Saturday, March 19, 2011
A Whole Lot Of....
...... I'm not sure what!!
***Devin is COMPLETELY off his insulin pump... weird and amazing all in one!! His blood sugars were completely rock stable. He required no boluses but was eating everything in site and still hungry!! He actually has lost 2 lbs, how I am not sure! So, the thought was that we were "feeding the insulin" (I never heard of this but supposedly it does exist) We took the pump off 3 days ago and so far so good! His eating has definitely leveled off! and his blood sugars have been stable. Time will tell!! I have a feeling we will be on and off insulin depending on his health and what's going on with him.
***Emotionally he is struggling so bad. At times my heart breaks for him and at times I just wanna cry for myself... How, how can I not manage to help this child emotionally!! How can we transplant organs, send people to the moon, have ALL the technology that we have.. yet NOT be able to figure out a medication that can possibly help his emotional state. I know it is difficult!! He is on a ton of meds and unfortunately they all interact, he has a liver that struggles along.. that is needed to process each med, and a transplanted bowel that we need to absorb as though it's his own. We are having NO luck!!! His liver numbers continue to improve. We will do labs again on Monday and as long as his numbers have continued to come down we will re-try Strattera. We will do labs every 48hrs to watch and see how his liver handles it. Their is only (((1))) reported case of acute liver failure!!!
***On a more exciting note... Dr. K says if he continues to eat and drink as well as he has been he can have his feeding tube out "when the pool opens" LOL!! He is so excited!!! This is something he really wants!!! I hope for his sake we stay on track and this can happen!!
***Devin is COMPLETELY off his insulin pump... weird and amazing all in one!! His blood sugars were completely rock stable. He required no boluses but was eating everything in site and still hungry!! He actually has lost 2 lbs, how I am not sure! So, the thought was that we were "feeding the insulin" (I never heard of this but supposedly it does exist) We took the pump off 3 days ago and so far so good! His eating has definitely leveled off! and his blood sugars have been stable. Time will tell!! I have a feeling we will be on and off insulin depending on his health and what's going on with him.
***Emotionally he is struggling so bad. At times my heart breaks for him and at times I just wanna cry for myself... How, how can I not manage to help this child emotionally!! How can we transplant organs, send people to the moon, have ALL the technology that we have.. yet NOT be able to figure out a medication that can possibly help his emotional state. I know it is difficult!! He is on a ton of meds and unfortunately they all interact, he has a liver that struggles along.. that is needed to process each med, and a transplanted bowel that we need to absorb as though it's his own. We are having NO luck!!! His liver numbers continue to improve. We will do labs again on Monday and as long as his numbers have continued to come down we will re-try Strattera. We will do labs every 48hrs to watch and see how his liver handles it. Their is only (((1))) reported case of acute liver failure!!!
***On a more exciting note... Dr. K says if he continues to eat and drink as well as he has been he can have his feeding tube out "when the pool opens" LOL!! He is so excited!!! This is something he really wants!!! I hope for his sake we stay on track and this can happen!!
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