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…
Such a beautiful moment of peace. Hugs and prayers.
Keep fighting Iain. You have the most amazing parents and amazing medical team all fighting to get you through this. You are a brave, brave young man. My family and of course the dogs Annie and Harry are looking forward to seeing you back in Boulder very soon.
I remember during the later years of our elementary school life you ended up getting a staph infection and was unable to leave the house for the most part. I remember biking every other day to your house to play video games and have nerf wars. It was probably the best summer ive ever had. And playing video games with you is probably the best parts of my week even though you are way better than me and i cant play without dying
Good job today, Iain. Keep fighting, bit by bit. Our hearts are with you.
Iain you are an amazing kiddo! Your strength and resilencey to challenges have always inspired me. Keep fighting and show those doctors the determination I know you have inside you!! I believe in you just like I believed in you when you walked into my Kindergarten classroom all those many years ago. You have always had a special place in my heart, stay strong buddy you got this!! Seema and John you are amazing parents stay strong and know your boy is in my prayers and thoughts. Big hugs and lots of Love to you all!!
Beth aka (Mrs. Butterfield)
Iain man I just want to say that I’ve always admired you for your personality and attitude. I appreciate being your friend so much and as long as I’ve known you have always been a great guy. I’m thinking of you and wishing you love and strength to get through this!
David
John,
I wish Iain, you and your family all the luck and strength that you need in these moments. I have read all the posts since yesterday, and prayed for Iain everytime. I will visit a temple this evening to pray for him. Iain is brave, beyond words or imagination, just like his father.
I am awed by the expertise and care the whole team of doctors is giving Iain, he is truly in safe hands. We all shall remain in gratitude for this excellent team of doctors.
Lots of best wishes,
Sanchit
My Dear Sis and Brother in law, we very much look up to you and admire you with your focus and graciousness when times are frankly beyond imagination.
My nephew, your job is currently to keep doing what you have been doing for years and telling PH that it’s not the boss of you. You have plans in Colorado as well. My Geordie has been letting me know she misses you (for real) and I will tell you about it when I see you. Uncle Kurt needs his fishing buddy. I need someone to entertain Axel because he bugs me relentlessly….yes, I need a dog sitter so I can have a break from the barnacle Uncle Kurt calls a dog. I also had this idea that I need travel buddies to go to parts of the world that you would love to see. And there are cars you haven’t driven, cars maybe that you need to design.
Just sayin..
We continue to think about you, Iain, and your whole family and the wonderful team of people caring for you. We hope this is a good, stable day. David and the guys miss you a lot…all shenanigans are on hold until you’re back in Boulder. Much love!