I had a wonderful birthday on Tuesday, with flowers and a surprise dinner arranged by my children (26 and 23). We went to Nick and Sam’s Grill in Dallas on Belt Line (or Addison?). The only one missing from the table was Randy…but knowing he was safe and sound at UT Southwestern University Hospital gave us all joy. Of all the birthday gifts I have ever received, Randy getting lungs has been the best! It is still just unbelievable to me. (By the way, Nick and Sam’s Grill has hot pretzels! I LOVE hot pretzels!)
I went to visit Randy tonight and took him an earring and his wedding band (both had to come off when he went onto ECMO), and many cards and photos of the flowers I received. I told him about all of the food and snacks as well. I’ve read him emails and texts, the love and support from everyone has been phenomenal. Looking through the cards, he expressed appreciation, but said he was disappointed there were no checks in them! Kidding, kidding.
He is quite hard on himself regarding his physical therapy. He just cannot understand why he isn’t getting stronger, faster. He cannot stand or walk on his own yet. I try to give him some perspective. He has been in critical condition, in ICU since August 3. His lungs continued to worsen, until he had a respiratory crisis and they had to put him on life support, an ECMO and a ventilator. He was on his back, not moving, for 12 days. Then he had a lung transplant! A double lung transplant. There were a few complications afterward, mostly his rapid heart rate (fixed by ablation late last week when he had to go back to ICU from the floor) which kept him from doing any physical activity. He has lost over 35 pounds, his muscles have atrophied. I told him he is being far, far too hard on himself. It is so difficult for him to lie in bed, not able to walk or stand on his own. Randy has never given anything but his best to his work…and physical therapy is work. He is terribly upset by what he sees as “lack of” or “not enough” progress. However, he is alive. That, in itself, is incredible, and he does improve every day. Trying to imagine himself on life support for so long is inconceivable to him. We went over the timeline again today, so he can truly understand why he is so weak. It is going to take time. Lots of time. And he now has time. A miracle.
Tomorrow we are meeting with the Transplant team nutritionist to discuss foods he will be able to eat, and not able to eat. I am learning something new every day!
Physical therapy duration of care varies from one patient to another. Frequency and duration depends on the condition of the patient and individualize as well as appropriate therapy care is always necessary in every patient.