Last night was a pretty rough one for Gid. He spent the whole day today in his room resting so he could make it to Chazs birthday baseball game tonight and though hes hurting bad tonight he says it was worth it. Says hed do the whole fun weekend over, too, even knowing how hed pay for it afterward. :-) Tomorrows a huge day for him, too. First, he has his next 5 minute walk test and Pulmonary Functioning Test (PFT) which measures how his lungs are doing and gives us that magic number that was at 27% last time and the docs say needs to be at 40-60% for him to survive without a transplant. Then he has his appt with the pulmonologist, lunch, and the first of three days in a row of high dose steroid IVs. Like I said, hes been in a lot of pain the last 24 hours and we need him to feel well enough to do the tests in the morning. The steroids usually hit him hard and make him feel nasty for a week or two so once we start the IVs we wont likely be able to get the PFT. Please be praying he will be able to do the tests and that his spirit will remain positive through the crappy side effects. Tonight as we got home from the game and were getting unloaded from the car I watched him through tears as he sat, breathing deeply, trying to relax his body through the pain. He opened his eyes and said in a shaky, broken little voice, Im glad it was two weeks of feeling good and only been two days of this pain. Thats my boy. :-)
Posted on: Tue, 06 May 2014 04:04:41 +0000