I could not have asked for a better day "off" from doctor's appointments. It is thundering outside, and I am hoping for lots and lots of rain to cool us off. Our little tin box we call home tends to overheat rather quickly. Tommy is on the verge of a nap that he is fighting not to take. If he is anything like mommy and daddy, as soon as the rain hits the roof, it will be off to sleepy land.
We qualified for respite, but as it turns out, it might not be what I had in mind. My idea of respite is a break from caring for Tommy. I need a competent individual with experience dealing with cardiac and trach babies to care for him. As it turns out, our early intervention program program provides respite in this manner: We first request a voucher from our caseworker who handles a total of 10 cases. Of those 10, she decides who is in most "need" of respite at the time of our request. Then we are issued a voucher, good for about $7.50 an hour for his care. Now comes the worst part. WE choose his provider. Any person we want can provide the respite. That is a HUGE problem! We don't know anyone that can do this for us! They don't have a list of trained individuals or nurses we can pick from. It's just "here, go find someone, then we will pay them".
First of all, I don't have too many friends, and the ones that I do still have are so busy with their own lives that they can't even babysit Matthew and Brandon, much less go through training to care for Tommy. Every person left alone with him must know how to take care of him in an emergency. This includes knowing how to suction his trach, cpr with a trach, and emergency trach changes. Then I must train that person how to feed Tommy with a pump and give his meds through a G tube. Oh, and how to spot signs of heart failure! I swear, I feel like making up an imaginary name for the paperwork and cashing in my vouchers! (they will be made out in my name)
Ok, I am done with my rant. I want today to be a good day. It's nice to not have to schedule my day around who is going to give him therapy that day. I am about to feed Tommy. He always goes to sleep when he is getting fed. Maybe Brandon will take a nap too. NO! Scratch that, no nap means he will go to sleep early tonight! Here's hoping!
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Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries
1 comment:
That is just stupid that they don't have a list of providers. In my area, anybody who does respite has to go through screening and training. I'm sorry it's turned out to be such a pain for you.
I hope things turn around and get a little better at your house. You may not want to read my blog - it may scare you away from having any help come in at all. We just had a pretty serious problem with a home health aide. But honestly, you really do need a break! Over the years I've had a few problems with people who have come into my home to help with Jess but overall it's been a welcome break. Next month is Jessica's 19th birthday. It gets tiring taking care of a special needs child 24/7 for that long.
Hang in there and pray for someone good to come into your lives as a respite care provider. Right now we are praying for a good home health aide for Jess.
(((hugs)))
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