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.
Phase two involves Jed and I leaving the hospital, but remaining in a hotel in the area for a week. Attempting to book a hotel for this phase was not completely smooth. A local business (Epic) was having a large convention soon and it appeared that all the hotels I was trying to book were sold out. After all the ups and downs over the last two weeks I was becoming frustrated with a hotel not falling into place. After I had a slight tantrum, to say it nicely, Jed turned to me and asked if I had taken the issue to God in prayer. I rolled my eyes with a small amount of sass and surrender. Sat down and prayed. To Jed’s complete delight the next hotel I called not only had an available room for us, but it was brand new. No one had stayed in our room yet, so it exceeded our standard of cleanliness due to our concerns about Jed’s immune system.
During this phase of recovery Jed continues his pulmonary rehab, lab tests, and occasional check-ins with his transplant team at the hospital. His coordinator explained that this phase before returning home is meant to give us a test run of everyday life. We need to use this phase to learn how to balance life with Jed’s transplant medications and restrictions, learn how to go out in public while avoiding viruses or bacteria, and learn how to find a rhythm of rest and exercise for Jed in his recovery. So, with our first night out of the hospital we were off to dinner! It was refreshing to not have any medical staff, tube attachments, or hospital gowns apart of our date. Sadly, we may have slightly failed our first official outing. While attempting to take his pills during dinner Jed was unaware of how shaky his hands had become. Two vital transplant pills ended up lost on the restaurant floor. Fortunately, we had all the medications with us in the van still from leaving the hospital. We are learning together what new challenges there are in post-transplant life. He is learning to put on his “duck bill” mask when the wind picks up or when the cashier at the checkout is coughing. He gladly will trade the lovely oxygen tank he used to pull behind him for a mask.
Over the weekend we were blessed with a visit from family. The kids came for an overnight stay with my mom to celebrate Kylie’s 'Forever Day'. Jed’s brothers and their families drove down for lunch on Sunday as well. We got to celebrate Jed’s new lungs while enjoying the warm weather on the hotel patio and watching the cousins swim. Jed still needs to pace himself throughout the day and not allow his pain management to go untreated. He stated that his struggle used to be that his mind and body told him to go, but his lungs said no. Now his lungs say let’s go, but his body says no. His mind must be reminded that the healing process and muscle conditioning takes time.
Tuesday, September 26, was Jed’s first clinic visit post-transplant. The expectation was that the Doctor would give us the ‘green light’ to go home after his check-up. Overall Jed has been doing well, so we were planning to be able to pack up and head out. Jed’s incision site has been healing well, however he had to take over cleaning it this last week since I was quickly reminded why I did not pursue a nursing career. His lung function is now at 73%, we were told this is very good for 3 weeks post-surgery and it will continue to increase over time. He passed his 6-minute walk test with flying colors, oxygen only dipped down to 98%. And his x-ray showed the air in his chest cavity is continuing to disperse. However, the Doctor did have some concerns. Jed has been experiencing light headedness when getting up quickly and edema in his left leg. His blood work also showed that his acute kidney injury remains and his anti-rejection medication that is necessary, yet hard on the kidneys, was extremely elevated in his blood. At the end of his appointment we were told that they wanted further testing on his levels and an ultra sound of his leg to rule out any clotting. We were not free to return home. Possibly we could leave by Friday if his levels can get back into range or next week Tuesday after his next clinic visit. Of course, we were disappointed, more so because we would have to inform the kids. We are thankful though that the medical team is thorough. Jed looked at the Doctor and stated, “We have come this far, there is no turning back. We are all in.”
A song Jed’s dad has played numerous times repeated in our heads as we left the appointment.
We've come this far by faith
Leaning on the Lord
Trusting in His holy Word
He's never failed us yet
Oh we can't turn back
We've come this far by faith
Don't be discouraged
With trouble in your life
He'll bear your burdens
And move all discord and strife
Quick Update: We were informed today that there is no blood clot. Thank you for your prayers as we continue this journey.