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Wednesday, August 24, 2011

So Dr, Fisher said that the IRP team has been seeing her for a year now. All the test that they have run have given them no answers, no definition to her Autoimmune enteropathy diagnosis that Cincinnati gave her 2 years ago. Nothing that they have tried to do has worked for her to get her to tolerate her feeds. or eating orally. She is fully dependent for 22 hours a day on TPN with lipids. (No that is not her rolling backpack for school she is carrying around, it is about 10 pounds of her daily nutrients and calories being pumped into her heart) The other 2 hours of "Tube free time" she has Ethanol injected into her central line to keep her from getting another life threatening infection. They are stopping her anti-rejection meds and weaning her off her prednisone that she has been taking for 8 years. They want to "clean the slate" and see what her body does, since "they" themselves have never seen Hannah have over 30 bouts of diarriah in 24 hours, or puke up everything she eats, and been in a normal pain scale range of between 6 - 8... daily, her "clean slate" normal! I do not look forward to the next few months, having to watch her live a life of being Undiagnosed is more frustrating than if I had to live with myself. At 10 years old Hannah is the strongest person I know!
 So we call in her weight weekly and then they will plan on surgery for scopes and biopsies to see what her Lil 27 kilograms body does on it's own, when it fully rejects her stomach and intestines, Please pray for her.

Hannah at her IRP appt. August 23, 2011

Sunday, May 08, 2011

Hope 4 Hannah Benefit

For more details go to
Facebook group           Hope 4 Hannah
click here to RSVP      H4H Benefit

Friday, March 25, 2011

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!

Sunday, January 30, 2011

I Love my tubie :)