Counting the Days
Allison is hanging in there...counting the days until transplant - July 30! I think Tam is counting the days, too, in a different way! Lol. Bless her heart!
Alli has lost weight, and we are fighting for every calorie we can get into her. Every bite possible gets doctored up to add calories or something to help her absorb the nutrients that are in the food she eats. She feels crummy most of the time but is generally a good sport about it. Her little tummy is not very little anymore - the liver and spleen take up so much real estate in there that her stomach doesn't have room for food, thus the decreased appetite and weight loss. Her bili is up to 17 so one medication for itching is no longer cutting it. We have added Naltrexone to her "diet." It's typically used to combat drug overdose, but a side benefit is it controls itching due to high bilirubin. She has been on the max dosage of Rifampin (again, typically used to treat tuberculosis, but with a side effect of itch control) so it was time to add a second drug. She is, of course, still taking Bactrim, a broad spectum antibiotic to prevent cholangitis, and Ursodiol to promote bile flow, as well as Ferrous Sulfate to boost her hemoglobin, Vitamin D3 drops and Centrum Kids Multi-Vitamin (that particular brand due to its unique mix of different vitamin levels) and MCT oil to help her absorb the nutrients in the little bit of food she does eat.
Tam's pre-op appointment is July 26 and we plan to be there for that, and just stay till surgery since there's really no point in driving home one day, be home a day and drive back the next in order to admit Alli to the hospital on July 29 to prep for surgery. We have a house (apartment) rented so we can keep our children with us as much as possible, as well has having a reduced germ population than at a shared facility, such as Ronald McDonald House considering that Alli will be on numerous immunosuppressants for some time after surgery.
Alli came and lazed in bed with me this morning after Austin left with all the other children to go to the job. It was fun...just "Alli and me"...and I wondered as I cherished the time...how soon after surgery will she be this content and happy and just relax with Mom? What are we really in for?! We have loved our time at home...with the underlying sense of something big about to happen...