Thursday, July 31, 2008

Day +5: Update from Susan

Sorry for the delayed update on Sarah. I pretty much manage the blog and Susan and her father replaced me at the hospital Sunday (Day +2). I've also been busy over the last few days trying to get things ready at home for Sarah's eventual return.

-The below update is from Susan...
Sarah had a good day today. She played with toys and went to the playroom twice. I even managed to get her to eat a tiny bit, three bites of chicken noodle soup, a couple licks of ice cream, and a piece of chocolate. Wow! Right now she is playing with her Papa reading a pop up book. To turn the page Sarah says "ready set go!". Pop up books are so fun.

Yesterday wasn't such a good day. Sarah threw up about six times and had a noticeable increase in pain from mouth and throat sores. So we asked the Doc's to put her on a morphine drip. That means she gets a continuous supply of morphine through her IV line. She started at a dose of 0.1 mg. A very low dose. It seemed to make a difference yesterday but today when she woke up her face was SAD. When I asked her how she felt on the FACES pain rating scale she was the saddest face, a 10. So we upped her morphine drip to 0.3 mg. The little extra dose has made a big difference for her. She seems much more comfortable.

We had a little excitement yesterday when Sarah broke one of the connectors for her tubes. She was getting down off the parent bed and the tube went smack, right on the floor. She had an alarmed expression and so I said it's OK Sarah no big deal. When she continued to look at the tubes I realized it wasn't OK and the white lipids, that supply her fats, were leaking onto the floor along with her blood. I quickly told Dad to "press the nurse button and go get the nurse". He ran out in to the hall and said, "we need help". Boy did they come fast that time! I guess that happens all the time. But it sure was alarming seeing Sarah's blood dripping down from the opened tube, and knowing that anytime those tubes are opened they pose a risk for infection.

She has started to lose the rest of her hair, just a little at a time right now. Her mouth is starting to look a bit strange as a result of the conditioning, red gums and the inside of her cheeks and the roof of her mouth is starting to break down. There is some swelling and white patches, and the beginning of the red sores.
-End of Susan's update

The doctors tried to brace us for the need to administer morphine to Sarah. The pain would be pretty unbearable for her if not for the morphine. We were not excited about giving it to her,but the time came to do so. Please pray it will continue to be effective and that she will not need to be on it long. One of the biggest risks with Bone Marrow Transplants is infection. An infection can move pretty quickly in a person with no immune system. It is one of my biggest concerns at this stage of Sarah's treatment. I know she is in a solid medical facility with top notch medical folks, but continued prayer for her is much appreciated.

I go back to the hospital tomorrow, Thursday to replace Susan and John (Susan's Dad). By the way, Betsy is doing great after donating her marrow last Friday. She seems 99% from what I can tell. The other children are looking forward to seeing their mom again tomorrow.

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