In order to feed Brextin I need to use a tube that attaches to his feeding tube - our insurance company - Group Health - will not cover the tubes - the reason - because the tubes are not durable medical equipment - since they can only last for about one month and then will need to be tossed - due to risk of bacteria forming into the feeding tube - I just shake my head -
Since insurance won't cover them - I have to seek them from some place else - luckily the state of WI will buy two a month for Brextin - one tube goes to daycare while the other one stays home.
The tubes are constructed out of plastic and have been known to break on us - so we needed a back up - so I went to ebay - and I am forever grateful to the seller who sold us her extra tubes. I looked into buying them from a medical suppler on-line and I could get 5 tubes for $75 - but thanks to ebay - I got a ton more at a cheaper price. It is sad to know that I have to turn to ebay or craigslist to buy medical supplies for our son - it is just really sad!!
We are scheduled for another EEG - Mayo never called they just sent us his agenda - he are scheduled for doctor appointments on the 16th, 17th and the 19th. We are not interested in missing three days of work so we are hoping that we can move the two doctor appointments that are scheduled on the 16th to be bumped to the 19th - currently I am not having any luck - I think Mayo thinks that all of their patients live near them - however we are 2 1/2 hours away.
He is scheduled to see the ear doctor to check on his ear tubes on the 16th and also a follow up appointment for his g-tube (we still have granulation - but it is getting better) and his 24 hour EEG is on the 17th. We are hoping these doctors can see him while he is getting his EEG - or after we see his neuro doctor with the results of his EEG.
I was very anxious for his EEG a couple of weeks ago since his seizures were non-stop but luckily he hasn't had any since he has been back to name brand seizure drug. Andy will go up on Friday while I will go on Monday - we usually take turns as to who attends his appointments - since we need to remain working to help pay the bills.
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