Expecting the Unexpected

As we packed up our bags for St. Louis on Sunday, June 11 expecting to return 3 days later on Wednesday, Paul said "See you on Friday!" I chuckled to myself thinking what could possibly go wrong with a routine procedure. But as Paul stated, there could be any number of issues that arise while we are down there, blood work showing something goofy, a reaction to the anesthesia, her lung function test plummeting, all of which could legitimately extend our stay. However, not in my wildest dreams did I think equipment failure would cause us to indeed not make it home until Friday. We arrived at the hospital at 7:30am Monday for her ph probe procedure, a repeat from two months post-transplant designed to evaluate the amount of acid reflux, although this time she was to remain on her acid reflux meds. Her initial procedure showed substantial amounts of acid which could cause the new lungs to turn into rock (medical term: bronchiolitis obliterans, parent term: serious --it, aka. untreatable complication that would require a 2nd lung transplant!). Erin was waiting to get her port accessed when the GI nurse informed us the equip broke, there was no replacement, the manufacturer no longer made this model, the hospital didn't plan to buy any anytime soon, and you are free to go home. Say what!?! We opted for a different procedure which lasted 48 hrs instead of 24 and didn't require a hospital stay. However, they didn't stock this equipment either as it is rather expensive. The device was shipped overnight and we went back to the hospital Wednesday for the procedure. After monitoring, documenting and pushing buttons every time Erin ate, drank and laid down, we returned the equipment Friday at 12:30 and headed home. We won't get the results for another 2-3 weeks and in the meantime have increased her acid reflux meds as a precaution. Erin's had somewhat of a rougher month, nothing super serious, but definitely not smooth sailing like her first few weeks home. Her blood sugars remain unstable and unpredictable, she has had a lot of migraines and stomach pain, and her home lung function tests show signs of decline. As a result her lung function was also evaluated while we were in St. Louis, and while the numbers weren't consistent she was able to hit 69% twice, the rest were in the upper 40's and low 50's. Technique always plays a role in the numbers, but it turns out that Erin was also suffering from rhino virus (scary name for the common cold) and the congestion can easily affect her numbers. We will head back down to St. Louis in 6 weeks for her 6 month follow up!


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