and CT scan to check on his shunt. It didn’t take long for them to let us know that something was wrong. An E.R. visit quickly turned into us getting ready for surgery #9. Through the tests we learned that his shunt had malfunctioned again. After the last surgery he now has two catheters that help drain the extra fluid from his head. The new catheter became disconnected somehow, likely due to pressure changes in his head.
It seemed like every corner we turned at the hospital there was a nurse or doctor who knew Chance. Here he was meeting the anesthesiologist again just a few minutes before they took him back for surgery.
And the stare just minutes before he went to surgery that reminded me he wasn’t doing well. I’ve only seen this type of stare when his shunt wasn’t behaving.
Surgery took place in the early hours of the morning just before 2am. After about an hour and a half I got to go back and see my baby boy once surgery was over and he had begun to recover. The first sight I saw was his new scar which was much larger. After surgery we learned that the other catheter that had not disconnected was clogged like it has been several times before. During surgery this was corrected and the other catheter was reconnected.
I hate seeing his new scar and seeing just how much hair he had to have shaved from his little head. The nurse gave me a little bag of his hair to keep.
We finally arrived in a room sometime after 430am and my little guy was tired.
Thankfully he managed to rest well the first few hours after surgery so we both could get a bit of rest.
He woke up in the morning in a bit of a better mood. He still had moments where he seemed irritated but for the most part I saw many more smiles like I’m use to.
By midday we were anticipating to be discharged in the late afternoon because Chance had been doing so well. Hope & Jaylen stopped by to visit their baby brother who they missed so much.
Jaylen was so excited to have Jason pick him up so he could see Chance.
Once Chance finally woke up the kids had fun making him smile and laugh. They were doing all sorts of silly things and hearing the laughter from them all was uplifting.
After Jason & the kids left we had met with the doctor and he said he was looking good and he felt Chance was doing well enough to go home but that we’d wait another hour or two before he’d be discharged. I saw Chance in a better mood and I was so ready to get out of the hospital.
With this hospital stay one thing that has changed is that Chance has begun to sit forward and try to roll a bit. I could tell he was just tired of laying on his side so I rolled him over for a bit while he seemed a little more playful.
He’s gotten a lot more playful and more coordinated with his hands these days. He seems to love trying to grab all the wires that are connected to him but luckily his toy helped distract him from them a bit.
As we waited to be discharged I noticed Chance getting a bit more agitated. His soft spot wasn’t as full as it was the night prior, but it seemed to be more firm than earlier the day prior. And then I noticed the veins in his head more prominent again and his shunt seemed a bit more swollen and red. It’s tough to gauge when I’m just being overly paranoid or when my instincts are right. Given all he’s been through I am learning not to second guess that motherly intuition as much. I kept saying maybe the irritability was because he was recovering. Here’s a photo I took that captures his discomfort at one point late in the afternoon where his veins are noticeable.
Every time he’d fall asleep he seemed more irritable. So moments when he’d finally rest I was appreciative for.
After expressing concerns we went ahead and had Chance go through another X-ray and CT scan to make sure his shunt was working.
This kid knows the routine entirely too well.
By the time he finished his tests he seemed to be in a better mood for a short period of time.
After a few minutes he got irritable again and seemed a lot more tired. He began to doze off and I recall looking over at him at one point when he reopened his eyes and he just stared at me.
After his scans he began to sleep as the doctor called to discuss things. The tests all came back normal so I can rest a little easier. We agreed it was best to stay the night once again as a precaution and that would give the doctor an opportunity to come in and check on him one last time.
Thanks again for everyone’s continued support and words of encouragement. I hope the update helps fill you all in who have been wondering about my baby boy. Hopes are that he’ll be well enough to take home in the morning.
by Amanda Kern
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