An Up and Some Downs

The last few days have been filled with many downs and one HUGE up.

Ryan and I were under the impression that all he needed to do to be reactivated on the lung transplant list was to go through 10 days of antibiotic treatments for his C-DIF. Yesterday morning we received a phone call that they did not want to reactivate him until he had walked 450 feet in 6 minutes again. Ryan had been walking every day, but he had not been pushing it and had not completed that distance in a while. He had gone about 425 ft on Sunday but that was not documented anywhere. Dr. Ojo said that she would have to talk with Dr. Chang (surgeon) to decide if that was good enough or not.

Later in the day, Dr. Chang stopped by, but it was after a bad "spell" for Ryan and he was not feeling the greatest. We thought for sure that Dr. Chang would say that Ryan could not be listed. He said that he would talk it over with Dr. Ojo and let us know.

Ryan also tried to do some trach masking yesterday evening and that did not go well. He had an anxiety attack while doing the trach mask, but he was able to do it for 30 minutes. We were both really disappointed because it seemed that to be reactivated he would have to be doing trach mask each day for a longer period of time than 30 minutes.

When I got here this morning, Ryan was at 70% oxygen on the ventilator and still not saturating well (oxygen level in his blood). Again, Ryan and I were both disappointed and both thinking in our heads that getting back on the transplant list was fast becoming a fading dream (of course neither of us said this aloud). Dr. Ojo came in and said that being on 70% oxygen now was very different from being on 70% oxygen weeks ago -- mainly because he is still able to get out of bed and walk. She told us that we would hear from her later today once she had the opportunity to sit and talk with Dr. Chang. She also told us that doing the trach mask is not as important as doing the physical exercise so we have shifted our focus a little more (again).

Late this afternoon, Jenny (transplant coordinator) came in and said that Ryan has been activated! Thank, God!!! We are so thankful that he got back on the list and we really consider it a miracle. Ryan's LAS is in the 70's so he is still #1.

Please continue to pray for us as we journey down this road. We are both so happy that he is activated, but still apprehensive about secondary infections or anything else that might put Ryan back on hold. Please pray that Ryan will receive his new lungs SOON! Please continue to pray for the donor family who with share so much with us in their grief!