Lets go home!

 

Maddy's new ventilator came yesterday so we get to go home today! I didn't want to post anything until we talked to the doc this morning just to be safe. He just came in and gave us the all clear so now we just have to wait for paperwork. In the pic above you can see Maddy's new machine on the left compared to the hospital one on the right. Much more portable and easy to deal with. Obviously! The new mask is much better than the generic hospital one as well. It fits much better, has a smaller hose and a swivel connector so she can move easily. I'm sure she won't have any trouble tolerating this at home.

So that's the plan. Use the ventilator at night so she doesn't get Co2 build up again. IVIG every month to get those suckers down. Maybe photopheresis in the future and also maybe thymoglobulin again. Dr. Floreth said they don't like to do the thymo more than once a year and it's just now been a year since she had it. So they will watch her levels and if they are not going down start using the more hard hitting treatments.

Thanks again for all the prayers and good vibes.

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