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It went a LOT better than I expected. They always let me go back with him until he is under anesthesia and they rush me out so than can intubate him. He didn't cry this time. He whimpered a bit because he was scared but as long as I held his hand he did really well. :') We did have one snafu because they forgot about his egg and soy allergies and had planned on doing the half knock him out stuff but since he had the allergies they have to do general anesthesia and intubate him. We got to wait 30 minutes because they didn't have the right meds for him. When he was waking up he had a really hard time keeping is 02 sats above 82. That is the oxygen saturation in the blood and it is supposed to be 95+ in a healthy child. Since he had the mycoplasma pneumonia 2 weeks before he was still getting over it so I have to keep him crying to keep him moving enough air. If I let him stop crying his 02 sats dropped to 82 but if he was crying they would get to 87. After about 30 minutes he was finally couging up gook that was in his lungs and he got his sats up to around 95. After another 10 minutes they stayed above 95 and they got him unhooked, he drank some juice and got to go home. We won't have the results until Jan 25 because the lab in Buffalo, NY is the only one that does this test and apparently they are a little backed up. It is a confirmation test because apparently the ins. company AND the Dr are sceptical of the diagnosis because he is one out of 8 kids in the world with only this one enzyme missing. I had thought it was just the insurance company but the Dr is pretty sceptical too. We shall see. He definitely got his old symptoms back when we stopped the enzymes for surgery! Smeeeellllllyyyy!!!
Glad he did well!! That sucks you have to wait so long for the results. My DD always has a rough time with her o2 sats coming out of anesthesia too. Her normal sats are around 93 though because of her compromised lungs though so readings in the high 80s are not uncommon. Anyway, good luck with the results, will be waiting to hear
The first time I watched was scary. I cried my whole time in the waiting room and just waited for him to come out alive. After that time it has gotten easier each time. That was his secong endoscopy and he has had I think 9 surgeries with anesthesia since then...we are pretty much in a routine with these now...
Ya, I wish the test results didn't take so long but I really don't think they are going to change what we do. The symptoms came back when we stoppped the enzymes and I think a positive test is a positive test no matter how rare the disorder is...