Monday, February 4, 2013
Michael is SO excited to go to a Lego event coming up soon. I was hesitant to let him go because of the germ exposure but I talked with the doctor and she asked me if I would regret letting him go or regret not letting him go. I would feel horrible if letting him go means that he ends up in the hospital but that question made the answer pretty clear so he is wearing a mask and going. He will probably end up in the hospital soon anyway so I don't think keeping him away from something he loves is the right thing to do. I talked with the people hosting the event and they did tell me that the Legos are sanitized after each session and that Michael being in a wheelchair and on oxygen wouldn't be a problem. Michael has been doing as well as can be expected lately. His pfts are staying steady at 37% but we used to see anywhere from 40-50% in the past year and a half. The doctors informed me recently that they can't do anything more for him to bring his numbers up. 37% is his new baseline. They did tell me that "it's possible for him to float along like this for years" but I'm just scared that's not going to happen because of how much he's declined in the past year. I'm trying to balance optimism with realism and it's a very hard thing to do. Also, he has been losing weight lately and has dropped from a BMI percentage of 78 down to 37 so we have some work to do with him. He needs to be as healthy as possible for transplant and they like to see a BMI percentage at 50 or above. He has been vomiting quite a bit lately and sometimes vomiting blood. We were told the blood is from his sinuses and now have started doing sinus rinses on him. It seems to be helping some. We are traveling back to Pittsburgh soon to see what they have to say about the time frame for transplant. We don't want to wait too long to list him since his blood type is common and that could make the wait for lungs longer but we don't want to do it too soon either. The longer he can go with the lungs he has, the better. Traveling has become a hardship for us since Michael is getting more and more dependent on machines but we are hoping to take a family vacation to Gatlinburg in April. It is going to be quite a job packing everything up but we are determined to go have a good time and forget about transplant for awhile. I get tired of having this dark cloud hanging over my head and not knowing what is going to happen. It is exhausting and frustrating and I think I have gone through the full scale of emotions numerous times in the past year. Despite everything, I'm thankful that God chose me and I continue to marvel at Michael's caring, giving ways, his fighting spirit, his wonderful sense of humor and how much joy and laughter he has brought into my life and I continue to feel so incredibly blessed that he calls me Mom.