Thursday, June 7, 2012

How Are Those Shunts Doing?

In all the excitement of the past two day's posts, I forgot to give you an update on how Jack's doctor visit went.

Meeting a new doctor is always interesting. When you arrive, you are given all the paperwork to fill out - medical conditions, previous surgeries, medications. I always, and I mean always, forget at least one or two of Jack's surgeries or conditions, only to fill the doctor in later when he asks a question once seeing his chart. Never fails. Why have I not learned to carry around a little card with it all typed out? That way I wouldn't sit there for 20 minutes trying to remember everything.

Speaking of Jack's chart. Since our old neurosurgeon left town, all of Jack's medical records were sent over to our new one. We were waiting for the doctor in our little room and he walks in and plops this HUGE file down.

Something along the lines of this...

Well... not that big, but quite a large stack of paperwork. He then says "I just got this 5 minutes ago and have been trying to make my way through it." Uh, good luck with that! And "when they sent this over, all the pages got out of order." Oh OK. That's just great.

We spent a bit of time trying to remember the exact numerical setting of Jack's shunts (he has the programmable kind) and discussed some things we've never quite understood. Jack is a rare case where his shunts are set at the highest pressure possible (least amount of fluid draining) and his head size is not quite as large as they'd like it to be. Typical brains are cushioned by a nice amount of cerebral spinal fluid and ventricles are filled up as well. This allows the brain room to grow and acts as a layer of protection. Jack barely has any CS fluid in his brain. They new doc mentioned that in rare cases, if the skull is too small and not allowing the brain room to grow, then they have to open up the skull through surgery (the same surgery performed on kids with craniosynostosis).

So, long story short, we have a new prayer request - 1) grow, skull, grow! 2) grow, brain grow! and 3) a little more CS fluid, please. Other than that, Jack's shunts are working and are set at the correct number that seems comfortable for him.

Summertime means lots of doctors visits because we have almost-guaranteed good weather. Next up - the dentist. Oh boy. I'll leave you with this precious shot taken at Jack's birthday by Lisa Kunkel. I just love it because it's so "Jack."

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Anonymous said...

fyi - Logan had too much fluid draining from his shunt and his head also wasn't growing. Is it possible Jack doesn't need a shunt anymore? That happens to about 1% of preemies who have hydrocephalus from IVH's. When Logan was draining too much fluid (had small ventricles and not much CSF in his brain), he had a MUCH more difficult time developing.

Jessi said...

Interesting you should bring that up... because we've been discussing it a bunch! Did you take the shunt out and how did you come to that decision? The doctors keeps telling us there is no way to really know if the brain is reabsorbing it's own CS fluid unless we "take it out and see"... curious to hear your thoughts!!

Becky Price said...

Jessi, I posted about the surgery that Bella had on our website. Which I believe is the same surgery they would want to try if they took out Jack's shunts. Our doctor said that if they can duplicate the success rate that they originally saw in Africa, that soon they will be taking out more shunts then they put in. Hope that helps you a little. I hope soon I can say that it was a huge success for Bella!! Prayers for Jack!!

Aidan and Evanna said...

My son is the other way, he has extra fluid but similarly the brain size is relatively small. Jack is always in my prayer!