At 11:00 Oliver had the nurses come in to give him oxygen. (When his pulse-ox goes below 85, alarms start going off and he needs oxygen.) When the nurse tried to put the oxygen in his nose, he freaked out. I am sure it doesn't feel good; it was definitely a rude awakening. In the midst of that struggle his oxygen level increased enough that we were able to leave it off for now. I truly have no idea how we can keep it on him? He almost ripped out his IV tonight even with a huge pedi-wrap on his arm. All that to say this- the doctor said earlier today that if Oliver "doesn't need oxygen in the night, you can probably go home tomorrow." I am hoping this 11 pm incident won't keep us here another night? We still have a long night ahead of us and who knows what will happen...
When they put in the IV they drew blood as well. Unfortunately, they had to draw blood twice because the first draw came up with some really low potassium and really, really low sodium numbers. I am hoping the new lab work will come back normal! Sadly, during blood draw #2 Oliver had a seizure. This one wasn't so teensy-weensy. He is so tired, so out of rhythm that this is to be expected. I just hated watching him have one right after he was stuck with the needle, agian- it just hurts my mommy heart to see that.
So, yes, this current situation does stink! However, when I see the kid in the room next door, hair totally gone from his head, clearly very sick, how could I feel sorry for myself/us? Being in hospitals, rather frequently, gives me true perspective. My mind also thinks of a baby, from Wilmington, who is currently at NYU having brain surgery. I've had the pleasure of exchanging a few emails with her very brave mother. Baby Netta has uncontrolled Infantile Spasms and she has completed surgery #1 of 3, successfully. Please keep Netta and her parents in your prayers. The team at NYU does a great deal of TSC related neurosurgery. I hope Oliver never, ever has to have neurosurgery but, if he did we would certainly consider the program at NYU.
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