Tuesday, June 28, 2011
You Want To WHAT....
Today we got the results of Devin's stool samples and they were negative for fat... So he is NOT malabsorbing.. OK great... NOT! Then why is he loosing weight?? 6 pounds in total!!
I sent a e-mail to the transplant center explaining how wonderful Devin is doing... how his stool was negative :) how he is eating EVERYTHING in site... pooping every other day... formed to semi-formed stool (AMAZING in and of itself)... NO complaints of belly pain and no vomiting... EVERYTHING that makes me happy happy happy and makes our world run smoothly!!!
Approximately an hour later the phone rang... GT site closure for Tuesday is off!! WHAT?? Dr. K thinks we might have to go back on night time feeds... WHAT?? Wait, did you miss the part of the e-mail that said he's NEVER been better... Have you forgot that we have NOT had pneumonia since we stopped feeding him through his feeding tube... Have you forgot he has NOT required insulin since then too and his hemoglobin A1C is perfect... Dr. K feels he needs to be scoped!! Why? call me stupid or naive.. but, can their be something wrong when things are so good?? Well, yes!! Chronic rejection can be very silent!!! plan on a scope next week!!!
So, tomorrow I am going to call and talk to my local GI team and beg some Splash out of them... a high calorie drink ASAP!!! we are going to start drinking "fat" milk, as Devin calls it by the gallon.. I HAVE!! to turn this around ASAP!!!!
Any and ALL suggestions welcome!!!
This kid is FINALLY free of ALL medical devices!! PLEASE God help us do this without putting his GT back!!!!!
ALL these photos were taken in the last 24 hrs... and this is why we LOVE Summer!!!!
I sent a e-mail to the transplant center explaining how wonderful Devin is doing... how his stool was negative :) how he is eating EVERYTHING in site... pooping every other day... formed to semi-formed stool (AMAZING in and of itself)... NO complaints of belly pain and no vomiting... EVERYTHING that makes me happy happy happy and makes our world run smoothly!!!
Approximately an hour later the phone rang... GT site closure for Tuesday is off!! WHAT?? Dr. K thinks we might have to go back on night time feeds... WHAT?? Wait, did you miss the part of the e-mail that said he's NEVER been better... Have you forgot that we have NOT had pneumonia since we stopped feeding him through his feeding tube... Have you forgot he has NOT required insulin since then too and his hemoglobin A1C is perfect... Dr. K feels he needs to be scoped!! Why? call me stupid or naive.. but, can their be something wrong when things are so good?? Well, yes!! Chronic rejection can be very silent!!! plan on a scope next week!!!
So, tomorrow I am going to call and talk to my local GI team and beg some Splash out of them... a high calorie drink ASAP!!! we are going to start drinking "fat" milk, as Devin calls it by the gallon.. I HAVE!! to turn this around ASAP!!!!
Any and ALL suggestions welcome!!!
This kid is FINALLY free of ALL medical devices!! PLEASE God help us do this without putting his GT back!!!!!
ALL these photos were taken in the last 24 hrs... and this is why we LOVE Summer!!!!
 |
 |
| Create a free collage |
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment