John's reflections and the next few days...
Thank you so much for your kind words and wishes for Iain. Seema and I have been frankly humbled by our friends who have been praying and sending positive energy Iain's way. Thank you!
Over the years we've experienced some scary days dealing with Iain's pulmonary hypertension. For me, today topped them all. After 14 hours of surgery and at 2 AM, one of Iain's surgeon entered our waiting room. I saw it in his face; the stress and concern were clear. He told us that despite all of their intervention, the bleeding had not stopped. He wanted to go back in and re-examine all of the connections. He further explained that he was having difficulty examining the blood vessel connections and chest cavity wall on the backside of the lungs near the heart, and may need to resort to removing the left lung to get access. He started talking about needing to make lateral incisions to open up access, when I gently interrupted and simply stated to him to "Please do what it takes and just stopped the bleeding."
Three hours later, he came back to say that he was done. No "smoking guns" were found, but he did have the time to examine all connections closely make a few small changes. Iain was on his way to the caridac ICU, albeit on an ecmo machine and with an open chest.
Seema and I gave the teams some space and time to get Iain transitioned and settled. When we approached his room, we saw a dozen or more people in and around his room. The ecmo nurses, so dedicated and skilled, were spectacular to watch as they adjusted and inspected and spoke in a cryptic language. The doctors analyzed the data, scenario planned and called out changes to infusion pump settings. It was a beautiful orchestra where everyone was in harmony and knew exactly what they were doing. I felt re-assured.
The day has been primarily focused upon reducing his bleeding and achieving a level of stability. As Seema stated, his bleeding has significantly reduced. The majority of fluids now appear to be lymphatic, a common outcome of lung transplants. We had some episodes this afternoon where we saw significant fluctuations in blood pressure. Hopefully that is under control now.
Our goal is to get Iain to a point where he can be weaned off of the ecmo system and rely upon his new lungs for oxygenation. Our biggest short term concerns are bleeding, followed by stroke due to blood clotting and kidney function. So far, we've seen no evidence of clotting in the ecmo, but it's just a matter of time. The anti-coagulation agents needed for the ecmo machine work against our needs to minimize bleeding. It's a delicate balance.
If we weren't asking irritating questions to all of the doctors and nurses, we were talking to Iain. If he can hear us, I'm sure he was irritated as well. I suppose one benefit of the paralytic medication medication is that he can't tell me to be quiet! (just kidding)
Tomorrow is another day of challenges. Hopefully we can start the anticoagulants and yet still control bleeding.
This evening, I took a picture of Seema with Iain in the room. It was finally a moment of peace...