Dave stayed with Ellie last night after she was admitted at 11pm. We are in a single private room under "precautions" because of Ellie's fever which seems to have subsided for the moment. It's definitely nice to have our own space and it's south facing. We expected to have the MRI this morning, but because of the fact that Children's has limited number of machines (still trying to assess the exact number) and limited hours of operation....Ellie is in a long line of pre-op brain tumor patients. No argument there, I agree with that prioritization. But it means that we are here until tomorrow. I spoke with Ellie's wonderful pediatrician, Dr. Cloherty, just now. He thinks it's her shunt malfunctioning and discussed all the options with me. There are the considerations at hand (this kind of thinking is very like the logic "if/then" trees I did in my undergrad philosophy courses):
IF the MRI shows enlarged ventricles, THEN shunt revision brain surgery. The good news is the Dr. Gumnerova, superwoman and neurosurgeon all in one, is in town. That said, I hate brain surgery. We have lived through so many of them with our little miss and they terrify me, even with superwoman at the helm.
IF the MRI shows no change (it could still be the shunt, because someone with Ellie's level of brain trauma and brain atrophy, it takes a lot of pressure to expand the ventricles) THEN Dr. Cloherty will ask Dr. Gumnerova to tap the shunt. In doing that she would flush the shunt which can get it working optimally and/or will show it is definitely not working...
IF Dr. Gumnerova refuses to do that, we THEN continue down the Migraine route with the Periactin
OR
Try Periactin and a small dose of Depakote - the logic there being to try to go back to the medication balance Ellie had this summer before these episodes began. IF that works (the two meds together) we THEN go for a month or two and IF she is symptom free we THEN pull one of the meds to figure out which one it was that was working...
He again, speaking for all the GI doctors in the world (not really, but it feels that way) suggested we reconsider doing a fundoplication, which he said could get her off all the reflux meds and ensure that she keep down her food. I have written extensively about the fundo...but seeing her lose all this weight and the effect all these meds have on her, I am once again looking for the lesser of two evils. That might be another new name for my blog "Ryn Tales: Looking for the lesser of two evils".
Here we are, waiting and watching and thinking in IF/THEN scenarios. Through it all my dear Ellie continues to shine brightly with a light from within that sustains us all.
***Image description: Ellie sitting on the fence of the Safari Exhibit at the Dublin Zoo in early August, held up by Dave.
5 comments:
Ugh. The lesser of two evils indeed. That's how I'm feeling about Botox this week.
May I ask if there isn't a medication for migraines that she could be given?
Hi Katy - we have had mixed experience with botox. It definitely works, but last time had a systemic effect on Ellie, so we are not trying it ever again and are planning to do serial casting alone.
Ellie is on Periactin for Migraines - but has only been on it about 9 days now so they want to give it a longer trial.
Only go the Fundo route if there is absolutely no other option. I had one, and its already come undone and resulted in a hiatal hernia. They refuse to do the Fundo again, until I'm older, as it will just continue to come undone. This is extremely common in children, whose bodies grow and change. I require so much reflux medicine now and I completely regret the decision that was made to do the fundo.
That being said, this whole situation really is a lesser of two evils situation. None of these options are really great and you just want Ellie to feel better.
We all want Ellie to feel better!
Dear Kathryn,
Keeping you and Ellie in my thoughts and prayers. I really feel for your situation. You want to do the best, least invasive route for your precious daughter. You have been doing a wonderful job so far. Take care.
I too HATE shunts!
What with CP & seizures plus shunts it gets so very overwhelming.
My little ones last shunt malfunction was that it wasn't draining properly at the bottom end, pooling causing pressure to go back up into the head.
We were lucky this time but shunt/brain operations are so terrifying, like you say no matter who is doing it.
I sure hope it is something "simple" this time for you all. Our prayers are with you all.
((hugs)) Shelly
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