Wednesday, August 28, 2013

Plan B

I keep getting asked if Alexa's stomach has gone down any.  Has it gotten any better?
The answer is NO!  
It has not gone down very much.  She is uncomfortable, not eating a great deal and in pain after drinking too much water or milk.  However, it doesn't look like it has gotten any worse either. That is the silver lining that we are holding onto.
Enjoying Starbucks
We let her body "try to work itself out" and it didn't work any so we are onto plan B.
We went for our regularly scheduled appointment yesterday--bloodwork, 1 hour of IV gancyclovir, 4 hour IV of cytogam and a consult with IGT--Image Guided Technology.  You might remember that is where she got her PICC line inserted, that dreaded spot in between the surgical waiting and the PICU--the spot that gives me anxiety just thinking about it--yep right back there!
After a bit of back and forth between the transplant team and IGT team, this is where we are going with the ascites.
They have Alexa booked for an abdomen tap on Friday morning.  A procedure in which they will insert a small needle into her stomach and drain a bit of the fluid to have it sent to the lab for testing.  We should know the results in a couple of days and then we can(well really, the doctors can) decide a course of treatment which can include diet changes (wonderful!--just as I thought we had gotten over the diet restrictions!) and/or IV medications (cause she really isn't on enough right now!)

A lot of things about this procedure was/is causing me some stress--the biggest one being I really do not want her to go under anaesthesia for a third time in 6 weeks.  To do a full drain of her fluid, they would have had to put her under.  It was instead decided that they would take a small sample.  This means that she will get a small sedation and local anaesthesia while they do the procedure.  I am happy about that but conflicted because I do not want her to be further traumatized by witnessing any more procedures.  I asked if I can go in the room with her, and the consult doctor said that if he is on during her procedure, I would be able to go in but it is up to which doctor is on. If they are smart, they will let me into the room with her, because if they don't, they better be prepared for one hell of a fight from Alexa.  She is still not over being taken by the nurse when she got her PICC in, so I don't envision a small sedation being enough to keep her calm during the procedure.

I know it could be a lot worse--It could be SO much worse. She is happy(most of the time) and her liver is healthy!
But right now I am scared. This procedure is bringing up a lot of emotions--probably ones that I have not had time to deal with since July 18.
I do not like not having any answers.  I do not like that the doctors and nurses don't have any answers.  I would like the procedure to go off without a hitch and for us to come back with a plan that works(and quick).  I would like to start preparing Alexa for her first day of Senior Kindergarten next week and the upcoming year, but I feel like we are stuck in some sort of limbo. We are moving one day at a time, so it is hard to get excited about buying a new lunch bag and first day of school outfit when I don't even know if she will even be able to go to school on Tuesday.  

1 comment:

  1. Oh Shanna, I will be praying SUPER hard for Alexa so that the doctors can figure out what is going on asap. I can only imagine the pressure you are under with school starting, too. Just know that you have a little fighter there and that everything is going to get straightened out. Michelle xoxo