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Posted by Laura Tubo (4.224.0.41) on 13:55:49 28/09/04
WOW! Am I in trouble, or what? My deepest apologies to our loyal public!!! I guess I have been selfishly enjoying our release since last Friday. It has been a whirlwind of activity around here, and I just haven't been on the computer. I do have dial up in the room, but it is slow. A few times, I tried to go to the business center this weekend, but it was occupied. So, after my short break, I am back in touch. Please forgive me, my friends. You see, being in that hospital room was like solitary confinement. I was not permitted to eat, drink or even go to the bathroom there. Leaving the room involved negotiating with my warden, Joey, for any break at all. Now that we are in "CAN-tucky", I am trying to regain some control. I always said if we save him, we'll have to live with him. I am now trying with only small success to re-establish the chain of command! Saturday began with a visit from the Home Health Care nurse to establish our case. She was surprised that Joey had just left the hospital. She said she is accustomed to seeing these kids in bed, lying around, hooked up to an IV. Joey was running around the apartment when she arrived. Sometimes, I just don't realize how unusual this is until someone points it out to me. After that, Grandma Mary Ann went home for a few days and Jeff and Gina arrived. Tubo life was soon back to normal. I think Gina and Joey only fought about 15 times over toys, etc. We ended up just hanging out for the day. Jeff and I alternated referee duty while the kids alternated fighting and playing. On Sunday, Gina and I were able to escape for a matinee before she had to return home with Daddy. Joey, of course, missed her the minute she left---who would he fight with? Monday, we were on our own. We went for his first follow-up clinic visit. He needed a platelet transfusion. His ANC was up to 640--the highest yet. Otherwise, he is doing very well. I give him an IV med each evening to boost his white cells. I am told he will continue to need the platelet transfusions for awhile. The blood components come in in the order of red, white and finally, platelets. This morning, Joey was wrestling around in bed and bonked his head on the headboard. He was fine, but I warned him to be careful. He said, "HELLO!!! Mom, it's ok---I got platelets here!!" Obviously, I am not in charge. Anyway, we continue to play and laugh and fight---it is a wonderful existence for the moment. He is doing so well, that they didn't want to see him again until Thursday. After that, we are trying to get home. We are using all our connections to see if we can accomplish his radiation in Akron. We met some initial resistance, but these people don't know who they are dealing with. We are the Tubos and we have the largest prayer chain in the world!! We hope to be able to come home this weekend. I won't let myself believe it, just yet. We have to arrange for his radiation off site from Children's, get it covered by insurance, be sure that General can do pediatrics, etc. Just a few loopholes. In the end, I will stay if that is what is best for Joey. But, if he can receive excellent care there, then, that is what we want. Doing the radiation here would add 3 weeks to our stay. So, that is where we are at. We should know more in the next few days...and, I PROMISE to keep you all informed. Thanks for all your love and concern. Grandma Mary Ann just arrived for a few days. I am off to the Beauty Shop tonight to get a hair cut. Something has to save my look---my hospital diet plan didn't pan out. I am looking forward to fall clothes--nothing like jeans and sweaters to hide the sins of the Summer!
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