Conference News

Yesterday Luke had a repeat Eco cardiogram. Unfortunately the pressures are up in his heart again and the Cardiologist started him on Nitric Oxide therapy again. This was disappointing because it means that the Sildenafil isn't working as well as we hoped and he won't be going home soon.
Today we had a conference regarding Luke's lung and heart issues with his main doctor, Cardiologist, 2 of his NMP's and 3 of his nurses. We were able to get several of our questions answered and discuss what's next for Luke. With Luke's heart pressures being up, it's not possible to close his ASD, which could help his lungs, if they can get his heart pressures down, then it's a possibility. I would like to say the meeting was all hopeful, but it wasn't. It's the bare truth of Luke's lungs and heart. We are buying him time in hopes he can grow out of his lung issues, which would lower the pressure in his lungs that is causing the extra pressure in his heart. A repeat Eco cardiogram will be done to see how the pressures look in his heart being on the Nitric Oxide. There are a few other things they can try, but the options are becoming slimer.
How are Jeremy and I doing? I had a very difficult time during the meeting holding back my emotions and Jeremy and I talked afterwards allowing us to let our emotions fully out. Although it's troublesome hearing the different sides to Luke's lung and heart concerns, we appreciate his doctors informing us of all scenarios. Jeremy and I remain hopeful and will continue to take things with Luke one day at a time. We also realized even more today what a great staff Luke has caring for him. We know these people are pretty special, but they also honestly care for Luke, Jeremy and I. There hearts are with ours and several are more than just Luke's caring staff to us, they've become part of our family. We pray for each of them daily, as they need our prayers through this too. It's not easy being in their shoes either.
How is Luke doing? He is doing pretty good. The Nitric makes his lungs wetter, so he's on a stronger diuretic, which seems to help him. He continues to eat well and is just his normal happy self. Jeremy and I enjoyed playing with him together after the meeting, something we don't do very often together. For me, I have to say watching Jeremy with Luke is extremely special. He's such a good dad.
How's Bryan? Bryan actually seems kind of sick the last 2 days, I was thinking it's him cutting his molars, but this evening, I am not certain if it's not something else. He was fine having me leave this morning, but this evening, when I needed to leave for a bit, he had a melt down and didn't want me to leave. That's always a sign that he doesn't feel good. He did have fun helping us put a few Christmas decorations around the house, something that helped lift our moods.
We appreciate each of you taking this journey with us and for those continual prayers that are holding us together and guiding Luke.
Melinda