We are ready!
Spoke with Pat at Mt. Washington Sleep Lab and we're all set to go. They have Haven's room ready so we'll be there by 8pm Saturday evening. Pat said she'd missed us because it's been 6 months - I had to reschedule this appt a few times.
Confirmed with MRI today for Haven's appointment on Monday. We have to be there at 7am. They have promised that it IS in her files to use her PORT ONLY for the IV. I better not see a bunch of needle holes and cables wrapped around a leg or arm when she comes out. I already know they will intubate her during the procedure. This is going to be a 4 1/2 hour MRI which is too long for her to be under anesthesia without assistance. So I have promised them that I will not argue about it as long as they don't threaten to automatically keep her overnight!
And they have Haven listed as a "Frequent Flyer" in her records at MRI. So I'm wondering if after so many hours does she get a free MRI????
We also have an Endocrine appointment this month on March 22nd. I'm excited to get in there to talk with him. Oncology never talks to us about Haven's growth hormone or prolactin or anything like that because it's not their deal - it's Endo. Plus I want to discuss my many random theories. Plus my MRI request was for the head and particularly the pituitary area so he'll be able to discuss that with us.
After that it's another trip to Pulmonary and our normal Oncology visit! I have to set Pulmonary up after the sleep study.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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Dear Misty,
ReplyDeleteStill praying that the sleep study and MRI will briing good results for Miss Haven.
Please tell her that I'm sending her lots of big hugs! ((((((((((((Lots of Big Hugs!))))))))))))
With caring prayers,
Wylene