Sorry its been so long. Since she had her Hickman placed (yay-no more IV pokes or blood draw pokes!)Elle has had a variety of issues. She was only in the PICU for a day and a half, but later de-satted again (not enough O2), fever 1 night, had leakage from around her Gtube, vomiting, diarrhea (and all the same color, disturbingly - but Tim R. says it is a hospital phenomenon). She also had many days of pain, sometimes four hours of crying, even screaming, and we couldn't find the cause. We were also chasing down the pain medicinally, which is a difficult balance. By the time we finally calmed her, we also snowed her so for several days she was either crying or out. We think it was a combination of things causing her discomfort, and a couple of front teeth are finally popping out! We did get the pain control right also with a fentanyl drip and fentanyl boluses and / or oxycodone for breakthrough or dressings. She is herself again, thankfully. She is smiling, examining her little world and enjoying all of her toys again.Elle paying with toys
She has CMV in her lungs, they are calling a pneumonitis for which she is getting gancyclovir (antiviral) and IVIG (to boost her immune system); seems better now after many days. She had a GFR also to test kidney function which was basically a contrast injection of sorts with a baseline blood draw and I think 3 other blood draws at intervals. It turns out she does have some decreased kidney function, which is not unusual for EB kids, but when she starts chemo, it will be dose reduced.
She is scheduled Friday to start GCSF (Neupogen) which is a growth factor to stimulate production of white blood cells. She will get this for 5 days then they will pherese out her own cells and store them in case the donor cells do not "take". The autologous platelet pheresis should be Wednesday.
Pops have gone home :( but Dad and Bonita remain until Ma arrives on the 11Th (9/11 -hope airport security won't be bad). Steve is going home probably Friday for about 10 days. It will be hard without him.
Chloe is doing great. We do have a lot of fights as she is very strong willed and three. But in between she throws her arms around us and says she loves us. We in turn try to be patient, spend quality time with her as often as we can and our parenting techniques are evolving. She is very creative, sociable, enthusiastic and a great sense of humor. She is definitely our comic relief. Dad says that one granddaughter makes him cry while the other one makes him laugh -true, true. The other day she went to the play room and when the volunteer asked her name, she replied, "Dr. Pop". They just about fell over with laughter.
Oh, almost forgot! Elle's G tube was nicked by a family member while cutting bandages last night. I won't say who, but he felt really bad and his name starts with an S and ends with a teve. Its holding for now, but changing it out sh9uldn't be too big of a deal. GI has not given the final word. no surprise there, GI has been really slow to respond.