Emily came to the hospital on Tuesday. Each day we've thought she was going home. It will not be until tomorrow at the earliest. She has not been able to keep much down today. The team insists she needs to take this one medication. I've been refusing because she throws it up. Now she's also started throwing up the oral anti-nausea drug. We'd like her to take it orally because it won't be available by IV at home, but she's not keeping anything down anyway. After six days, we're a bit discouraged. We expected to see some major improvement by now.
It does seem that they are getting closer to answers.
Nephrology is CERTAIN it is RTA (renal tubular acidosis). They believe they have ruled out all the possibilities except distal (?!?) RTA. There is a definitive test that Emily will take once she is well that will prove whether or not she has this type. No cure, but easily treatable from what I understand.
GI is saying GO TO MILWAUKEE.
Pediatrics is not convinced it's RTA but they are saying it's a possibility.
I probably shouldn't say this publically but I'm not wild about her nephrology doctor. She has said two things that are beyond stupid. One was that we couldn't automatically assume every episode is caused by the same thing--Really! I've never had a child get sick for nine days every three weeks. That's quite a coincidence. Emily's been on the meds they use to treat this and still had two routine episodes. IF this is the problem, at what point will she start to respond to treatment? She also said that using this medication should improve Emily's attitude. WHAT?!? "She will be happier, not so unhappy all the time." Like I said, "WHAT!?!" She is NOT unhappy. She is loud, joyful, exuberant, and active when she is not sick. This is almost insulting. Please, check with me before you assume that my child behaves the same when she is sick as when she's well. I think the doctor is a lovely person with a fascinating accent, but VERY difficult for me to communicate with.
I'm a little frustrated with doctors ASKING to touch my daughter's belly. You KNOW you're going to do it, just tell her you'll make it quick. I'm also frustrated with people TELLING me I need to encourage her to drink. Maybe I look learning disabled but after riding this roller coaster for the last six months I know a little about hydration.
If you want my gut feelings: It may be RTA, but if it is, I think there's more going on. I'm ready to get off this particular roller coaster for a couple weeks.
My friend Rebecca is here recovering from surgery. We are so thankful that she is doing well. She'll need some chemo once she's recovered.
My brother Steve has been diagnosed with skin cancer.