We're home and Joshua is fine. We're all exhausted but hopeful. Joshua was able to take off his bandage last night which made him happy. He was tired of that compression bandage on his groin.
We're in a waiting stage right now for the medicines to be approved and started. It's a long paper trail since these are not drugs you can just go get at Wal-greens. It takes a lot of paperwork from the hospital showing necessity, which they have plenty of. Then we'll get them directly from the manufacturer or center that sends them out.
We visit our pulmonologist here in Jax next week and then the cardiologist here (the fantastic doctor here that found the PDA when everyone else missed it) in 2 weeks. Hopefully we'll start the meds in two weeks. We will travel back to Gainesville in a month.
More to come on Joshua but that's it for now. The brains are a little fried with info overload and I want to get information out to you but please understand we're trying to figure it all out as well and I want to be able to explain it so you can understand it too.
Please keep Joshua in your prayers. Thank you so much.
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An interesting mix of chaos and quiet all wrapped up in one happy family!! Mostly chaos.
Our Verse
Isaiah 55:8 "For my thoughts are not your thoughts, neither are my ways your ways, saith the Lord."
About Me
- John and Michelle
- We are a loud, loving, happy family with four kids, a silly little dog (who was supposed to be a german shepherd), and a neurotic black cat. Ahhh... blessings abound!! We are also learning to live with our son's terminal diagnosis of Eisenmenger's Disease, which is a combination of a heart defect (PDA) and PAH (Severe Pulmonary Arterial Hypertension.)
where are you?
1 comment:
I am glad to hear tha Joshua has an excellent team of doctors around him. I am also glad that he has such loving parents, friends and family to surround and support him as well. There are also some of us cheering from afar, praying for Joshua's health, and happiness. From all accounts, he is a wonderful human being and a fine young man. I have wished over the years to know both he and his brother more than I do, and get updates from their Grandfather quite often.
I've much to say, and many thoughts about your sons, but a comment on a blog is neither the time nor the place for either.
Know that Joshua is in my prayers, as is his brother. I also pray for his parents, and their strength and tenacity through these times. God bless your family.
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