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realisticdreams
member
Update :-\
realisticdreams
member
DD1 had her EMG testing last Monday. I had a couple of issues working up to the procedure and since they let me stay in the OR with her, of course I found a few more! (allergy bracelet took forever to be put on (like 2 hours), her hospital band was so tight they couldn't fit scissors under it to take off, the anesthesiologist was pushy, they wanted to drug her just to give her the IV, which she had numbing cream on for! I met 2 anesthesiologists and gave VERBAL med history and then in the OR a different one came in, that bugs me we usually meet all of them, some technical cord issues with the machine, and the nurse and anesthesiologists were snappy with each other..which was awkward)
But, anywho, her test showed chronic repetetive discharges, which she said was an old injury..so nothing to explain current issues. Meanwhile I have a 4yo who is slapping, scratching and beating her legs because of the pain/numbness/itching/whatever else is going on with them. Her neurosurgeon ordered another MRI which is the 17th. They again are talking about exploratory spinal surgery, I am really hoping SOMETHING shows up on the MRI, I really don't know if I can cut her open again and go through all that ICU time and recovery if I'm not SURE of what it is.
DD2 had a bunch of uro tests yesterday at the hospital and I didn't bring the stroller or wear her..I was shocked that she walked around the hospital all day, DD1 can barely make it from the car to the main level to get a transport chair. Kind of eye opening, her wheelchair is in & we pick it up next Tuesday!
But, anywho, her test showed chronic repetetive discharges, which she said was an old injury..so nothing to explain current issues. Meanwhile I have a 4yo who is slapping, scratching and beating her legs because of the pain/numbness/itching/whatever else is going on with them. Her neurosurgeon ordered another MRI which is the 17th. They again are talking about exploratory spinal surgery, I am really hoping SOMETHING shows up on the MRI, I really don't know if I can cut her open again and go through all that ICU time and recovery if I'm not SURE of what it is.
DD2 had a bunch of uro tests yesterday at the hospital and I didn't bring the stroller or wear her..I was shocked that she walked around the hospital all day, DD1 can barely make it from the car to the main level to get a transport chair. Kind of eye opening, her wheelchair is in & we pick it up next Tuesday!
So, basically we are back at square 1, like always.
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned
DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3
http://justthetipblogg.blogspot.com, The Neglected Blog.
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Re: Update :-\