It’s been a few weeks since we got home from our last cabin trip. It was a great get away after a stressful week. Why was our week a bit stressful you ask? Well, it was just super busy. Mom and Dad finally sold their house. But since they can’t live at the cabin, they needed a place to stay until their other house is built. So, they moved in. We were busy getting everyone settled. Plus, Hank had two doctors appointments that week.
Some of our adventures in Montana…
Hank was at the cabin too, in case you were wondering.
At Hank’s last cardiology appointment they made a big leap with his pacemaker. They turned him from 100 to 80 for his resting heart rate. I was a bit surprised about the jump but assumed it was what he needed. Plus, conserving battery life in his pacemaker is a priority for him since he’s 100% paced (meaning he has no heart rate that kicks in, it’s just too low). Since his appointment we had noticed that he was having a hard time keeping his oxygen saturations up. His normal was on 3/4 to 1 liter of flow he would have numbers in the 94-98% range. When we go to the cabin, we can usually keep those numbers up around 2-2.5 liters. We went to the cabin after his appointment, then we came home, but we were unable to keep his numbers up with his normal flow. Weird. I thought maybe he just had to get adjusted to the new rate. I checked with cardiology just in case… they said his change shouldn’t effect his lung function. So, we went on another week. At 2.5 liters, he could barely keep his levels above 90. So I put in a call to pulmonology. In the meantime this happened.
Can you see it? Drew got an awesome spider bite on his leg that turned into a lovely cellulitis. Thank heaven for the great guys at work who helped me out because I was supposed to be at the hospital for work, not for my 3 year old. After a week plus of antibiotics, he is much better.
Anyway, later in the day, I heard back from pulmonology. I was advised to take Hank in for a chest x-ray with the pediatrician, because really, it was agreed by our pulmunologist that Hank’s heart rate change shouldn’t effect his lung function that much. Long story shorter, x-ray was clear, whew. Cardiology called. Arrangements were made for St. Jude Rep (pacer rep) to come to Logan and turn Hank’s rate up to 90 bpm. The next morning, Hank’s rate was changed and there was immediate results. We could turn his oxygen flow down to his normal and get great numbers. What a relief. That kid wants to do everything his way.
Found this on facebook
Oh, one more thing. Check out this amazing quilt block that was made and dedicated to Hank. It was made by the awesome people who work with the Congenital Heart Defect (CHD) Awareness Quilt Project. Read about their amazing organization here. Hank’s block will be on a quilt with other adults and children with CHD and displayed around the country to spread awareness about CHD.
(CCHB – Congenital Complete Heart Block)
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