Friday we got to have our first all out conference with everyone minus the dining staff at Mercy. One plus was we were both there and not via Skype. The good news is Lydia does not have a TE fistula. This was confirmed by the surgery team both at Mercy and Dr. Jennings and Foker. So it’s a relief no surgery is needed. The bad news is we don’t have a fistula or some big bad brewing infection to point our finger at and say clearly “That’s it. There’s the problem” The thought is that her heart is simply failing and there’s nothing to be done but to keep providing breathing support and slowly wean all her medications with the goal being some quality time at home. No one seems to know why she had such a bad episode last weekend but for the moment she seems to have recovered from it and is pretty stable. She’s not needing any more blood pressure IV meds and they have been able to turn her oxygen requirements down a bit. They’re still just a bit high to come home on as we’d be burning through O2 tanks pretty quickly. It was a tough crowd to say the least. They sucked all hope out of the room faster than a bunch of tea partiers at a Democratic convention. At least there have been no more guilt trips about our decisions to have surgery in Boston.
We are trying to enjoy as much family time as possible this fall. Wyatt and Ava are preparing us for the terrific twos ahead with vast swings of cuteness, charm and increasing knowledge of the world and irrational meltdowns over who has a blue cup, the toy of the moment or their changing daily dietary requests. I think they’d be quite content with a bowl of gold fish crackers left out and some juice filled sippy cups. I’ve never met such harsh culinary critiques. A particular highlight of the week was the trip to the grocery store to come back down stairs to unload the van (yes, I am now the mom with the van filled with 3 gallons of milk) to find Wyatt emptying the egg carton while holding a couple and standing on a couple. Fortunately only 3 egg casualties resulted. Good times.
Here’s some pics of Saturday. Lydia seemed to enjoy her siblings and gave them some smiles and rubbed on Ava’s arm. They call her baby LaLa and are very tender with her. They save their vampire bites, pinching and clawing for each other.
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