Her fever broke during the night and her diarrhea slowed to almost a complete stop by this afternoon. She looks so much better!I was so happy to see her smiling face when she woke up. She even let me give her a bath and do her hair she was feeling that much better!
The test results have all come back negative other than her ear being infected which is very odd since there is NO draining whatsoever and she has tubes. They tried to say the whole sickness was caused by this but I wouldn't buy it. I was able to convince her doctor, telling him that she gets ear infections all the time and they NEVER come with vomiting, diarrhea and fevers. He agreed after looking into her healthy looking ears.
I asked him if we should keep her on the Megace(the appetite enhancing med which is full of female hormones) or put in a button. He was all for the Megace and told me we should keep her on this until she's off her immuno-suppressants in June..."Then, if she stops eating again we can work on the 'behaviors' that are causing this". The mama bear in me came out and I looked at him and said(as nicely as I could of course) "This is NOT a behavioral issue! She eats when she is hungry, this is not a power struggle problem." He just looked at me and said, "Well, it might be true but she is also on Concerta which is making her not hungry too. If you can just get her behaviors worked out then things will work out I am sure."
This has been a discussion and concern since last summer...I have struggled with not wanting to take her off it because she has done so well AND I saw absolutely NO change in her eating when she started it. She has never been a big eater!
Anyway, as I was venting my frustrations to Matt, going on about how stubborn this doctor is, a little voice came into my head saying, "Maybe you are letting your own pride get in the way, remember to be humble."
I have been really trying to listen to what is best for Emily and not just try to be "right". I am also really trying to listen to the spirit with what is best for Emily...Megace or a button. I asked our SCID email group and got quite a horror story from one of the moms on the horrible side effects, one in which shows that it inhibits T-cells to develop!...Isn't this what we are trying get MORE of?
Even though the doctor is pushing Megace, if we feel the spirit telling us to do the button I've got to be brave and just tell the doctor this is what we want to do.
Sorry for rambling, can you tell I've been in a hospital room ALL day?
Emily has had such a wonderful attitude today. At times she would tell me she was feeling yucky all over. One time she stopped coloring and said, "Mom, do you see how happy I am?"
"Mom, I am feeling pretty yucky but I am trying to be happy and make the best of it."
Another time she stopped her coloring and said, "Mom, can we say a prayer"
After her sweet prayer asking Heavenly Father to help her get better so she can go home tomorrow she was like a little girl on a sugar high. She was singing and dancing telling me she had so much energy she couldn't get rid of any!--The faith of a child :) I am seriously amazed at her maturity!
Emily's highlights today were Mike (the child life guy) coming in and seeing her. a huge dog coming to see her AND another child life friend coming in to make bracelets, sand art, and lots and lots of coloring things! She was busy all afternoon and evening!
It has been a good day.