Happy Monday friends! Whew – what a crazy few days….. my infection threw me out of commission big time turning last week into a much needed recovery week. So I have not had a chance to get back to you on the happenings with Danny.
On Thursday, January 17 Danny had an exploratory procedure to see what the heck is going on. If you want a refresher of what we are trying to figure out, my last health post provides an overview of the decrease in lung function we have been seeing and what we hoped to find. With every single test under the sun having been run, we are down to one major potential issue: reflux. Where the new lungs meet Dan’s esophagus could be dealing with a reflux issue that would result in decreased lung function and since we can’t find any infections and the lungs are appearing healthy, this seems like the answer – but we needed to know for sure.
Everything has been pointing to this issue, except Danny hasn’t really been feeling reflux. The interesting thing is that is not necessarily an indicator of a problem. The reflux can be causing havoc so deep down Danny may not even feel it. So we needed a way to measure the potential reflux and to determine what may be causing it. Solution? The Bravo procedure. A GI team went into Danny’s esophagus (while he was under), placed a little chip that attaches itself with a small needle onto the walls of the esophagus and it measures reflux. Then on the outside of Danny’s body he carried a little pager looking thing that would track what was happening on the inside while Danny monitored what he was feeling/doing on the outside. So anytime he ate, anytime he laid down, anytime he burped or had chest pain – he would enter it into this machine. While doing that, he was also tracking what he ate and any medications he takes for heartburn was managed differently. This effort would give the GI team a read of what was happening from the reflux itself and what factors Danny’s every day life are contributing to it.
The test lasted 5 days: Thursday afternoon since Dan woke up from the placement until the following Monday evening. Once completed Danny boxed up his little pager and overnighted it back to Hopkins so they could download the results. Oh and the little tracker…. apparently it tells itself to dislodge and just goes through the system. There was no reason to expect Danny would feel it or see it again…. and this did prove true. Final step was to take an analysis of the results. So we waited.
As of this morning, Dan’s Hopkins team was still awaiting an update from the GI group. There is a meeting planned for this afternoon and we have all the fingers and toes crossed and prayers going up the tests say this is the issue, we get the surgery scheduled and done, and Dan is back to getting healthy. During the test, starting on Friday afternoon Danny started to have AWFUL heartburn, lots of burping, and way more discomfort in that region than ever before. Although it made from some ugly and sleepless nights, we were really hopeful this indicates that yes reflux is the issue.
So now we wait. Thank you all so much for the kind words, prayers and support. It has been an adventure and this morning as Danny got out of the shower and had to sit to just catch his breath or going up the stairs and he needed an inhaler – it is getting a little more scary with each passing day. But this is when faith really counts, this is when we embrace the chance to appreciate even little blessings like a hot coffee or cozy couch night, and it is a chance to put each other first. This can be really hard and a mindset that demands a lot of practice – but Danny and I are constantly trying to squelch our own fears by remembering that our partner is scared too. If you can let your selfish (and let’s be real – human) way of thinking go, it is sorta amazing how things will play out. We will be in touch when we know more!
Thank you so much for reading and remember to make it a great day!