Day 29, Jed’s approval to head home came. It may have been later then we hoped, but it did come. We were thrilled with the opportunity to surprise both kids by showing up at CJ’s last baseball game of the fall season. The joy of sitting outside in the fresh air and watching his son pitch for the first time was a treasured gift for Jed and CJ. Looking back, it was a year ago that Jed was struggling to finish the season coaching CJ’s baseball team in Arizona. During that time, he had to start using portable oxygen. The first time Jed wore his oxygen onto the field I asked CJ what he was thinking, wondering if he was embarrassed. His reply was, “Its ok. Dad looks like a dying superman.” Jed and I laughed. How refreshing and humorous are the truthful words of a child. To our children and me he was our superman, and ‘yes’ he was slowly dying, but he was not going down without a fight. It was at this stage we had made the decision to move back to Wisconsin to be close to family. We knew we would need their support for whatever laid ahead for us. The support of our families in this season of Jed’s health decline, waiting for transplant, and now recovery has been an incredible gift.
Returning home and getting back into a routine of life with the kids, school, work, transplant restrictions, and managing Jed’s rehab and treatment schedule has been challenging at times. After being gone for a month, the kids’ excitement was met with a time of adjustment to having mom and dad home again. We were only home for two days before heading back to Madison for Jed’s first check-up, one-month post-transplant. Everything went well and he got all sixty-two staples removed from his chest. He remained under restrictions for mobility and still no driving. Jed has also discovered some not so pleasant side effects from his medications, ranging from swollen face (moon face) to hand tremors to overly sensitive nerves throughout his body. The necessity of the drugs far outweighs the side effects. As with every new challenge we are remembering to be thankful for all the simple things that we now get to do together again.
Part of Jed’s physical rehab is daily cardio, so walking the kids to and from school has become part his routine. On the colder mornings I worry that the air might affect Jed’s lungs (we moved to Arizona in the past to get away from the cold air due to the pain it caused his lungs pre-transplant), but Jed reassures me that it feels invigorating for him now. As we walk the neighborhood together Jed wants to take the long way home to get more steps in, and I, in a hurry to get my next task done, desire to take the short way. It is in these moments I must stop and take in the beauty of the fact my husband is walking with me, talking and laughing once again.
Six weeks post-transplant Jed and I headed back to the hospital for more tests, an infusion treatment, and check-up. His FEV1 lung function is now at 87% (this is a 9% increase from two weeks ago). Chest x-rays are clear and the Doctor gave Jed clearance to finally drive again (it has been about nine months since he has driven). Kylie has enjoyed her season of sitting in the front seat of the van while dad had to be a back seat-driver. We are still waiting on the test results of Jed’s lung biopsy from his bronchoscopy; visually the Doctor told us everything appears to be healing with minimal scaring. This is the first of five bronchoscopes that he will have done within the year to check for early signs of rejection. With every bronchoscopy there is a small chance of a lung collapse and other complications. Pending Jed has no complications and can stay healthy we will not have to return to the hospital for another six weeks.
We are embracing the miracle we have received, while remembering the reality that Jed’s transplant recovery journey is not over. There are many more doctor appointments, testing, and hospital stays on the road that lies ahead. We know that the journey never will be complete until the day Jed receives his forever lungs in heaven or God heals completely the one’s he has been given. These new lungs are on precious borrowed time that come with an expiration date. This is a truth for everyone. God has given us all a journey to walk. Will we embrace the big and small miracles around us and rejoice in the days we have been given? Through the ups and downs this is the desire of our hearts. We thank God every day for the gift of life and our donor and family.
Psalm 118:24, “This is the day that the Lord has made; let us rejoice and be glad in it.”