Another Hospital stay

We have another stay in the hospital coming up next week. They are talking about putting a feeding tube in his stomach for an extended period. We have the tube in his nose now and it is working really well except that no one gets any sleep. He has gained almost a pound this last week which is unbelievable for him which had taken him three months before. So they want to surgically implant a tube now that we have found out it will work for him. This requires a four day stay in the hospital and that will be difficult especially since we haven't gotten much sleep these last few weeks.
It is a really good thing that is happening for him finally now that the hospital admits what kind of DI he has. We are finally seeing some progress in his treatment. He is on 5 meds and may go on one more but that one more would cancel out one and they are talking of taking 2 away after the tube has been working for awhile so we could be down to three in a matter of a month. There are minimal side effects as well so that is also good news. All in all its has been a great week for little Johnny and we are very happy to be moving forward. Hopefully in the next few weeks we can see some real improvement!
I think that we will see some major steps forward. Today we gave him a little portion of some baby food and he wanted and loved it.He didn't throw it up and that is a very important step. If he is going to make any strides to better health that is what has to happen for him. He has to get on solid foods before he can take the meds like he needs to. Right now being so small I think he can't really take the dose that he needs to take. The meds help some but I think they could do better for him if he was a lot bigger. I could be wrong, this may be the best they can do but for now it has to be enough. I am very happy with the progress and when he gets enough sleep he is a happy little guy.
We are having a little trouble adjusting to everything and worry about the future for him but that is a parents job really anyway isn't it? I mean we all worry about the future for our children and want the best for them. We just have a little something else to worry about. If it wasn't this we would find something else.
Well, I know I haven't posted much but I am doing the best I can. Like I said we do not get much sleep. Like now it's 3 in the morning and I am waiting for the food to stop pumping so I can clean it, change him, then go back to bed. This is the only time I have. So maybe it's a good thing to be up. I just hope I can inform someone else who's child has this and are looking for answers. It was hard for us to find some and get the doctors on board. So contact me if you want you want to talk or ask some of our experience with this thing. We are not doctors but just having gone through the same thing as someone else and being able to ask them questions about their experience was probably the most helpful thing for us and our son. This is a pretty rare thing so there is not that much info out there for us and for that matter not even the doctors have much to go on.
So have a great weekend and be Good !!!!