Thank you for your patience

As we continue on this journey, one thing is for sure, we won't be taking an easy breath for a long time. Have no fear, Erin's lungs are working great, but each day has so much uncertainty right now that life in general is stressful. Here's what's been happening on our end. March 9-14, Paul and the kids came down to visit and we enjoyed some much needed family time. Highlights included a trip to the Science Center, pizza and games at Happy Joe's, birthday cake for mom, video of Erin and Kahlan dancing to Moana, and just being in the same room for more than 40 hours for the first time in 3.5 months. It was wonderful! The pneumothorax cleared up which gave the go ahead for Erin's bronchoscopy on March 14.and results came back with no signs of rejection! Lung function test on Thursday registered a 62%! Erin tested out her new lungs this weekend walking the zoo for over 90 minutes on Saturday. Today's clinic visit showed a drop in her lung function down to 50%. While this was disappointing to see, her doctor wasn't concerned and said she wouldn't be surprised if they were back in the 60's come Thursday. She also reaffirmed her lungs sound great and she looked really good. The stressful part right now is that we need to constantly be evaluating every situation, looking for any signs of distress, monitoring, checking, double checking, being cautious yet testing her limits, learning meds and simply getting a feeling for what life with new lungs looks like. Our biggest stress continues to be her diabetes. This past weekend was especially stressful as her blood sugars spiked and dropped and spiked again for no reason. One time an insulin correction would work, the next time it caused her sugars to spike 300 points. Exercise is linked to lower sugars and yet Erin's went up, fasting usually decreasing sugars unless your name is Erin! We continue to work with her doctor to find the right mix so that her body has the best chance to heal. Despite these difficulties, she is doing well. Today she walked a half mile in 30 minutes without a break, her appetite is improved which has allowed her to eliminate 2 feedings a week, and for the first time in nearly 6 months she worked on homework for more than an hour (although she wouldn't say that is a positive!). She is looking forward to a visit from friends this week who are making the 8 hour trek during their spring break. Lots to be thankful for........yet lots to still pray for.

Comments

    Leave a Comment