Original Text of an E-mail from Douglas to Family/Friends
Dr. B called and came by around 10am this morning. He looked her over and asked if her jaundice was getting worse, which it isn’t. He couldn’t hear any murmur associated with patent ductus arteriosus and believes it’s possible that this may not be an issue later. This was something the hospital and hospice staff believed would cause her cardiac and respiratory issues to return. When asked if he though those episodes would return anyway, he said yes. He believes that whether caused by her heart, her lungs, liver, kidneys, etc, one way or another they’ll return. He re-iterated the same point everyone else does, that the condition effects every system of the body and it’s never in a good way. He’s a very good doctor and a has said he doesn’t see any reason to bring her into the office and expose her to any other sick kids, that he’ll do anything he can to help, run any tests we need, come to the house when needed, etc. Great man.
I find it difficult to accept that she can live as she is now, she sleeps, she looks around, poops, stealth-pees, cries… everything other kids do, but her body is struggling to balance itself in ways other invisible ways just to stay here. Struggling enough that eventually it won’t be able to compensate anymore, her condition will deteriorate, and she’ll leave. She seems and feels so “ok” to the naked eye right now.
She only had one episode today, and it wasn’t a severe one, very minor. It’s a reminder of the struggle I guess. When we talked with Jessica yesterday she mentioned that some of the other couples she’d worked with didn’t experience episodes while they were in the hospital. They took their children home and only after a while began to have episodes at the very end. It upset me greatly when she had them in the hospital, but I think it’s prepared us for what is to come. Some couples didn’t get a glimpse, a warning, any preparation. I may not feel it now, but in time I think it will have helped us.
Alex has her days and nights mixed up. She spent all day today asleep in our arms, but tonight she’s a bit more active. She’s a night-time party girl, something I was always warned my daughter would probably be. 🙂
Merry Christmas everyone, God bless you and have safe travels.
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