Tuesday, March 02, 2010

Clinic news

So, Dr. Alonso agreed that gastritis can cause abdominal pain, but not the kind of gastritis caused by portal hypertension. She believes (is hoping?) that Shelby's abdominal pain is a motility issue that a new type of med will help. She is e-mailing a GI here in Chicago and Dr. Deutsch so they can work together deciding what med to put her on. We are to give it about 6 weeks. If we see no improvement after that time period, then transplant talks will start. It would have to be a living donor because she would be no where on the transplant list - not w/her type of complications. Jaundice, poor growth, bleeding - those issues would put her on the list, but not Shelby's issues. Dr. Alonso, though, feels that if we cannot get this pain under control, then Shelby's quality of life is being compromised (many, many, many weekly/daily trips to the nurse's office for tummy pain, laying in bed at home when her tummy hurts, not wanting to play when it hurts - a LOT of missed school) and, along w/her other side effects of liver disease, it is time to get her transplanted. She said Shelby's time is getting closer, no doubt, w/the severity of her portal hypertension. Dr. Alonso is very impressed w/Shelby's excellent growth & muscle tone. Some things we're starting to see in Shelby were evident early this evening as we took her to a "Family Jump Time" at Pump It Up here in Chicago. Shelby played (hard) for about 20 minutes then just looked like all her steam had been let out. She sat, was very quiet, and we needed to go out in the lobby and sit w/her for a while. We told her it was o.k. if she couldn't play any longer, but she just wanted to rest for round 2. And she did. She never needed that rest before; now she does. She also was very winded as we were walking outside later on the way to supper. These are little signs that her liver is crappy. No other word for it - it sucks. I just want my little girl to not have pain. Dr. Alonso did say that kids w/GI problems did have a lot of pain, but kids w/liver disease alone did not have pain, but very threatening complications. We'll see what this new med is and pray that it works.

We are at the Kohl's house for the night and will be going to see Dr. Langman in the morning. I'll update on that news tomorrow. Night.

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