While I'm still waiting for results to come back from Haven's sleep study and MRI I did receive a phone call from her Oncology nurse that her IGG levels have dropped down to low and she will need to come in for a dose of IVIG. I can't get in to what an IGG is....way too complicated but it's the immune system. :)
The IVIG dose usually runs 6 - 7 hours - depending on how her body wants to react to it. Sometimes she's good and can take a faster drip and sometimes she needs to take it slow.
Haven also failed her immune test done in February. It takes at least 6 weeks to get this test back. This is, however, what the doctors expected as she is only at 9 months since Hi CY.
We will be at Hopkins all day Monday. We will first visit with her therapist at 11am and then at 1:30pm head to Endocrine for the 6 month follow up. I have a few questions for him and want to review some theories so it should be a good visit.
I figure if I don't get results from him on Monday for both tests then I'll start calling around again. Even if a test is good I think some one should call and say so.
Subscribe to:
Post Comments (Atom)
-
Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
-
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
Dear Misty,
ReplyDeletePraying that tomorrow Haven will get good results and that you'll get some answers to the questions that you have.
Please tell Miss Haven that I said hello and that I'm sending her BIG HUGS!
With caring prayers,
Wylene