It has been an emotional week plus. We went to Phoenix for a follow up (on June 27th) and felt that Alice was doing quite well. The nutritionist had reduced the feed lengths and we were adding table food. This might not seem like a big deal but when you have a child start out with a feeding tube sometimes they have an aversion to the oral feeding. Weight has been a concern and not only had she been gaining weight she had rolled over and was sitting up on her own – achieving milestones delayed previously due to her health issues. (You can see her sitting up on the Round Table takeover flyer)
We were surprised when her bloodwork came back and her bili levels had increased from 2.5 to 8.1! She has an infection and the bile duct (created surgically) is inflamed not allowing the bilirubin to drain and increasing the level of the bili in her blood. Bili in the blood makes the baby itchy and can lead to brain damage if the levels are high enough. Since last week, Alice has had several procedures to install (and fix) a PICC line for intravenous antibiotics. Alice has an interrupted Inferior Vena Cava and the PICC was ultimately removed due to repeated kinks in the line. She is getting her antibiotics through her Gtube at this present time.
We have a lot of unknowns currently….beginning with how the long the stay at Phoenix’s Children’s Hospital might be….whether Alice is big enough for a living donor…and recently the discovery of a precancerous nodule in her liver. She just needs a liver so badly! There is dialysis for failing kidneys and replacement valves for hearts but….she can only wait to become more ill to rise on the waiting list for cadaver pediatric liver. With the UNOS distribution rules children are not given priority, so the challenge is to wait and remain hopeful. Yesterday, we found out that her bili levels had INCREASED when they should be coming down due to the antibiotic treatment.
We so appreciate all the support and love we have received! Please continue to keep Alice and our entire family in your prayers. We really need the inflammation to come down to buy her more time to get to transplant.