The Road to Recovery (Days 6-7)

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.

Friday morning Jed was informed that his x-ray still shows air and that now it is inside his chest cavity wall, it’s called crepitus. You can feel it under his skin, it makes a crackling sound when pushed on. The air is coming from a small leak. The air can hinder the lungs from attaching to the chest wall cavity. Again, this can be another common side effect, but it will be closely monitored. The best way to help the lungs attach and move the air out is for Jed to work hard on coughing, deep breathing, lung exercises, walking, and wearing a compression wrap. By doing these things it expands the new lungs and helps them to fill up the space of the chest cavity moving the air out and strengthens the lungs allowing for better connection to the chest cavity wall. Coughing is not pleasant when there is an incision across your whole chest. He did receive a cute new pillow to hold over his chest when he coughs to ease the discomfort (lung pillow in the picture above). The nurse told us that his incision is the most painful incision to have. That was not encouraging to hear. Jed of course does more walks than what is required and is determined to get these new lungs into shape. The pain meds definitely help with the process.

With the weekend approaching our hope was for the kids to come for a visit. Unfortunately, with the return of school comes the return of germs and colds. Kylie had classmates that went home sick this week and she felt slightly run down herself. It was disheartening for the kids to be told they cannot come see dad due to the chance of sickness. Thank goodness for FaceTime. We must be careful not to expose Jed to any bacteria or viruses. His immune system is extremely low due to the immune suppressant drugs. He will be on these drugs the rest of his life now. In the beginning, they are stronger and slowly they will taper down over months to years. His body will always have to be monitored. If he gets sick he will end up in the hospital since he doesn’t have a strong immune system to fight it off, yet if his immune system gets too strong then his body will recognize the foreign object (the new lungs) and start to reject them. This will forever be one of the new challenges of living with a lung transplant.

As the evening came we were hopeful that tonight might be Jed’s chance to get rest. Then a horrible migraine set in and took Jed out. We have been in the hospital for a week now and it was starting to feel like we would never sleep again! Despite the nurse’s and my efforts, and the drugs, Jed got no relief. He has been kept up all night by either the steroids or pain. Why Lord, why are you not bringing relief or helping him sleep? I found myself pleading with God as Jed sat with his face clinched in pain. The only comfort he found was meditating on scripture and prayer.

James 1:2-4 “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”

Philippians 4:6-7 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

2 Corinthians 12:9, “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

By late Saturday morning Doctors started making rounds. Pain management team discussed other drugs that we could try to help with his discomfort. Then came in the kidney specialist informing us that Jed’s kidneys have acute damage from the surgery and that they will be monitoring his numbers and running an ultrasound for comparison. Again, this is common and the kidney levels can come back into place or dialysis could be needed to assist them temporarily. For now, the damage is minor. We were made aware that with transplant the main drug a person takes for anti-rejection takes a toll on the kidneys and some people end up having a kidney transplant as well down the road. Receiving information is necessary and good but can be difficult to process and not dwell on. Jed was still in pain from the migraine and pain from the surgery when one of my favorite Nurse Practitioners came into the room and said she heard about Jed’s migraine. She recalls in the past during one of his hospital stays Jed got a migraine due to lack of sleep and that a caffeine pill helped take the edge off. She also prescribed some sleep meds to help Jed rest. So that afternoon Jed took a 3-hour nap! Following the nap, he got the caffeine pill and sure enough it helped take the edge off. Thank you Lord for using the NP to answer our prayers.

One step forward, two steps back feels like how Jed’s first week post-transplant has gone. All the bumps in the road have been challenging physically and mentally for him, but he keeps pressing forward. During his last dry run while waiting to go into surgery all the staff came in to introduce themselves and see if he had any questions. When they were done Jed was left in the holding room by himself waiting. Anxiety kicked in. Jed tried to remain calm, yet his heart kept racing. He called out to God to allow him to have peace. God answered, he settled Jed’s heart and mind and reminded him that his job is to fight to the end and never give up, and God will do the rest. That moment with God in the holding room has been an anchor for Jed during the tough times. It also has brought comfort to me to know I am not the one pushing Jed to endure this journey of transplant for my sake or the kids’ sake, but rather it is an act of obedience between God and him.