To Boston and back, and back again?

That’s where I’ve been. Little granddaughter kept running fevers, ostensibly caused by the medication she’d been being kept on to keep her alive while waiting for a transplant, but, ironically, those fevers would keep her from gettng one, so with what seemed like all hope leaking out, a link was posted on a Heart Mamas Board I had joined that I had learned about early on in this journey to a study of a relatively new type of surgery that Boston had been doing for about 10 yrs., hence, “somewhat” new that is in this field, where the normal has been around for more like 20, that seemed to fit her to a “T” and which seemingly did; it actually turned out to be the surgery that turns out her cardiologist had wanted her to go and have from almost the beginning but what with being called away to my dad and not being here for that meeting, the idea at the time on top of the diagnosis just overwhelmed son and dil to the point they just basically so rejected it out of hand that I never really even knew that much about it. Although I did when I got back ask the doctor in the unit about it, only to find out later they were all strongly opposed to it because of the high risk involved; however, when transplant was taken off the table and this study article was published they almost had no choice if they were going to give her a chance at all. So off to Boston we went; my first flight ever on the little Cessna; they tell me it’s nothing like a commercial flight but enjoyed it nonetheless. Got up there had our surgery; everything went well, then….still not sure I fully understand all the ins and outs of the coming back. They have a plan with Southwestern Airlines for flight passes but not sure if they’re only for going up, which doesn’t make a lot of sense to me because if you need their help to get there, then without it, how would you get back? but anyway didn’t seem to be brought up at the time, seemed to be more an issue of getting us out of there for, Christmas? but then we just had to be transferred back to the unit at the hospital we came from but I guess we were at least closer to home and parents so they could at least be with her even if it was still in the hospital but they didn’t understand why they sent her back like she was; they said she was too complex for them to take care of her, making us feel real good. ha. But anyway here we were and she did make enough progress they let her out to the step-down unit, where though she proceeded to deteriorate and wound up having to go back to the unit, where she wound up back on the ventilator, not for long, granted, but then has had to go back on oxygen, building up fluid again because they’re concerned the diuretics are hard on her kidneys, which they are, but they’ve put her back on them iv; it is a balancing act, one they can’t really handle; they’d really like for her to go back to Boston and if they can’t handle her here Boston would like to have her back but you know how the bean counters are; they don’t want to pay for it so not sure how it’s all going to play out. We’ll see

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About donnainthesouth

I'm a transplant, born up north but raised in the middle, now I'm down here where you don't see too many snowflakes; I'll probably post just about as often (here at least)
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