Sunday, April 19, 2009

Moving Forward

So the above photos are of Isaac in his new VW Bug swing and of him with his gorgeous Great Nana. If you look closely she has a tear in her eye as she is Sicilian and gets emotional easily, especially when she gets to hold her great grandson who she prays for everyday in her walk in closet. No kidding...if you can't find Nana anywhere, that's where she is!

So June the first we see the ENT Doctor to talk about the next scope for Isaac to see if he might be ready to get decannulated (have the trach removed). Two months ago I didn't believe my ears when she said it was even a remote possibility. when she originally placed the trach we asked "how long?" She said anywhere from a year to the rest of his life. I figured we would be looking at a very very long time. So I'm still very guarded as I know how these things can go and it just may not be the right time yet.

Having the trach removed would make life much easier for us as we could be more mobile with him and and he would be less fragile. He would also be at less risk for respiratory infection. On the other hand having it removed could potentially be risky and we could lose most, if not all of our help that we have had since Isaac was 4 months old. Isaac qualified for a program that would allow us home nursing due to his medical condition, but he mostly qualified due to the risk factor of having a trach.

I didn't realize this until talking to a few parent's with fragile kids who do not get this kind of help in the home. Most of them are expected to learn to become medical professionals overnight without very much help. I have been writing to congress about this issue. If it were not for the caregivers and the support we had during Isaac's first year of life I would not have been able to keep my head above water.

A lady at the hospital who was planning Isaac's discharge even told me one time that there were no nurses in the entire city because of a nursing shortage. She then in the same breath recommended counseling. Right after that I called up the first agency I found and...... sure enough they were scheduling nurses for us within a week! What if I had taken her word for it? Why was I told that? Why did I have to find the resources myself? How many other people are not given the proper resources when going home with these precious children?

That's when I officially became a mother of a special needs child....when I learned that you
never ever take no for an answer!

So I'm praying for God's plan as I know his is perfect. If he has the trach removed it will be a celebration, but It will also be an adjustment for all of us.


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