It’s been awhile since you’ve heard from me and while it’s partly because Erin likes to play this see-saw game of feeling good then feeling bad, I’m blaming the lack of updates on the hole in my head! Literally, a CT scan in early October showed a hole in one of the balance canals of my ear that has been causing lots of trouble ever since our return trip from St. Louis in March. I will be having a craniotomy on November 12 to patch the hole and place tissue along the ear canal where more bone has disintegrated, which has basically left me bedridden for over a month. After the 3 day hospital stay and 3 week recovery at home there should be no more excuses! So here’s what’s been happening....
Erin’s year evaluation in February was moved last minute to March due to insurance issues (always a blast!). Erin was feeling a little under the weather so her lung function was only 83% (her highest in St. Louis though) compared to the 90’s she had been blowing on her home device. Her bronch showed no signs of rejection and her doctor and team were thrilled with her progress. And yet, they were hesitant to stop her treatments. We did however get some very exciting news that Erin could proceed with having her gtube button permanently removed as she no longer used it for feedings and her constipation issues appeared to be cleared up. Once we got home and popped that bad boy out all of Erin’s GI issues increased tenfold, including the need for a small surgery to securely close the gtube site. Erin spent her summer doing 2-3 “cleanouts” a week (the equivalent of preparing for a colonoscopy) because she kept getting bound up. If her gtube button would have still been in place, we could have simply poured it down her button and there would have been no inconvenience. She is now seeing a GI specialist at Children’s in Milwaukee and has been able to reduce the cleanouts to once a week by following a new FODMAP diet (think no anything basically - no onion, no garlic, no additives, no gluten, no dairy) and some new medication, all of which seem to be helping.
In August, we took a family trip to St. Louis for her 18 month check up. We went to the zoo, the science center, toured a chocolate factory, and just got to be a family. We left that week with the biggest news since transplant - this would be Erin’s last bronch unless she shows signs of deterioration, her lung function improved again to 87% (she was still hitting 90’s and into the 100’s at home sometimes), and the BEST news of all TREATMENTS WERE DONE! Well, that lasted 3 days until we got home and she began coughing up blood clots from her bronch and her lung function dropped into the 70’s. So, treatments started back up. We all felt deflated. Thankfully, this was short lived and 3 days later her treatments were packed up once again for good this time. The school year quickly began and Erin is taking a sign language class at the high school, along with her online classes and she is slowly adding more and more to her schedule. She still struggles a lot with GI issues and migraines, but we are taking it day by day. She is able to drive herself to school and be more independent thanks to her driver’s license and new car she got in August. Hard to believe she turned 17 in October! Life is crazy beautiful and we have so much to be thankful for; yesterday marked 21 months since Erin began her second chance at life.