“Why am I so soft in the middle when the rest of my life is so hard?”
Tonight we said a sad good-bye to the Runabout triplet stroller. It was traded in to a family with 7 (#8 on the way) Christian home schooled farm kids whose names all started with the letter R who were already getting more use out of than we ever did. Sadly only one stroll around the block with Wyatt, Ava and the neighbor girl was all it took at our house. In trade for the stroller, I now have a deep freeze full of home prepared meals and organic chicken. I’ll have to make my next big trade in for some beef or sea food. Nice family. Wyatt and Ava enjoyed the play date on the farm and seeing all the livestock up close. I’d like to move in and join them, sing some hymns, gather some eggs, go for a swim in the pond, sounds like good times to me although not sure I’d be up to the chicken butchering task.
As for the ever complicated and troubling Miss Lydia we could use some good news at the moment or any miracles anyone has up their sleeve. Surgery #21 was done last Thursday when the upper pouch had completely torn from the sutures and a leak developed. Dr. Jennings sewed the pouch up and tacked it in place and then reinforced the lower end with more traction sutures. Dr. Foker had said if the gap could get to 20mm he would be able to connect her. Today she has a gap of approx 29mm (we’ve been hearing anywhere from 25-36 the past few days) and she’s been having increasing pressures on her ventilator showing her lungs need to take a break from being paralyzed on the vent and all the thoracotomies.
So now we try to figure out what the next plan course of action is with our options at the moment being crappy or craptacular. Back to the dreaded spit fistula? Even the name sounds awful and the fancier name of cervical esophagostomy doesn’t sound any better or another 6+ months of having the repogle and letting her lungs heal again? Keep pushing her the next few weeks and hope we can get her connected? It’s all a gamble. If her lungs end up severely damaged, she won’t be a candidate for heart surgery and it seems without the repair she’s a risk for constant aspiration or with the repair she’ll have to undergo more thoracotomies or insult to the lungs. sigh. It’s very discouraging to think she’s been at Boston for over a year and could possibly end up going back home without a connection and having to undergo still more surgeries down the road. The tracheostomy is still in the plans for the near future and will hopefully allow her to come off her ridiculously high levels of sedation and narcotics.
Clay is back in Boston again this week. Please pray for strength for our girl and all of us as we continue this iron man triathlon and try to make the best decisions for her. This summer is feeling too much like Summer 2010, one I thought I could be done with.
- Posted in: Uncategorized