Well, today they switched all Tuckers medicine to tablets so we can take them without having to thicken them. He did rather well, all but one of the diuretics, it was big and he felt it inside the pudding so he gagged and spit it out. His methadone is liquid but he took it well in a 2 oz juice, thickened of course. So,,, we got to take out the feeding tube. And "knock on wood" we have not had a gagging spell since we did that. I do think, however, that the gagging is part of withdrawal. (throwing up is part of withdrawal, but Tucker cannot since he has the fundo which prevents it, so gagging and dry heaving is what he does) He hasn't eaten much in the past week either. A few yogurts and puddings, few bites of things here and there, but nothing significant. That too will change as we continue to wean off all these medicines. IF we were to go home right now it would be 9 in total that we would go home on. WOW!!!!!
Tucker stayed off oxygen all day today and half the day yesterday. We had to put some on him last night when he slept but that should get better as he gets stronger. He has always been a position kid, meaning his oxygen levels in his blood depend on the position his neck is in. If cocked back, great, the slightest tilt forward and low.
We went to the playground, he climbed the stairs to the slide and then slid down!!! Walking more and more and very playful. He bats his eyes and flirts like no other (must have learned that from Daddy). He doesn't like to be in the room much, other than for naps. Naps have been 2 to 3 hours each day. Down like at 2pm and goes until 5pm. I really have to watch, until the medicines are weaned, letting him sleep past the dosing times. Today he slept an hour past his methadone dose time and we woke up shaking-it did fix when he got it (my little addict).
We got to see the clowns today, it is a few people dressed up that come around and sing for the kids. Tucker loved it!! (understatement) He also got to see one of the therapy dogs, for which we got our picture taken with. We haven't seen the PT gal in a few days, I am really working Tucker myself so I am not worried about it. We went out to the garden, and do about twice a day, and kick a big kickball around. He lays on it, throws it and just has a good time. Then we go to the play room and play cars, throw beanbags, and ride the tricycles. He is doing better each day....his eyes are sparkling before that smile hits his face again. OH what a blessing he is.
1 week ago