Looking For New Lungs for Michael!
My name is Laura. My husband, Michael, is 35. We are a young couple and have been married since 2016. Michael was diagnosed at 6 months old with Cystic Fibrosis (CF). His lungs were much better when he was younger, but we still enjoy doing plenty of things together. We love spending time with our families, our 2 nephews and 2 small dogs, and going to the Marvel movies on opening night.
June 1, 2020
Michael came home March 27th from his 106 day stay in the hospital. Due to some complications, unfortunately, healing was not going as smoothly as we had hoped. He ended up back in the hospital due to high C02 and tacro levels on May 16th and did not come home until May 27th. I felt SO BAD that I couldn’t stay there with him due to hospital policies of visitors during Covid 19. Fortunately, we were able to facetime a little and text here and there. THE GOOD NEWS- He is home now and doing so much better. He’s eating almost 3 meals a day and is going for hours at a time without oxygen. We are anticipating physical therapy starting back up so we can have even more momentum moving forward. Until then, we take it day by day, but I am full of renewed optimism that he will continue to get better each and every day. Thank you so much for your continued support!
March 19, 2020
Day 97: We might be going home next week on March 27th!
Michael is in inpatient rehab at the same hospital now. He gets 1.5 hours of Occupational Therapy per day and 1.5 hours of Physical Therapy per day. He is working hard on his strength and balance.
Nausea is his biggest enemy at the moment. It has definitely put a damper on his healing. Unfortunately, nausea is a side effect of many of his anti-rejection medications. The doctors are working very hard to find medications to help his nausea and calm his tummy.
**Updates in the photos- there are pics of Michael walking with the PTs and doing some exercises. He recently got to work with Virtual Reality for Occupational Therapy (which I thought was pretty cool!)
Check back soon for more updates!