We successfully made it to Pittsburgh Children's on our 3rd attempt. Third times a charm indeed.
As soon as we checked in and got to our room (735) in 7B (ICARE), it all started. Yes, the minute we got there, the evaluation process started. Kenji was assessed from head to toe, had a EKG done and blood was drawn. Various transplant team members dropped by throughout the day to meet and greet us. We continued our week with xrays, unltrasounds, MRI, and daily blood work. We also had a 2-3 hour educational session. It made the whole transplant thing soOo much more clear. At the end of our stay, the transplant surgeons told us that Kenji has only 8cm of bowel and about 45% of colon left. The transplant team doesn't think that rehab will help Kenji with that little of bowels left and he wouldn't be a good candidate for STEP(a lengthening procedure); it would take more than 1 or 2 or 3 to procedures to give him enough bowels. Transplant will be Kenji's best bet for a good quality of life. We were also told that with his size being so tiny, the wait will be much longer than a adult. Roughly, 18 months or so. We are to travel back to Pittsburgh every 6 months for follow up till a donor comes available and after the transplant, Kenji will be expected to stay local to Pittsburgh for at least 6 months. I will stay by his side during that time and Dad will drive up every weekend or so to be with us. Dad and I have talked and during our wait for the transplant call, we will try rehab anyways. Even though the Transplant Team doesn't think Kenji will benefit from it, we still want to try. As of now, we have Boston Children's Intestinal Rehab center at the top of the list. It's a matter of saving up money to make it there now :)
I will be opening up a "Hope" fund for Kenji soon. We will use that account to assist with cost associated with both rehab and the transplant. I will update again once that's in place.
As soon as we checked in and got to our room (735) in 7B (ICARE), it all started. Yes, the minute we got there, the evaluation process started. Kenji was assessed from head to toe, had a EKG done and blood was drawn. Various transplant team members dropped by throughout the day to meet and greet us. We continued our week with xrays, unltrasounds, MRI, and daily blood work. We also had a 2-3 hour educational session. It made the whole transplant thing soOo much more clear. At the end of our stay, the transplant surgeons told us that Kenji has only 8cm of bowel and about 45% of colon left. The transplant team doesn't think that rehab will help Kenji with that little of bowels left and he wouldn't be a good candidate for STEP(a lengthening procedure); it would take more than 1 or 2 or 3 to procedures to give him enough bowels. Transplant will be Kenji's best bet for a good quality of life. We were also told that with his size being so tiny, the wait will be much longer than a adult. Roughly, 18 months or so. We are to travel back to Pittsburgh every 6 months for follow up till a donor comes available and after the transplant, Kenji will be expected to stay local to Pittsburgh for at least 6 months. I will stay by his side during that time and Dad will drive up every weekend or so to be with us. Dad and I have talked and during our wait for the transplant call, we will try rehab anyways. Even though the Transplant Team doesn't think Kenji will benefit from it, we still want to try. As of now, we have Boston Children's Intestinal Rehab center at the top of the list. It's a matter of saving up money to make it there now :)
I will be opening up a "Hope" fund for Kenji soon. We will use that account to assist with cost associated with both rehab and the transplant. I will update again once that's in place.
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