Wednesday, August 4, 2010

Going home

We are busting out today. Yesterday's fasting study was a bust. For 18 hours Tomas never dropped below 55. The doctor is discounting the study from Saturday and  does not think there is an underlying condition behind any fasting hypoglycemic episodes Tomas is having. Tomas does have glucose dumping syndrome which is a rapid increase of insulin whenever we bolus feed him, and he will need to be on a medication to prevent that. I am discontent though. I still think there is something else going on.
The doctor said we can always re-evaluate if things don't get better. Great - I don't want to come back, I want it fixed now, but it is not to be.
I also got the lovely news that there is definitely something going on with his liver, but that needs to be followed up with GI.
Maybe either the liver thing or the neutropenia thing can explain the hypoglycemia thing. I just need someone to figure out what all these things are. I am very frustrated since this means we have a long road ahead of us yet.
Am am thrilled to be going home though. I miss my kids, my husband and my bed. And at least I have a way to keep him safe until my yet-to-be-announced doctor in shining armor figures this all out.


  1. Sorry you didn't get any answers. I'm sure that home and your routine are just the break you all need!! Rest well!

  2. This is driving me crazy! i know you... you too! You are the mom!

    But I have the same gut feeling. something is being missed. I'm praying novenas for an answer!

    Welcome home! Try to stay for a while.

  3. maybe you will see positive changes once he is on the medication for the dumping syndrome? Maybe? Hopefully at least.

  4. Well, I'm glad your home, but wish more could have been answered. I'm kind of feeling pulled in a couple directions with Jax health as well. Man do we ever get a break?

  5. I'm glad you're home. Tomas and you and the rest of the family are in my thoughts and prayers throughout the day.