Amanda Kern

“God places the heaviest burden on those who can carry its weight.” ~Reggie White

I know it has come as a bit of shock to many of you to wake up this morning and learn that my baby boy has went through with his sixth surgery. It all happened quite fast, and I suppose it’s wise I take a moment to update you all to prevent the phone from ringing off the hook with the many questions and requests for updates.

On Tuesday Chance underwent all his routine tests to check in on his spina bifida in preparation for his upcoming spina bifida clinic on August 5th. Originally I admit I was a little disappointed to learn of the scheduling mix up because we’d planned to do his tests on the 29th for several weeks now. So though I was annoyed temporarily of the inconvenience it caused to change what we had planned…I can see the big man upstairs was looking out for my baby boy because having those test results last night did help some in seeing how quickly things changed in such a short time.

Yesterday late afternoon I was resting with Chance who was a little fussy, at the time it was nothing more than I was use to. He awoke from sleeping more fussy and began to projectile vomit all over…more than I had ever seen. He’s my third child so spit up and baby puke really typically doesn’t concern me, but projectile vomit definitely does. Even more so when there are no other “sick” symptoms and he had no problems pooping lately (which sometimes can cause him to spit up more often). But I held my breath and tried to remain calm and didn’t hesitate to email his neurosurgeon. I waited and figured if anyone could calm me down it would be her. I really hoped she’d tell me I was just being paranoid and maybe we could bring him in for a checkup the next day. In the next few hours that passed he became more lethargic, not just sleepy, but seemingly more weak in his movements as I held him or interacted with him any moment that he was awake. Because he has a shunt one of the big concerns is that it could malfunction. I’ve been told that the failure rate is 50%…and we all know what our luck is like with these unlucky lotteries. As a baby we have learned his soft spot in his head can help us tell how much pressure is building up with his head due to the cerebrospinal fluid that is known to accumulate from spina bifida. When a shunt is working properly it should drain this fluid from his head. I noticed it seemed more full, but in my head I prayed maybe his soft spot was beginning to close up. But with spina bifida we learn to check this spot compulsively, yes, every day…often times several times a day. And I knew in a day or so there was no way it would have closed that much. Over the few hours we waited before chatting with his neurosurgeon he vomited two more times and it definitely began to make me nervous.

Around nine last night his neurosurgeon contacted us as she was reading the MRI results we discussed the situation. There was a fear he was getting dehydrated, but a bigger concern that his shunt might have been malfunctioning. She made it clear she didn’t want to wait…all these things he was having happen were considered “symptoms” of a potential shunt malfunction…but the hopes were that we’d just take him to the ER, have them rule out any issues, give him an IV and send us home.

Though he had just had an MRI the day prior, there was a concern with how much his disposition changed in a 24 hour period so once we arrived at the ER he underwent another MRI and had his shunt “tapped” to help check the functionality. The MRI showed his ventricles in his brain were a bit enlarged from a day prior. To “tap” his shunt they drained a bit of fluid from his shunt site to see how easily it flowed outward. It only took a moment to see how sluggishly it drained from his shunt site. The on call neurosurgeon made it clear right then in there that it was important he go right into surgery to have his shunt replaced. In the few hours we were in the ER we saw his disposition worsen. He seemed even more lethargic and was in a daze when he was awake. We stayed by his side as they prepared him for surgery and right up until the point that they took him back. I definitely won’t forget this stare he gave me. Since so much of his personality has begun to show through the last few months, I just knew seeing him in the hospital that the problems with his shunt were affecting him quite a bit.

After Chance’s surgery the on call neurosurgeon came to chat with us. He said his shunt definitely had blockage which was causing all the issues he was experiencing yesterday. Apparently it’s that much more common in babies when their ventricles are a smaller size because when the fluid pressure decreases it can contribute to the blockage. When we got to go back and see him for the first time he was alert and in a much better mood.

So we’re here at the hospital taking care of our baby boy. We’ll likely be here a day or two to ensure there are no infections of malfunctions. He’s a little cranky from the surgery at times, but doing better than last night. I’m sure once I have an opportunity to download all my photos I’ll have much more to share…but for now this is a quick update so you all are officially updated. My apologies for doing this through my blog…but with as crazy as the last day has been it’s far easier than calling and texting everyone and repeating the story over and over.

Thank you all in advance for the continued prayers. Now if someone could kindly let God know how much I hate rollercoasters. *sigh*

This is the week Chance had schedule to undergo follow tests to check in on how he’s doing with some things with his spina bifida. We were suppose to spend time Friday doing these tests but apparently there were conflicts in scheduling and at the last minute we realized we had no other option but to get them out of the way today. That left me taking my tough guy to the hospital this morning. Here was just before we left…yes, the look on his face just says to me “lets go get this mess over with!”  …as if it was anything in comparison to some of the things he’s already been through.

He had to undergo an MRI where he was sedated in order for them to capture images of his spine and brain to check on how he was doing with his spina bifida, hydrocephalus, and shunt. They took him from me for about an hour and a half and finally I got to go back to be with him once he woke up. This was just a moment after I greeted him…he was still a little drowsy. Bless his little heart…he once again was a hard “stick” for them to put in an IV. He has marks on each foot and hand. Yes, there’s no doubt he is my child.But he did well.

Of course he knows the sound of the click of my camera shutter…he became more alert quickly after I took a photo. Poor little guy hadn’t eaten anything since close to 2am so he woke up shortly after this begging to be fed.

Afterwards we went to have him undergo an ultrasound that I got to be in the room for. They took images of his kidneys and bladder to check on how they were doing. He was so awesome.

It was a long morning…but these tests were only a small challenge for my tough guy. I don’t know who was happier to head home afterwards.

We won’t find out the results of the tests until August 5th when we go to the spina bifida clinic to meet with several doctors. Until then we’ll keep our fingers crossed and say our prayers.