Good Day :)

Submitted by Colleen and Derrick on Tue, 03/17/2009 - 6:38pm.

Devin has had three full meals today... First was breakfast.. scrambled eggs, toast, and oatmeal. Lunch and Dinner was chicken and mashed potato.. He did an amazing job!! He chewed and swallowed everything as though he has been doing it for years... He has had no belly pain and no increase in drainage.. So far so good :)
He is tolerating 60 cc an hour of formula. Keep in mind this is the boy who couldn't eat anything because of belly pain, vomiting, and diarrhea.. He also tolerated nothing through his GT for the last 7 months and before that 100 cc total per day was alot.
As per the Dr's we will continue moving forward... until we reach our goal.. or Devin's body tells us differently.. 80cc and hour over 20 hours a day, is our goal. The ultimate goal is, to stop giving him TPN (his IV nutrition) He will get his calories from formula... Then step two will be to wean the formula and have him eat enough by mouth...
****** One Step At A Time******One Day At A Time******

Biopsy # 6 Is Done....

Submitted by Colleen and Derrick on Thu, 03/19/2009 - 12:24pm.

Biopsy # 6 is done.... Dr. K says it looks good and he has some good poop in there... LOL yes, our life has come down to how poop looks... Great night without TPN... As per Dr. K this morning, TPN is a thing of our past! :)

Okay... HUGE news....
** tomorrow Friday we are do for discharge to the apartment at 2:00
we will go home on feeds ONLY... NO TPN!! Devin needs to take about 600 calories by mouth..
** We will be seen in clinic Mondays and Thursdays
** Biopsy's will be done once a week (on one of those days)
** Labs Mondays and Thursdays (and whenever needed)

If EVERYTHING goes well and we transition without any set backs, we possiblely can go HOME in two weeks.... :) I am hoping by Easter...

***we have a lot to accomplish... and some hurdles to get over.... ***

~~~~~~~~~~ONE STEP AT A TIME***ONE DAY AT A TIME~~~~~~~~~~

PLEASE KEEP THE PRAYERS COMING......

HIP HIP HOORAY!!!!!!

Submitted by Colleen and Derrick on Fri, 03/20/2009 - 3:33pm.

We have officially been discharged from the hospital... We are settling into the apartment.. Getting things organized.. LOL for those of you that know me and my OCD.... I need EVERYTHING organized.. We can not afford to make any mistakes! We have alot of meds to be given and output to monitor. Devin was so excited to be leaving the hospital to go to the "hotel" aka apartment and what a terrific send off we got... May our first night be boring and relaxing...