This morning was full of information, mostly frustrating information. I hesitate to post it here because I do not want to be the Grinch and share my frustrations with others, but I know that there are many of you looking for updates. So, here it is…
Friday’s blood tests came back today and her bilirubin and liver enzyme levels continue to drop some.
Also, her Hepatitis A and B tests were repeated on Friday. Both were NEGATIVE. She does NOT have Hepatitis. Yes, that IS fantastic news, but…..
What she does have is an IV antibiotic that is known for causing liver issues and symptoms of hepatitis and “clinical hepatitis.” Aaron, being the investigator he is, found this link today and we passed it on to her nurses and doctors. http://livertox.nih.gov/Meropenem.htm Fortunately, she is being taken off that antibiotic today and placed on another, but honestly, that was planned days ago. Her doctor here in Vegas talked of taking her off that med weeks ago but she was staying infection-free on it, so we kept her on it since the transplant was so close. The irony – the prescription that caused her high liver enzymes and bilirubin was the medicine we were crediting for keeping her well…..
Because her risk of illness/infection is so high due to the nature of Aplastic Anemia, she has to stay on an antibiotic. Her new antibiotic will not be given through her IV catheter. This change will hopefully result in a more rapid drop in her bilirubin and liver enzyme levels.
While talking to the nurse coordinator in CA at COH today, she informed me of a late Jan admitting date and an end of Jan transplant date. Last week, I had originally been told the transplant would be delayed 2-4 weeks. The dates she gave me today give us a 5-6 week delay. I am totally less than thrilled. In fact, I will be making some calls on Thursday, you know, when everyone at COH returns from their Christmas break, to push the issue to try to get the transplant moved sooner. That late January date was scheduled when they believed she had hepatitis. Now that we know she doesn’t have Hepatitis, why risk her getting sick by delaying that long? I need someone to convince me that such a delay is in her best interest.
I am thankful that we will all be together for Christmas. I was able to sneak off to buy some stocking stuffers that everyone will love and be surprised by. The stocking will be hung on the steps with care and the kids will think that Santa was here, again. 🙂
Naomi seems to be in good spirits, unless it is time for her injection. (We started the injection again because it helps boost her immune system to protect against illness.) She has a good amount of energy and dances and plays her way through the days. It is unnerving how “normal” giving your child a IV every 8 hours can start to seem to her. When I give her the morning dose, she smiles at me as I wake her while attaching it. I told her about the new transplant date and she did roll her eyes and sigh when I told her that the transplant is another 4 weeks off. She is most anxious to become transfusion-free. Being transfusion-free will lead to getting her catheter out of her chest and allow her to start doing gymnastics at home again. Aaron and I helped her wash her hair in the bathtub last week and we all laughed when we were able to wash her hair by having her do a back-bend in the water. She told me that she dreams of doing walkovers. I dream of watching her do them, again.
We appreciate all your support and encouragement. Our mailboxes are filled with greeting cards and we like to read back through the guestbook posts here. It helps us to not feel alone through this difficult journey. We wish you all a Merry Christmas!
2 thoughts on “New Transplant Date”
Lots of hugs. Sorry for the frustration of the antibiotic being the cause, but glad that she doesn’t have hepatitis. We know too well about meds creating additional problems. Praying that you can get the transplant moved up sooner. Hope you have a wonderful Christmas.
Thank you, Christi! Happy a wonderful Christmas, too. 🙂