Sunday, December 30, 2007

Sorry! I meant to post earlier!

We qualified for both programs! The medically fragile program has several other homeschooling families, so I am going to try to get together with a couple and see if we can work our something that would benefit all of us so no one would miss time with any of our kids.

I'm very excited about CLTC. They are shooting for 40 hours a week for a Personal Care Assistant to come to my home and tend to Tommy's needs. Whether it be a diaper change, a bath, or doing his laundry. She will be at least an LPN, so she can suction and feed him too! Yipee! We have a little bit of a wait on that because the coordinator said it takes about 10 days to hear back from Tommy's doctors. The doctors have to write orders for nursing. I told her which ones she would see the best results from the quickest and gave her their information. We are hoping for 3 days 2 nights. Woo-hoo!

I will have to post another update later. I am so tired. Tommy is getting blue again and he is getting harder to manage. He's waking up in the middle of the night coughing, blue, clammy and sweaty. I sent an email to his cardiologists. I'm going to try to take a nap because I had to get up with him very early this morning. He was desatting and I had to give him a breathing treatment.

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Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries