It is now Saturday - and there are no new changes. I just talked to a resident doctor and I am on the impression we will be released today - since we know how to better care for our child than the nurses here - and we would be more comfortable doing it in our own home rather than 2 1/2 hours away.
We still do everything while here, we change diapers, we feed him, we bath him (I have to ask for the supplies), we even give him meds - the only thing they do is monitor his heart, and breathing by looking at a monitor. Last night the IV alarm went off twice - and so I hit the nurse's button - and they never came - so I had to walk down to the nurses station to inform them. On top of it we have to eat their food in their cafe' and each meal keeps adding up. I would rather do this at home being surrounded by family and friends.
I am frustrated because he takes topamax for seizures and it is documented in his chart that he needs the name brand version - and three times they have given me the generic version (luckily I have brought my own drugs and caught it before we gave them to him) - if you scroll down on this blog - you will find out what happens if he takes the generic drug - he breaks out in hives and has an instant seizure (that lasts for awhile which causes us to give him another meds in his butt) - and I would prefer not to add any more complications to his medical history today. (but three times - really - I even pointed to the nurse that it reads "name brand drug only" yet inside the drug package were generic drugs)
Plus he takes two breathing inhalers when he has a cough and breathing issues - and at Sacred Heart they provided two applications and they have not done one application here - which surprises me - since you can tell breathing has been an issue -
They have said that he looks really good for having this type of flu - often kids need to have oxygen added - and he is able to breath on his own. This is a very positive. There are about 8 other kids currently here with the same type of flu.
Thank you for all of the prayers - he is still very very sleepy -and we are anxious for him to back to himself.
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