Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, February 23, 2012

Neurosurgery Visit #561,784

Ok so I'm exaggerating a little on the number.  But it sure does feel like we've had that many visits!  Meagan's shunt catheter, as you know from prior posts, was puckering outward.  Her skull sutures (bone plates) were also starting to severely override and she was having more periods of irritability.  So we had a CT scan this morning along with an appointment with Dr. R.

Radiology was moving pretty fast this morning.. they had Meagan in and out in about 20 minutes.  Then we had to wait for results.  Wednesday is the absolute busiest day for Dr. R... they told us on the phone to be prepared to wait a long time.  That was fine with me.. I just wanted answers.  I went ahead and arranged pick up for my kids from school, and rescheduled my music lessons and was ready for a long day. To my surprise, I was on the way home just after lunchtime.. but it didn't make the day any shorter.

Dr. R called us back and we started to go over Meagan's scan.  I will simply list results below so it is clear and concise.

Good things:

1. Her shunt is still working fine.  The catheter is still long enough into her ventricles, and all parts seem to be in tact.  It is also still anchored where it is supposed to be and the tubing doesn't look kinked on the inside.

2. There is still brain tissue visible.  It isn't much different from last Fall, but, still moving in a positive direction.

Now for the "other" things.  I won't call them "bad" but they certainly aren't things we "want" to deal with.

1. Chiari malformation. Written in plain language.  On her report. (http://www.mayoclinic.org/chiari-malformation/) Honestly, if you will remember a few scans ago, there were "hints" of this.... the cyst in the back of the brain, the crowding in the posterior fossa region, and the cerebral tonsils extending into her spinal canal.  Today the scan showed clearly it is Chiari malformation.  This was almost a "relief"... only because I KNEW it was being "hinted" at for the last few months, so it felt better to have a definitive confirmation of my gut feeling. 

Knowing this is important because outward symptoms of Chiari can include things Meagan has been doing lately....namely, her feeding difficulties.  Meagan stopped taking bottles slowly but surely - even on the slowest flow, she would gag on the milk.  She did not do well with trying a solid as she also gagged.  And now, even when she nurses, she stops several times during a feeding to take a break, gag, or swallow.  She is also spitting out a lot more milk.  Dr. R talked to us about this and he would like us to go back to her GI doctor.  Considering she's having these symptoms, has a definitive scan, and is losing or having trouble maintaining her weight, he thinks it is a good idea to make a plan with the GI doctor to hopefully get Meagan on a better path.  If she nurses for a few more years, that is fine with me, and with her doctors.  But the fact is that she needs some other calories now...whether it's solids, or other things, we need to start building her up.  Especially because she has to work even harder at her motor skills than typical babies. Also, a stronger, bigger baby means a much "better" candidate for surgery (which I will explain later).

2. Overriding Sutures:  Certainly not a "new" problem for Meagan...but they have never been this bad.  Not only are her top sutures overriding, they are REALLY overriding... her side sutures stick out, and her back sutures are sinking under each other.  This would be a sign of overdrainage (shunt working too fast)... but Meagan cannot function at any of the higher settings.  She starts to become fussy, not eat (which we do not need), and her sutures even get fluid pressure in between them to the point where you can certainly see them bulging.  So the bottom line is: we are between a rock and a hard place.  She can't tolerate the higher setting....but this one is obviously too fast for her. Dr. R did not want to turn her up again because we'd be back to the same place we were before - a very unhappy, uncomfortable, un-functionable baby due to pressure.  So, we are staying at this level for now.  The risk? As she gets older...and those bones keep overlapping so badly, there is a high risk for craniosynostosis.  (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002557/) The bad thing about this for a kid like Meagan? Her brain is still growing out.  Will it ever be "normal" or "full"? No... but we need to allow it the BEST chance to fluff out as MUCH as it possibly can.  If her bones fuse early, it can constrict brain growth.  So, if she keeps down this path, and her bones continue to fuse together, Meagan will end up with craniosynostosis surgery this Summer. 
Dr. R has scheduled Megs for a repeat CT scan in late summer with 3D reconstruction imaging so he can see how her sutures look and if any fusion has taken place.  He seems to be thinking that is where we are headed....he told me bluntly today we are headed for another surgery.  But, he is hoping that we get a miracle and Meagan's brain fluffs out and her head naturally grows out enough to pull the sutures apart before fusion.

The thought going back and forth in my mind was "Is there another shunt we could try to find her "perfect" setting....and at the same time, seperate those sutures to avoid the cranio surgery?"... There are options out there.  I have learned a lot about them and did consult a second opinion.  However, I'm having a very tough time with it because I really do trust Dr. R and how he has dealt with Meagan so far.  There is no guarantee a new shunt would work perfectly...and if she still fuses, it would be a third surgery instead of a second.  So it's a very tough decision whether to sit on what Dr. R said today and wait it out until summer....or actively pursue that second opinion even more and push for a new shunt. 

I was glad to see her shunt placement is still fine.. it was a relief. But of course other questions arose with the new findings in the scan.  The worry about the cranio surgery hangs over me as well.  I'm praying that her sutures seperate on their own and we can avoid the surgery all together. But in the meantime, we will go see the GI doctor and try to get a plan going for Megs about her eating.  Between the GI doctor and her new OT, hopefully she will have a lot less gagging instances and can start to gain more steady weight. 

As for the other stuff - it's Hydro.  That's all there really is to say about it. So I'll take the information and tuck it away and keep on keepin' on.

1 comment:

  1. Dear Sweet Megs,
    You are a real trooper. We love you and pray that there will be answers for your challenges and your family. Karen & David