It's Time...

It's time.... at least that's what the doctors are telling me....
This morning I left a message for Elizabeth's Miller Children's Hospital Infectious Disease doctor, Dr. Michalik. Michalik is what most people call him, but Liz and I call him "Dr. Cute." Very, very professional! I wanted to let him know how Elizabeth is having more bleeding than she was, more pain, and a decrease in food intake. She is just not well at all.

Dr. Cute called me back late this afternoon and told me the following:
He spoke with the UCLA Infectious Disease team and they are recommending Liz have the fecal transplant. You may remember that the plan -even as recent as Friday- was to have her finish this current medication, Rifaximin, and if this failed then she would start a new drug called Difficid. Difficid has not been approved for use on children and it was only approved for use by the FDA in April. I learned today though that not only has it not been approved for children, it is currently going through clinical trials, so not even that has been completed. Given the seriousness of Liz's case, her doctors said that if she was an adult or even a child who weighed more than she does, they would try to come up with a dosage for her. Given her low body weight and the fact that it has never been used on a child, the team feels it is too risky to try it. So, we're left with literally no other option than the transplant. Her case is serious and the doctor said that they are worried she may become more serious (damage to her colon or intestines), so the process is underway.

I hesitate to explain what the transplant process will be because I don't have all the facts or plans myself. It has never been done at UCLA but there is an Infectious Disease doc there who has some kind of experience with it. Their team is meeting to talk about how this will all happen and the hospital is presenting it to the Ethics Board and such for approval. I have been told she will need to go through more scopes and testing. The donor must also go through testing to ensure that she doesn't carry any disease, which is especially important given Liz's weakened immune system. We've been told that Kate will most likely be the donor as she is healthy and given that they are identical twins, she has some markers that would help.

That's about all I know. I have been hesitant to go along with the idea of transplant, but knowing the conservative doctors are recommending it, along with how sick I see Elizabeth getting, confirms that it is the right thing to do. I just want some normalcy back for her. I want her to go one day, no, everyday, without pain.

If you see the girls, please don't talk to them about the transplant until I let you know that I have told them it is going to be done. They have known about the possibility and understandably it is an awkward, gross idea to them. Until the meeting with the UCLA team, I am going to hold off on telling them. Thank you.

Our prayers now are for wisdom for all the doctors who will be helping Elizabeth. This is a very big deal and I just want the team to be prepared and confident. I know they will. We are also praying Elizabeth hangs in there until the transplant...pain controlled and able to eat and drink enough to stay out of the hospital. Pray also for her to stay healthy otherwise so that her immunity be the best it can in the time leading up to the transplant. Lastly, we pray for her mental state as she is frustrated to still be sick and feeling worse, and sad to be stuck home. She misses school and I am driving her crazy by simply breathing the same air she does during the day : )

I am grateful for your support and prayer.