Saunders Excellent Adventures: Today's Progress

Jon got home and made it to the hospital in one, tired, bundle of pent-up energy and adrenaline. He had been up for 24 hours, and was just making it on sheer effort. At first, Kyle wouldn't even acknowledge him, but then he was soo happy to see Daddy!

We saw the doctors this afternoon, and they explained that at the moment there is nothing to do to "treat" the myelodysplasia, except watch him and monitor his blood levels. If his red blood cells drop, we can give him more blood transfusions, and keep him hydrated.  The doctors will also, periodically, do more bone marrow biopsies -- and if/when --they truly feel that it will turn to leukemia at some point -- leukemia rears it's ugly head, they will begin treatments. She said, "One of the "perks" of Down syndrome is that while individuals are more prone to leukemia, they also respond better to treatment, and generally require less medication."  We will follow the direction and keep vigilant watch.

Today's progress: Kyle is no longer in isolation -- which means that medical personnel don't have to put on a gown, gloves and mask before entering the room.

Jon got here and eventually took off Kyle's soft collar and wouldn't give it back. Now, me, I say -- it's his "security blanket" in the upheaval of his life right now -- leave him alone. Jon says -- he doesn't need it medically, and it can't be a crutch forever. He hasn't asked for it back since Jon left -- so I haven't put it back on -- but I just might if he asked!  That's progress -- for both Kyle and me!

Jon let me pull out and make-up the bed in the room, and he took a short nap. And then, he let our friends drive him home -- I didn't want him driving since he'd been up for so long and was in such a tired frame of mind.

6:30 p.m: Kyle wanted to "walk". Jon was so sound asleep, that he didn't hear us asking him for help. I asked the nurse if they had a walker we could use. He said, "Well, it's almost shift change." Which meant -- don't bother me with this. So, what did we do? Kyle and I went for a walk by ourselves. I stood behind him, but my arm around his waist, and he sort of leaned into me for support, I dragged the IV pole with my other hand. We walked out into the hall, just around the nurses station (maybe 50 steps), and then headed back. The nurse saw us, and said, "Walkers have to be ordered by PT and you have to be measured. But what you're doing doesn't look safe." to which I replied, "Well, we've been doing it this way for 3 years -- whenever we don't have a walker. And since he hasn't wanted to even try to walk, since his surgery, I'll do whatever it takes if he WANTS to be up and walking!" He didn't bug me after that -- but we just headed back to the room, and Kyle got back in bed.

Around 8:30 p.m. we put him in a wheelchair and walked around the halls of the unit. He liked that AND we found the unit stash of movies. So we chose, Pinnochio, and two Sing-Along-Songs.  Having a variety of movies is such a blessing!

One very odd thing has been happening though. When they take Kyle's temperature, which they do under his arm, he is registering different temperatures under each arm. One will register a fever -- the other not a fever....which one is right? They don't really know -- and they can't get the number to match under either arm a second time. So with observation, and the "forehead touch" test....they choose. Never an easy answer with this boy!