So last night Maggie and I went with Art to visit Micaiah. There have been several days I could not go due to sickness and he had been asking for me to come.
I was pleased to see how well he was doing. He was very happy to see Dad walk in with us with him. He was in a wheelchair. We are told that he loves to be up and about in the wheelchair. The wheelchair he has to use is huge for him, but we asked and were told that they would order him a wheelchair fit for him. She said we'd have it before we leave, but I don't see how that's possible so maybe she just meant it would be ordered before we leave.
We finally have a date up for "expected discharge". Unfortunately it is NOT exactly accurate. But at least we are seeing an end in sight.
I had told you about how we are expected to take a 40 hour course before he can come home with him so that we know how to do his dialysis at home. The nurse who had called to try to schedule the training had specifically explained to me that he could NOT be discharged UNTIL we went through this training.
Well, this was not exactly accurate. I got a call from his doctor on Saturday morning trying to work out the scheduling/discharge plans etc. What we were NOT told ( and if I could just have a nickel for every time I've used the phrase "what we were not told" the past two months, I'd be a rich woman, I just have to say)...
Anyway, what everyone involved neglected to explain to us was that Micaiah actually has to be discharged BEFORE the training because he is PART OF the training!
I will admit I was very frustrated and told that surgeon so. We have never done anything like this before. They are the ones who know the procedure. How do they neglect to tell us details like this? This makes a huge difference in the already very sketchy plans.
This means that instead of him being cared for in the hospital while we get properly trained, they actually are expecting us (in our case, my oldest son) to drive out to the next city every day WITH Micaiah, transporting a medically fragile boy who just got out of the hospital in and out of the freezing winter weather (two things he very much hates: the cold and being moved or transported) and that this is supposed to happen back and forth five days in a row, with Micaiah being there outpatient for the whole week. I do not feel this would be wise for him at all. And if anything were to happen that week, if he were sick, or anyone couldn't get him there, we would not yet be trained or have the equipment at home to do his dialysis, and we would have an urgent situation on our hands. But we were now told that the training is done out-patient only (the opposite of what I had been told all along) and now we were scrambling again to figure out how we could possibly arrange this.
I proposed that if we were the only family being trained -- and he believed we probably were -- and since we would be getting the equipment in our home anyway, wouldn't it be far more preferable and logical to have the trainer come out to our home and teach us how to do it in the place we would be doing it, even if we had to pay their travel costs, than to have all of us transported to a training center? So, the doctor told me he was going to pitch that idea and really push it since our "situation is unique". We're praying they will somehow work out a way to do this.
They will be doing Micaiah's dialysis with the peritoneal dialysis all this week to make sure it is working well. They wanted us to do the training the next week, but only told us this on Saturday and we already have a packed week with long-awaited (and some already re-scheduled) appointments for our other kids from Raleigh to Charlotte. It is impossible. So they said that they would try to schedule it for the following week. So that is where we are on that right now. Frustrated, but progressing.
More importantly, how is Micaiah doing? Well he was more animated and happier than I have ever seen him. He played with Maggie and seemed to enjoy it. The nurse chatted with us for a long time, which was very helpful. She told us that he very rarely plays with any toy or book or anything other than his tablet, so she was pleased to see Maggie showing him how to use the Magna Doodle and him cooperating.
They brought his dinner while we were there and he was very happy to eat everything but the broccoli. Then we asked him to show us around. He wheeled out with us to the nurses' station (which is right outside his door) and he remembered the names of all of the nurses. I should also mention that the tablet he uses for his music he also loves to take pictures with. He had taken hundreds of pictures of the nurses, dialysis, his room, his toys, himself.. LOL. And he showed us all of these as well.
The nurses all seem to love him. They play with him a lot, and he is spoiled and teased and teases back and loves it. I don't see how he could possibly be getting better care than here.
He played with Maggie in his wheelchair. Maggie ran in circles around him and he tried to catch her. He laughed and laughed, which is progress, because in the past he had not been receptive to this sort of play at all. For one thing, he would have gotten angry over not being able to catch her, and while I saw a couple twinges of that brewing, he never did get really upset. Secondly, he was going very quickly and recklessly around in his wheelchair with no complaint. This is the boy who would absolutely refuse to go up or down a wheelchair ramp both in the Ukraine and when we first got home. He would plant his hands firmly on the wheels of his chair and say "No" and when I would force him to go v e r y s l o w l y up or down a ramp, he would protest and whimper and fuss the whole time. Now he is tearing around the halls and chasing Maggie in circles. Progress!
He wanted to take lots of pictures of us, and wanted Art to take pictures with our camera of him with us. Maggie was awesome, as usual. She has a heart as wide as the sky and made him play lots of things with her. She makes up games and learning activities too. She is like this with Levi too. She doesn't really take no for an answer and just cheerfully says, "Come on, you can do it!" They went into the play room and played with balls and a piano. He played for a while trying to roll pool balls into the corners on the table. This took a long while, but he enjoyed it. You can see the difference in his face between now and his past photos.
He is also learning a lot of English words and progressing with that as well. He does not know near as many words as Levi yet, but the fact that he is willing to learn, and is using his English, is great. As you can see in the photo above, he is relaxed, happy, and looking well. He has gained some weight while in the hospital as well. We were told that after his last surgery a week ago, he had some very hard days where he would not talk to anyone or do anything, and would get pretty angry. They thought it had to do with pain and discomfort, so when he was actually crying, they called in the translator to try to find out what was wrong. Turns out he was upset because he did not want to be in his bed; he wanted to be in his wheelchair up and about.
For those who are praying for us, please pray that they will somehow work out our training so that it will be as convenient as possible, hopefully in our home. Also pray for us as we continue to adjust to all the appointments and routines (added to those we already had) and that our attitudes will be good. It is easy to get discouraged in the midst of all of this and feel like there is no end to it all. Well, that's speaking for myself. Art is awesome and takes it all in stride. He is a rock. He burns the candle at both ends and in the middle just with working ten to twelve hours a day and then caring for things at home and then at the hospital. I picked a good one there.
And now for the Cuteness....
I realize that there are many people who won't be interested in this at all. I went to download the pictures from the hospital and realized that all the rest of the pictures on the camera were of our new pets. In the midst of chaos and distress, there are these little buddies that make us smile each day.
Rhubarb sleeping on Eden's lap. Ruby is very social and loves to sleep on people, beside people, on top of people and with people. Nobody's complaining. She's sweet and adorable.
Couldn't resist the sherpa hood.
I was sitting on my office chair, and Ruby jumped up and crawled down my side into my sweater. Then a minute later she was quiet. I opened the side of my sweater and saw she had curled up on the edge of my sweater like a hammock, and had fallen asleep. This kitten knows how to sleep anywhere and loves to sleep.
And this is Candice and Canaan's new puppy, which incidentally lives at our house because he is too big to live at her apartment, and because they work and nobody would be around to care for him. So, basically, a new Baker household member.
Introducing: Sir Douglas, Duke of Waffleton,
He's a wall-eyed, goofy, energetic mix of who knows what.
When he first came home a few weeks ago, the kitten would hiss at him, and even Biscuit was pretty suspicious. But he waffled his way into their hearts and trust, and now even Ruby plays with him. Pizza is still undecided.
When I look at these pictures, I can't help but think about how much my Grandfather would have loved to see this guys. He loved animals so much, and these ones are pretty cute!
The kitten loves to curl up in Hannah's hair. And Hannah, as always, loves all animals.