Friday, August 16, 2013

Letting her body try to resolve itself

The truth is that we are not any closer to knowing exactly WHAT is causing all the extra fluid accumulation in Alexa's abdomen and we may not know for a bit longer.  But that is good, if it were really bad, a vessel issue, we would know.  Alexa's surgeon took one look at her ultrasound and is sure that there is not any issues with blood flow or too much pressure in the livers' blood vessels.  There was no need for a CT Scan yesterday.
In addition, Alexa's labs are still perfect--kidney is happy, despite the addition of the diuretics(Lasik) which can be hard on them.  Her liver numbers are great too.  Her prograf level is right in the middle of the range, so no changes to her meds. They are being weaned as scheduled.
The plan is to keep her on the Lasik for 2 weeks to help with the urine output.  Her stomach has gone down about 1 1/2 inches.  With luck, it will continue to go down and we can be done with this issue.
There is another cause which they are keeping in the back of their minds.  It is a bit premature to get into it, so I will leave it be for now.  If we get to that point, I will explain further.  It is not horrible, not nearly as bad as an issue with the vessels but might be a bit of a pain in the a** to fix.  So hoping we do not have to go that route.
So although, yesterday was long, Alexa was very happy and not in too much pain.  She passed the time in the playroom on 6A where all our favourite nurses are.
Alexa's potatoe head, "Ruby"
For the last 5 years, my mind has been conditioned to act FAST!  Living with a urea cycle disorder, we learned quickly that whenever there was anything, even remotely off, with Alexa, it was at minimum a call to the on-call metabolic doctor. It more often than not  resulted in going to the ER for an ammonia level.  It was literally an "act now or risk brain damage" situation. Every test under the sun would be run, until we got to the route cause of the ailment.  Everyone was in super-fast mode.

We are not in that position anymore, and it is hard to untrain my brain.  When minor glitches come up, it is hard for me to sit back and "let her body try to resolve it on it's own". It is not what I am accustomed to by any means.  My mind instantly wants to use Dr. Google to search any other possible causes,  tests, and treatments available.  My mind instantly wants to go into panic mode and find out NOW what is wrong and WHY and FIX it!  Waiting for her body to work it out on it's own, as it was meant to, is not something that we ever had the luxury of doing before.  My mind needs to learn that we have more than 2-3 hours before devastating effects are seen.
We do not have to go back for a check-up until next Wednesday.  This "we have time to wait it out" approach is so new to us, but we are trying.

1 comment:

  1. We only dealt with the "act now" type mentality for 4 months and I still am trying to untrain my brain. I constantly have to remind myself to chill out and look at how L is acting - if she is acting well, focus on that and let the rest declare itself. Hang in there!