So today the nurse cordinator called me from Omaha. I quickly caught on to that sound in her voice as she tried to pump me up with encouraging words about this Transplant eval. I relived a few weeks a go when they were wheeling her into PICU and the "Team" of docs ( who just a few months ago also said They WERE the last resort) That we may never know what Hannah"s exact DX is and that everything they do beyond this is experimental.
So why Transplant? Well they do know that Hannah's immune system is rejecting her own intestines. Because of the lack of nutrition because she absorbs absouletly nothing she eats, She is dependent for her total calorie intake apon a 2 liter bag of TPN that runs 16 hours a day. This has to be ran through a broviac central line that runs to the valves in her heart.
The problem is they have tried antirejection meds with no theraputic results enough to get her off the TPN in 2 years. hannah has had several life threating infections and line issues that has caused her 15 line placement procedures. which is where lies the even bigger problem. When she loses a line she lose that access point. she is very seriously close to losing all access.
So then the next step would be to try a transplant of her organs and hope that she does not reject that too. Bone marrow transplant is still on the table but there has been no surviving pediactric patients for them to really know if this would be beneficial for her or not. The reality is she only has a 60 percent chance of surviving a year with the bowel transplant. All i can hear is 4 years ago the docs telling me she wouldn't make it to 10. She turns 10 in June. I am not ready to let her go! We will fight to theres no fight to fight!
