Monday, October 24, 2011

October 23, 2011 - Day 22

4 months, 2 weeks, 4 days since diagnosis
day #31 of current hospital stay

Riker is officially engrafted. Her ANC count has skyrocketed to an impressive 2,250. This is nearly a normal count and a number she hasn't seen in a very long time. It's exciting and relieving and scarey all at the same time to hit this milestone. The doctors are now talking about preparing us for discharge. The doctors are saying it might be as early as next weekend. In hospital time, that might be closer to two weeks from now, though. I want to leave so badly but at the same time, I'm scared to death of walking out these doors.

The bone marrow takes a lot longer to start making red blood cells and platelets than it does to make white blood cells. Right now, Riker is still needing regular transfusions and will likely continue to do so for months going forward. This will mean long clinic visits in the future.

Tomorrow, we're going to start weaning Riker off the morphine again. They will slowly start taking her off the antibiotics she's been on and have already converted the anti-fungal she needs to remain on to an oral dose that she can go home on. I was surprised to find out that, if they "have to", they can convert Riker's morphine and ativan to oral doses, as well.

The cyclosporine that she is on to prevent graft vs host disease (GVHD) causes Riker to have high blood pressure so they've given her a patch that will be replaced weekly and will give her medicine to help regulate her. Pretty much, the only thing we really need to get Riker to do is eat again and then we're out of here.

I've offered her the bottle several times today and a few times yesterday. The good news is that she's not upset by the offer but the bad news is that she's not interested, either. I hope that in a day or two, she'll want to try a little food. When she's feeling better and taking some calories by bottle, I'm excited to offer her some solid food, too.

So... now... the next big transplant milestone is day #100. That's when we start to wean her off the cyclosporine. That's the halfway point to "normal" if all goes well. So... until then, we keep counting the days. We get out of the hospital, we find a place to call home, we go to clinic for blood tests, medicines, and transfusions. We try to find a new normal amid restrictions and isolation. We work towards living a life where we can push aside the fear and go on.

1 comment:

  1. I am so happy things are moving forward in a positive way for you. You have done an amazing job!! I will continue to pray for you all. Hope you find a suitable home soon.

    ReplyDelete