Another Boston roller coaster weekend
Sigh. Where to start on Lydia’s roller coaster? She’s been doing great since moving to the PICU on 10/26 and last week they even were starting to talk about transferring her to the floor. I in the mean time was preparing my protest speech of while she’s not critically ill at the moment, she needs to still be in the PICU. She’s too much of a trouble maker to be left alone on the floor and I want her to have the extra attention. Anyway, needless to say, Lydia decided on her own she didn’t want to move out last weekend. I flew in on Thursday and she was smiley and happy and had been on and off oxygen only requiring a whiff of 1/4L at times. Friday she started breathing a bit faster but does that at times especially when she’s been more positive in her fluid balance for a few days so I wasn’t terribly concerned. They also came in Friday and said Dr. Foker would be flying in late Sunday night and she would be having all day surgery Monday AM. I was terrified and elated all at once. This is what we have been waiting for since July – good health and Dr. Foker’s schedule and licensure to all work out so we had the most experienced EA surgeon taking another shot at growing her esophagus. I got my flight changed. All was finally going according to some kind of plan and there was a brief glimpse of light at the end of the tunnel.
Saturday started off with grand plans for a spa bath and treatment, goofy Christmas outfits and possibly even a stroll around the hospital. Instead her GJ tube fell out in the tub and the only trip we got was a surprise visit to radiology for a new one. That afternoon she just never perked up after her nap and we had to keep going up on her O2. By Sunday she was running a fever all day, very lethargic and up to the max on her high flow nasal cannula with 7L flow and 100% O2. They had cultured everything and sent viral cultures as well which were all negative. I guess she just wanted to snuggle on my chest all weekend instead. Needless to say, Monday’s surgery was canceled as it seemed she was brewing another unknown infection. Her white cell count had gone up from 7 to 21 and they started her back on IV antibiotics. I unfortunately had to fly back on Tuesday, anxious to see Wyatt and Ava and reprogram them that there weren’t any grandmas to keep spoiling them. It was a slight relief to have gotten to just hold Lydia all day Monday rather than just wait in the surgery waiting room all day.
The rest of the week she seems to have turned the corner and is doing much better. She got another PICC line in so they won’t have to keep hunting for veins and they’ve been able to turn her oxygen and flow back down. We’re not sure of any future plans, she may get a GI scope of the lower end of her esophagus next week and then we’ll just have to wait for Dr. Foker’s next trip to Boston to coincide with her good behavior.
Thanks for the continued prayers for our Lydia. We never dreamed we would be seeing another Christmas without her at home. Last year I only had Wyatt at home so at least this year we get to celebrate with Wyatt and Ava. Next year, Lydia will be eating Santa’s cookies with the rest of them.
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