Well you guessed it, another call from the school nurse today...AND he was out! I was actually surprised since he woke up really well and was excited to go to school this morning. His Teacher even said he was having a great day. Once he went in for his tube feed however he said his stomach hurt and felt like vomiting during his feed. She turned it off and it wasnt more than a few minutes later, he was fast asleep. She said she couldnt believe how fast he went into such a deep sleep, she tried waking him but nothing. I could of waited it out like she suggested but I didnt want him to have another accident in his pants so went to pick him up right away.
I decided to send another email to his Mito Drs nurse. I sent one last Wed. and havent heard anything back yet. What I really wanted to know was the EEG results from 2 weeks ago, so for now Ill have to stick with--no news is good news...its just all a real mystery to me, not even being able to make it through a day of school now.
His sugars were decent and he's still drinking orally but really hasnt had much of an appetite. He's also getting his full feeds overnight (with a slower rate because of his tummy pain) He's peeing too so I cant imagine him being dehydrated. I did take his temp tonight and it was at 100, but its back down now. Maybe he's getting sick, I dont know. I was also thinking it might not be a bad idea to get some labs on him when he has these episodes of sleepiness. Someone mention ammonia? Anyway, Im hoping for a better day tomorrow because missing this much school is becoming a real problem :(
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4 comments:
Oh gosh, I can't imagine how you must feel when the telephone rings. I'm glad the school called right away thought. No mommy wants to think of their "baby" laying around in the nurses office for hours. I hope you get some answers soon about his sleep episodes so you can get back to some kind of a routine.
I always hate it when SOMETHING is obviously going on, but there are not any obvious clues as to WHY it is happening. Sorry he is having such a rough go of it right now.
Do you think temporary half-days (whichever half is more important) at school would help? He could rest up either before or after, depending on which half he attends, and see if that helps him get a little more out of the time he is there?
I'm so sorry things are not gettng better for Jack. I wish they could figure it out for him.
I just wanted to give you this info about the resting metabolic rate. This is what the test can tell you depending on what results you get from it.
The resting metabolic rate determinations can be useful in children who are too young for exercise testing and in adults unable to
perform exercise testing. Patients with OXPHOS defects may show increased resting metabolic rates possibly reflecting an increased oxygen
consumption to compensate for reduced ATP synthesis (Roef et al 2002) or decreased resting metabolic rates reflecting decreased oxygen
utilization by tissue mitochondria.
Hope this is helpful. All of our kids have really low RMR, which means they actually shouldn't need many calories as all to grow, but they eat a ton (more than my husband and most grown men) So they said that our kids probably all have an absorption problem as well. We know Maggie did but our other kids probably do as well. Otherwise they should be obese with the amount of calories they take in.
Praying for your family always!
Poor Jack! I'm sorry that he is having such a hard time. That has got to be so stressful and sad for him and all of you. I can't imagine what you must be going through. I will definitely be keeping Jack and your family in my prayers.
I don't know your situation with the school system up there, but, similar to what Kyla mentioned, I was also wondering if your school may have an Independent Study program. Here in California students can sign up for Independent Study and are then welcome to attend whatever in-school classes they decide to or are able to, while completing the rest of their studies at home as they are able to. Again, I'm not sure if that's what you are already doing, or if it's even an option or something you are interested in doing, but I just thought I'd mention it, for what it's worth.
Praying for all the best.
-Carrie
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