Noah's tracheostomy and g-tube surgery are tentatively scheduled for this Thursday. While I was walking in the stairwell this morning I ran into the NP from neurology who admitted Noah on 8/2. She was with one of the neurologists that has looked at Noah's case. I stopped them and said hello and they asked about Noah. I told them about his upcoming surgery and they said that they could actually take a muscle and skin biopsy at that time because they can use stomach muscle for their tests. SO, that'll be good to coordinate that at the same time. ALSO, neurology has been wanting to do a hearing test on Noah for a while now but they need to perform it while he is asleep. They've wanted to sedate him but we don't want unnecessary sedation, SO, they are trying to coordinate the hearing test while he is under anesthesia on Thursday. Maybe this is why the surgery didn't work out last week...so all these other things could be coordinated.
Today Noah's nurse printed out his labs so we could give that information to the natural docs we are working with. IT WAS 150 PAGES LONG!!!! They are lining up their tests so they know exactly how much blood/urine/stool they need so they don't have to provoke him more and more. It is probable he'll need another transfusion, but the PICU docs took so much blood for their tests and to no avail. Jason and I feel like we haven't exhausted our resources and connections, therefore we'll have further testing done.
Thanks for your continued prayers and support. We'll keep you posted.