- Tue, Oct 25, 2005 /
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There has been a lot of developments with Ally in the past couple of days, which is why we decided to wait until today to update. I'll try to start where we left off.
Today Ally had a PICC line placed which is a peripherally inserted central catheter. This was placed in her arm and is held in place by a dressin not a suture like a central line. It was placed with ultrasound guidance and they obtained access fairly easily. Now she will have her central line removed. Since the bacteria Ally had never grew from trache cultures they had to assume that the line was the source of the infection. She will now have this PICC line for approximately one week and than hopefully they will be able to place a new central line.
Of course all of this depends on her cultures for the next couple of days. They will draw a new culture from her PICC line. If this would grow the same bacteria than they would have to begin treatment with an antibiotic and hope that they find one that will kill the bacteria. Again, Ally has still not been acting sick, she has been just as happy as always.
Onto the heavy stuff! On Sunday we had a lengthy discussion with Dr. Casas, one of the transplant surgeons here at duPont. She informed us that she feels Ally is in a chronic state of sepsis (infection) and that it would be in her best interest to be taken to Children's Hospital of Pittsburgh for a consult on a small bowel transplant. This is the news that Shane and I have feared all along. The small bowel is the most difficult organ to transplant and they haven't been done long enough to even see long term survival rates.
Currently there are only three intestinal transplant centers in the United States and Pittsburgh's is the world leader. We are hoping Ally will go sometime in November for her consult. This is a week long stay with Ally as an inpatient and she has numerous tests performed. Shane and I will be meeting with tranplant coordinators, surgeons, social work, and psychologists. We are hoping maybe our parents can go to so that they are informed and can help us take Ashley.
I am adding a link for Children's Hospital and you can read more about the transplant and there facilities. The docs there were informed of the bacteria that Ally has and said that they would still consider her for transplant. We hope to have the date for her consult later this week. As for now Ally will remain here at duPont until they are able to place a new central line and until they have cleared the bacteria or at least have exhausted all attempts of clearing it.
Please pray for a miracle!