Friday September 24 2010

Here's a slightly icky and mercifully blurred picture of Robbi's triple lumen central line, from her jugular vein into the inferior vena cava of her heart. Yes it even gave me the willies and I have had a few myself, but when its your child with one its a whole different story. This picture was taken just before they removed it.
Robbi finally got the last of 3 drains in her abdomen removed today, and later on she got her central line removed (neck). They do that right in her room. She felt so "free" to have nothing else tethering her down, except the IV pole to drag around. Shes up and walking frequently in the hall to get that fluid from surgery off her. She really looks like the "old Robbi" now, it's amazing. The steroids or one of her pain meds are causing her to have bad nightmares. Last night she got 4 hours of good, uninterrupted sleep.
She had some antibodies in her blood when they did some labwork that indicated the beginning of graft rejection (organ rejection) but her Dr. is on top of everything so he got her a medication they had to mix especially for her in the pharmacy that attaches to beta cells and stops the rejection process. I didn't explain it as well as the Dr. did but all is well. All of her medicine is by mouth now, except the insulin and her heparin shots and she is eating regular diet and eating a little more each day. PT came today and she started practicing stairs. She did fine.
They are still talking about her going home Monday or Tuesday at the latest. They still need to do teaching on doing her own bloodsugars and giving herself coverage insulin. The steroids cause her bloodsugars to be high and she needs the insulin to bring it down. Its only temporary until she is off the steroids but she was told she would be on the steroids on a low dose that tapers off for the first year after transplant.
Mike and Jamie brought Madi and Molly and Jamie brought her daughter to the Children's Place room [children under 12 are not allowed to visit patients up on the floors, so they have a special room where patients can come down and see their kids] and Mike went upstairs and brought Robbi downstairs to see the kids today. They were surprised to see me, and really happy to see their Mommy. It did Robbi and the kids a lot of good. Jamie has been such a great friend through this hospitalization, watching kids on a moments notice, she's such a sweetie.
[The Children's Room also has a camera in it, and patients who can't come out of their room and downstairs to see their children (or relatives) can see them on a special channel on their room TV. I think that's kind of cool]
That's all our news for now.

Robbi's Mom