Wasn’t I just saying something about, “If I had a nickel…”? Well give me another nickel.
Eight days ago we had a three hour meeting with both surgeons, two social workers, the physical therapist, and the nutritionist. It was then that we learned that the plan to have Canaan trained for the dialysis (as was already approved) would not work because he would not be the person doing the dialysis, a major detail they had neglected to tell us. Bottom line was that the only people who could really take the training, based on their criteria, was Art and me. Those I had spoken with in trying to set up the training had been pushing for the training to start this week, Jan 27-31. We said that the earliest we would be able to arrange Art’s work, school schedules and childcare would be this coming week, Feb 3.
This week I have been calling trying to confirm what time we are supposed to come in. We have worked out all the arrangements for us to manage to somehow do this. I did not receive a call back to confirm the time. Then Art gets a call today from the dialysis training people saying that they need to set up a home inspection visit before they can arrange the training. < five cents please >
If they knew a home inspection was necessary, why didn’t they arrange it weeks ago when they first knew that Micaiah would be having peritoneal dialysis and we would have to have training for it? I called the dialysis folks and learned that the surgeon did not request the home visit until the day before yesterday.
I called the surgeon.
She was very business like and told us that they were waiting to hear who would be doing the training. < huh ?!? > First of all, they left us no choice as to who would be doing the training, because they told us Art and I were basically the only people who could do the training. And when we had left the meeting, we had told them to set it up for next week and we would make the appropriate arrangements. If they were truly “waiting to hear” from us, why did no one return my calls when I did try to contact them about this?
So where does it stand now? Home inspection visit is first thing Monday morning. After that, paperwork will have to be processed to set up the training and I was told that they “have no idea how long that will take.”
This is insane. This kid, who has already spent all his life waiting, is sitting in a hospital room waiting to come home, and being delayed for weeks because of paperwork? And to the tune of how much money per day? I cannot even fathom it. Where is the sense of urgency? Where is the communication? Where is the compassion? I am beyond frustrated with all of this.
I appealed to her to do everything she could to expedite this process. I asked her, personally, as a mother, how she would feel if it were her child waiting weeks in a hospital because of paperwork, and how much comfort she would feel about it if she were told the things I was being told right then. I told her this kid has already waited all his life, and lost all that time, and God only knows how much time he has left. Each day he is kept from coming home to his family is just inexcusable.
Every time we think we are on the home stretch, something else happens.