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Tuesday, July 5, 2011

A mito summer

Hey Yall!

I had no idea that with home health came so much help! Jackson's nursing supervisor has called and gotten Jackson's diaper situation @ Target worked out. She told them all about my troubles and she is helping me switch diaper companies for next month. She is also helping me figure out how to get the Solace nutrition Cyto-Q (Co-Q-10) covered by insurance. She has been making all the phone calls and I just follow up with one phone to her. It's great!

Jackson is finally better. His lungs were clear today for the first time since May. I was so excited! He went to the dentist today and got a good report too. I have been trying to do more during the day with E and W. Charlotte's hours are from 10am-6pm. Since Jackson has been feeling better I have felt better about "leaving" him with Charlotte. I am never very far away and not gone for long amounts of time. I have been taking the kids swimming at friends houses and trying to spend some time with them. Just going to the grocery store with just them has been a treat. We have only been getting Jackson out when he has an apt. It has been way too hot for him to be out in this heat for one second. He has been struggling with his body temps. It seems to always rise when he gets dressed. He has been spending most of the summer just in his diaper. I am working with Elaine (home health nurse supervisor) to get Jackson a cooling vest. I don't want the evaporation kind. I don't think Jackson would like to sit in the wet. I want one I saw that works with Gel packs. I bought an ACE bandage reusable cold pack. We put that between his back and the wheelchair/carseat. Sometimes, we put it on his back while he is lying on his side in the bed to cool him off. This seems to help cool him off. His temps have been 99.5-100.2. These might be a new normal for him, I am not sure. They just can't be normal because before all this sat dropping and bronchitis his temps were always 98 degree range. Today he had a normal temp 98.6 for a little while. I have emailed Dr. K and they all think the body temps are the dysautonomia. His brain just can't regulate his body temps. The heat hasn't been helpful either. We keep the air in the house low. Everyone says my house is a refrigerator. I have the bill to prove it too! It's all worth it though, I gotta do what I gotta do to keep Mr. comfortable. He hasn't dropped his sats like he did before the last hospital visit since the increase in meds. The zonegran made him sleepy at first but he seems to have gotten used to it. If he is experiencing any other side effects I don't know. I'd give anything for him to tell me.  The temps may be another indication of disease progression. I don't know...
Make-A-Wish came and interviewed us last Thursday. They asked lots of questions about things Jackson liked. It was hard to answer because he really doesn't indicate a favorite color, toy, etc. I told them that ever since Jackson was dx we try to do 2 things. 1) make happy family memories 2) do anything to raise awareness and funds for mito. I even suggested a commercial with a celebrity! Our #1 wish is to go to Disney World. The kids and I have never been. John went when he was little. I don't know when the wish will be granted or when we will go to Disney. I do know that we will go early spring or late fall so the weather will be cool enough for Jack to roll.