Life Blog

Disappointment and Relief

Dry run. That’s what they call our whirlwind weekend. We got the call, drove there, Scott went into surgery, then came out with his original lungs. It was not the outcome we were hoping for. It was emotionally and physically draining. I was not prepared at all for it, but I was making it work. I was going with the flow. My mind was ready for the change in our lives. This transplant would be life altering for us. We would finally get to travel out of the country or go on a hike and visit nature again! I wouldn’t be a caretaker for Scott anymore, I wouldn’t have to do all the heavy lifting, all the house chores, all the bedtime baths. My load would decrease and I would get some time for just me. We were all looking forward to new lungs.

When we received the call around 2pm I was at a meeting with a young woman I am mentoring. So I jetted home and threw things into bags. We have to get to the hospital within three hours after receiving the call, so time was of the essence. I knew I wouldn’t be able to come home potentially for a few weeks so I wanted to make sure all of us had at least a few pairs of underwear! It was disastrous. I grabbed the little guys bag of fun things for the road, fed our bazillion animals (another thing to worry about!), grabbed a few snacks, and we left. I felt unorganized and as if I was forgetting something throughout the entire drive. Once we arrived we were put in a room and waited several hours before they told us what time the surgery would start — they said 6am. At this point my mom was already heading over and my sister planned to arrive early in the morning to wish Scott luck. Scott’s parents arrived shortly after we did and his sister stopped by for a bit and then came back in the morning to send him off. We spent the next serval hours chatting, waiting, and then tried to sleep. At 6am, they told us the surgery had been moved to 9am. So after shedding tears and psyching ourselves up, we had to wait three more hours.

Finally, at 9am we said our goodbyes and they wheeled him away. Wow was this hard. I felt a lot of emotions at this point, but we had Seeley with us so I kept the freak out to a minimum. Tears were shed all around. They finally called at 12:30 and told us that they had finally seen the donor lungs and confirmed that they looked great and were ready to proceed with the surgery. We all took a deep breath, said prayers, and began to wait. One hour later the surgeon called me (my heart dropped!) and told me after further examination the lungs were not good at all. When surgeons go for procurement of organs they first examine them physically, then they run tests. Each organ has to be examined before they are removed. Our surgeons went first and examined the lungs and they looked great. After everyone was finished with the examination and agreed on what they wanted, they began removing them. When it was the lungs turn to be removed they decided to do one last blood gas, which tests the oxygen levels in the lungs, before they took them out and the numbers were horrible (they were perfect when they first checked). The donor at that point started to fade quickly before they could figure out what was happening and in a split second they had to decide how to proceed. They decided to cancel the procurement of the lungs and Scott’s transplant. In talking with the surgeon afterwards he believes that by manipulating the other organs a blood clot was sent up to the lungs which caused them to fail so abruptly. We were all disappointed and relived by this news. Disappointed because we desperately wanted that “new” life. Relived that the doctors at Stanford are so diligent in their work ups that they found out they were not good before they potentially placed them in Scott’s body (God definitely had a hand in this!).

Behind the scenes, Scott had been put under, intubated, all the different IV lines were put in, catheter in, his body was literally prepped and waiting for the final call to cut him open. Craziness. Scott was under the impression he was getting new lungs. He woke up thinking “wow, I must have done really good since I don’t have the tube in my throat” then he coughed and realized he still had his crappy lungs. You could see the sadness on his face. The first thing he said to me was that he was sorry he wasted all of our time. That’s the kind of person he is, always worried about how his health impacts the rest of us. We finally drove home at 4:30 pm on Sunday, 24 hours after we had initially arrived. It was a long day. An exhausting day. A day that I will remember forever.

So what did I learn through this process….

  • This is God’s plan, not mine, so it will happen in His time. I need to stop stressing about it.

  • Pack a “go” bag for everyone! This will help me feel more prepared.

  • Have a list for aaaallllllll the people I am supposed to keep updated. I forgot some people and I feel horrible about that.

  • Have family sleep at home and join the morning of, if possible. This will ensure we all get some good sleep, or at least they will!

  • Bring more things to keep Seeley entertained — he did extremely well while in the hospital waiting. He said hi to everyone, roamed the halls, and was getting commented on everywhere we went! It is very important for him to be there with us. We don’t want to shield him too much from this experience as this is a monumental occasion in our lives and we want him to be a part of it (obviously we won’t be bringing him to see Scott until he has been extubated and he is out of the ICU). Our child is the most important thing in our lives, we are always thinking about what is best for him and our family, and we feel that being with family during this process is best.

  • Lastly, that through the chaos, God’s truly got this. He is working behind the scenes and ensuring that Scott gets the best possible lungs.

Some pictures from the day…

Thank you all for your love and support throughout this process! Your prayers, kind words, support, encouragements, are what we need to hear as we navigate transplant. Thank you from the bottom of my heart — it truly does take a village to survive in this world!

Breathing in the love,

💕Ashley

6 thoughts on “Disappointment and Relief”

  1. It was a whirlwind and such a emotional roller coaster. I would not change one moment I was there, except maybe that the lungs would have been okay. I love you all… Mom aka Mema

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  2. I’m so sorry, but you’re right,God has got this, and he will send the perfect set of lungs your way very soon. We never know the plans he has for us, but I know he will come through for Scott!! My prayers continue 🙏🏻🙏🏻

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  3. Ashley, I can only imagine how Scott felt upon finding out he didn’t get the transplant. The time wasn’t right for Scott to get his new lungs. Hopefully he will be able to get them soon, and like you said, you will be more prepared. Hugs to you and Scott.

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    1. Thanks Margaret! I will be much more prepared next time — I have ordered go bags for all of us and once they get here they will get packed and put in the car!

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