After 19 days in the hospital Jed was discharged. Being able to leave the hospital was invigorating and intimidating. In a weird way felt like we were new parents. We were filled with the anticipated excitement of a new journey together, yet overwhelmed with fear of how to care for this new delicate life. Of course, instead of a new baby, we were leaving with new lungs. Yes, very different scenarios, but with a similar rush of emotions.[...]

To the Family of My Husband’s Donor,

As I witness my husband breathing deep with ease, I recognize it is because someone else no longer is. Behind the miracle of my husband’s double lung transplant is another family’s tragedy and loss. There are no words that can express our gratitude and awe of the miracle our family has received. We only pray that you can find some healing in knowing that your loved one has touched other people’s lives through their gift of organ donation. No words can truly express what we have experienced. Thank you feels too simple to say, yet I hope you will know the weight of meaning behind those two words.[...]

100% was the reading on Jed’s oxygen monitor during pulmonary rehab Friday. He hasn't needed oxygen since his 2nd day post-surgery, however this was the first time the monitor read 100% oxygen concentration. It was a wonderful site to see on the monitor. Later that afternoon his 3rd chest tube was removed. His right lung was now fully supporting itself with nothing relieving the pressure surround the lung. The follow up x-ray showed that there is still a pneumothorax (air pocket) on the right side of his chest cavity. They are hopeful that with time and exercise his body will continue to absorb the air.[...]

As evening came we were hopeful like always that he would get some sleep. He finally did! Jed got a decent night of sleep and woke with a renewed spirit. As the day progressed the pain and tension in his back and neck eased as well. Finally, it felt like the road to recovery was picking up pace. Physical therapy and pulmonary rehab started to work with Jed on daily exercises for leg, core, heart, and lung strength. His upper body will still be under restriction for some time due to his incision. Jed’s mom came for a visit during the day and marveled at seeing how well Jed was doing. With Jed turning the corner health wise, we decided it was time I start sleeping at the hotel down the road. It was difficult to leave him, yet a nurse reminded me that once he leaves the hospital he is all mine and there is no nurse button to push for backup.[...]

Waking up in my lounger chair Sunday morning in the hospital room I overheard Jed telling his nurse how God challenged him in the night. He shared how he was asking God for an hour of sleep before 4 am when the x-ray team would show up. Knowing that God’s word says He gives rest to those he loves, (Psalm 127:2 “In vain you rise early and stay up late, toiling for food to eat- for he grants sleep to those he loves”) and that God gives to those who asks according to his will, (1 John 5:14-15 “This is the confidence we have in approaching God; that if we ask anything according to his will, he hears us. And if we know that he hears us – whatever we ask – we know that we have what we asked of him”). Yet he laid there with unanswered prayer. He got frustrated as the time frame he asked for passed. God ended up bringing rest later around 5 am in His timing. When Jed woke up God ask him are you willing to follow my way and not Jed’s way? The challenge is that we may know God’s word, and God’s will, but struggle to surrender to God’s way.[...]

Thursday night Jed’s pain was under control and he was excited to get his digestion tube in his nose removed. Finally, we felt he could get a good night sleep. Sadly, the strength of the steroids going into his body made him too restless to sleep, he said he felt like crawling out of his skin. Despite the lack of sleep Jed’s spirits were much higher than the last 36 hours. Jed’s dad came to relieve me for a while allowing me to go to the hotel to shower and nap. Stepping outside of the hospital I was amazed at how refreshing the cool air was. I was so grateful for a big bed to sleep in and goodie packages from friends to encourage me.[...]

Unfortunately, due to Jed’s digestive track reacting to the drugs he has received he now has more tubes in different locations. Currently he has 6 tubes going into his body besides his standard IVs. Often getting up and walking can bring relief though. Liquids and solid foods are still off limits until all the tubes are removed and his digestive track is functioning again on its own. This has certainly been a test of mental and physical strength for him during his discomfort.[...]

The road has started with complete awe to see Jed breathing again with ease. On the second day, he was fully off oxygen assistance, after needing it for over a year, and holding steady at room air. He said he couldn’t remember what it was like to easily breath in and out of his nose. For so long now his breathing had been labored and he had to breath out through his mouth. We even discussed how in the past due to Jed being winded I would answer the Doctors questions for him. I had gotten into the habit of finishing his stories and statements. He looked at me yesterday and thanked me for always helping, yet now he has the breath to talk for himself. Laughing I told him he may need to give me time to readjust to not taking over for him.[...]

7:45pm on September 1, exactly 7 months on the double lung transplant waiting list. 

We had just finished a Nagel family dinner with my siblings and their children. I was also in the middle of doing a “back to school” hair style on Kylie when Jed’s phone rang with a potential donor match. We did the usual routine of running around grabbing our bags, family helping with the kids and loading the van. We arrived at the Hospital around 10:30pm and got settled into his room, then the process of waiting started. We were informed that if the surgery happened it would be early the next morning around 7am. We got to sleep around 2am. At 5am, we were told we needed to get up, shower, and get Jed prepped and ready for when they might come for him. 7:30am and no one had come to take Jed or do the final medicine prep. At this point we were starting to feel like this might be another dry run. Then walks in the anesthesiologist with his team to check in, so we were asked to say our goodbyes. Jed’s father prayed over Jed and prayed for the surgeon and his staff, then by 7:54 they wheeled Jed out of the room. Holding my breath knowing that this is not certain until the incision is made. So, we wait to hear, praying that Jed will wake up this time with new lungs.[...]