Hey blog friends,
We are currently admitted to St. V's for a 24 hour PH probe. We came in yesterday just before lunchtime so its almost time to go home! Despite all the GI testing we've had done, both girls have never had this test done before - mostly because when you are vomiting 10 times a day and screaming and arching, there's no need for a test to tell you that you have reflux.
But now with the G-tube surgery looming, they pondered the idea that Audrina may benefit from a fundoplication as well - these procedures are tolerated better when done at the same time. A fundoplication is a surgery to prevent refluxing. However, it also has its own risks and seems to be about 50% lifesaver and 50% worst medical decision ever according to families I have talked to who have gone ahead with the procedure. I have reservations, so the first test in the process to decide is to quantify how much acid reflux is actually happening.
Here is a video describing the procedure:
I also learned something new from this - you can reflux and have it not be acid reflux. Audrina had a huge choking and turning blue episode this morning, oxygen desatted, she finally vomited and I panicked - but she never cried. And the monitor never showed any acid. So it will be interesting to hear GI's opinion on what this is.
Also, while awake, her ph is 6.5-8 which is normal. But when asleep her ph dropped to between 4-5 which is fairly acidic. But instead of rising and falling in episodes, in tended to stay that acidic for long periods of time. More autonomic difficulties? When she finally woke up, it shot right back to 7-8 again.
Very concerned about her kidney issues again - she was dry at midnight, dry at 5 am, and then finally peed a measly 50cc's. But it was syrupy thick and yellow and terribly stinky. I'm worried about her.
:( This has been going on for months and we still haven't even seen a doctor about it... hopefully the Mott consult happens quickly.
Audrina is a favorite of the nurses up here and people swing by our room when they come onto their shift and ooh and ahh over how much she's grown since her last admission. It's such a comfort for me to have these incredible nurses who know our family, know the girls complicated history and respect my decisions about them.
I explained to the nurse why I didn't want her to call the attendings about the urine. We already were blown off by the nephrologist here and I don't want to spend another week here only to get no answers and the stress it puts on our family is enormous. She agreed and said she knows I have it under control and our doctor is aware of it so she respects my decision to hold off on drawing attention to it 5 minutes before we are set to be walking out the door.
Addison got to spend yesterday and today with a friend who has a son the same age who also has some GI troubles. They have been getting along marvelously and she's enjoying having a friend!