Catching a Break

Riding the wave was certainly a good description of the "wait and see" we are doing with Meagan's shunt and seizures... but catching that break to get on a good wave seems a little difficult at the moment.


As we know, Meagan couldn't tolerate the higher shunt setting, so they turned it down (faster flow) because she had puffed up so badly and been fussy.  She had also lessened her feedings..etc.But... at this lower setting, she is starting to severely overlap again. 

Sutures really overlapping

 

That alone wouldn't worry me ... but then I noticed later in the week her shunt catheter was loose.  It should be anchored to her skull...and her shunt and valve would move all over like a wet noodle.  It also kinks and buckles when she lays back, or moves her head backwards.  Sometimes, it even buckles when she is just lounging around doing nothing.  It is very odd.


 

Catheter puckering out from her skull

Then today she spit up twice - a LOT of milk.  It was like you had a pitcher and were just pouring milk out.  She did smile at me afterwards... so it's very hard to tell what is actually bothering her. But spitting up along with her other symptoms isn't always a great sign. Also tonight, her back sutures have started to now overlap..another sign of overdrainage.  It's not always a bad thing, as with any shunt symptom, but, together with everything else it is very worrisome.

Back sutures starting to overlap

I sent pictures to her NSG and he said he wants to see her in on Wednesday for a CT scan and go from there.


I'm not really sure what the plan will be.  We can't leave her as she is because she is showing all signs of overdraining.  Unless her CT scan comes back surprisingly good, it will also show overdraining....and it is dangerous to leave her at such a flow because it can cause brain bleeds or a skull collapse from lack of brain holding up the over reaching sutures.
However, if they turn her back up to a slower flow, I know we'll be back to have it turned down again because she puffs up almost immediately, has bulging fontanels, and gets fussy and stops eating.

So I don't really know what we'll do.  I don't want her to have another surgery.. however I want her to be able to function and be happy at least physically as she continues to progress. 

She is one strong little girl.  She has smiled at me so much today.. but also had 2 and 3 hour crying spells.  She is so much stronger than I am.  If I were feeling half as bad as she is, I'd be miserable! Yet through it all, she is still showing me smiles when she can.  I don't mind riding the wave with her.....I just hope that soon, she can catch a break..and be on a good one for a long while.

I hope Wednesday brings us answers. 

What the little princess has been mostly doing today



I want my bright eyed girl to be comfortable again