Our little kidney-boy!

Monday 2 March 2015:

Last week, I received an appointment in the post and assumed that it was a new appointment for “Gubby” or “Boo” to habilitation. In all this mess with two autistic boys and one with ADHD, I have sort of forgot that “Gubby” also has a sick kidney. And the appointment was for the x-ray department, for the yearly ultra sound of his kidneys. I guess I will soon receive the afternoon appointment to his doctor as well, that can not be changed, and which every year means having to bring all three boys and us still sitting waiting to get in, an hour after the appointed hour. I dread it and can get angry about it all, already, since they are so predictable and the same thing happens every year. Which says only one thing, that they lack respect for their patients.

We had to be up extra early today, since during the weeks when “Boo” has swimming, they cancel the gym class on Monday mornings. It’s been so good that he had gym at the same time as “Cookie”, since they could jump off together at the sporting arena. But during the swimming weeks, it messes our lives up completely. There is no other way to solve things, than to let “Cookie” and “Boo” leave extra early, so that she first can take him to school and then jump on a returning bus, in order to not be late for gym at the arena. She is so angry about it and doesn’t want to do the sacrifice, when her brother and sister did the same service for her, years ago. We had to beg her to do this all weekend and then she still did not want to get up in the morning. On top of that, “Boo’s” snowsuit-trouser-part (two part one) has disappeared and he stormed out the door without a beanie, even though it was horribly cold this morning. The day was rainy and muddy so it was not the right day, to spend recess in just jeans!

Both “Gubby” and I were extra tired this morning as well. So after the others had left, I crawled back to bed, where he was hiding, far away from the screaming in the hallway. Actually he usually comes out and hides under a blanket in the sitting room, but today he went back to the bedroom. We could not fall asleep again though, so I talked through what was to happen today. He got worried right away and asked over and over if he was going to be stung by a needle. I told him, “no just cold goo on your tummy”, a dozen of times before we headed for the kitchen. At 10:20 I headed off for the hospital with him, since I was unsure about the parking at that time of day. When we reached the parking garage, they had installed a new payment procedure and I got more and more sweaty, the more cards the machine denied. I finally had to bring my reading glasses out and read all instructions for all the options one could choose. One no longer stick the card in to the old slot one used to stick it in to, which was problem number one. Secondly, a big sign said that you had to have a pin code to your card, to get out later on. Right, my Volvo card has no pin code as far as I know, so reluctantly I had to use my own bank card. The one which has got depleted after the book sale purchases and me buying a new pair of jeans. (Someone had not screwed on the lid on the container with blueberry soup, so when I shook it, I got it all over my white sweatshirt with lion cubs on it and my jeans. Brilliant, since blueberry stains don’t get off! I attacked the jeans right away, trying to save them first and by then I realized, that it would be a good idea to have a second pair of jeans, so that one can put one pair in the wash and still have something to wear. As it was, I had to walk about with blueberry stained jeans that day, till I got home for the day and could put on a pair of leggings, while I did some laundry!)

We walked as slowly as we could, to the x-ray department, but we were still there 40 minutes too early! The waiting room for children was full of adults and then “Gubby” refuses to go in. He just stops and doesn’t dare to go in. I had to coax him in and tell him over and over again that “I am here darling!”. We sat down by a green board (the old kind with chalks. Anyone still remembers them?), so that he could turn his back on all people and just see the board in front of him and sit and draw with chalks. They had sponges so I wetted them down, so he could clean off the board and that became funnier than drawing. After a while, everyone had left, except us. It got to be 11:30 and noone called us inside. We sat there till 11:50 before a nurse called us in to the ultra sound room and then “Gubby” laid there on the gurney for ten minutes before the doctor showed up. Why did they not just give us the time 12:00 instead? There we now were, hungry and I of course had forgotten to bring something, thinking we would have been done by that time. They put on “Bamse” for him to watch on the TV screen in the ceiling, but he was too imageconcerned about what was going to happen. The nurse had told him to just lay down and pull his shirt up. Thanks, that doesn’t work!

He has been having ultrasounds since he was born and the gel gets everywhere. And the older he has got, the more upset he gets about putting on clothes with wet spots. He wants to change clothes if he gets a water spot on them, so he just stripped down, didn’t matter what the nurse said. I just let him do what he wanted! Why fight it and I was glad since he had gel all over his back afterwards, when I wiped him down, as well as on his arms and his belly. The clothes would have got wet! And he would have whined till we got home and there was no way to go home afterwards, since we had to fetch “Boo” at 13:50. I did not see the measurements taken on his healthy left kidney which upsets me. Because then I know how bad things are. The right one has grown of course, as usual. This year it was over 12 cm and I know they will say it is not good, but … When the doctor turned the screen to show blood flow, there of course is none in the right kidney and there was very, very little at the edges around the kidney too. I can’t wait to hear what the doctor says! And will she send us to Mag 3 too, which means that dreaded needle! When he belonged to surgery, they always made sure to do both things on the same day, so I would not have to come too many times. But since he was transferred to medicine, the doctor there figures that our village is not that far away, so why can’t I come twice for tests and then a third time for results? She really gets on my nerves! I do try to have a life! Big joke, ha ha!!!

When the doctor walked out, the nurse came back in and “Gubby” told her “Hey you! The doctor was nice to me and put cold slime on me!”. She laughed and I had to tell her that he is autistic, so his language is a little bit unusual at times. Happily he walked out since I had promised him an ice cream. We walked down to get ice cream at the kiosk, on the ground floor and he was delighted. Then we headed for the shopping mall, since I wanted to see if they had some funny teenage book on the sale, for “Cookie”, as a carrot to continue to take her brother to school early on Mondays, for three more weeks. I found one called “Legend”. It seems like it is a bestseller, since it was the only copy left, while they had plenty of all the others, like “Divergent”, etc. While I was looking for something funny for her, “Gubby” grabbed what he considered funny. First of all, he came walking with a

Alfons Åberg puzzle with big pieces and accompanying carrying case

Alfons Åberg puzzle with big pieces and accompanying carrying case

little cardboard suitcase, which I had heard him stand and discuss with the lady who works at the shop. You can not say that he is shy! She asked him if he was going to buy that and he said yes. So when he came and handed it to me, it was little I could say.

Then he started scanning the entire children’s books table. He knew exactly what to go for. The Math books where you learn numbers. He just took two of his favourites, sat down right on the floor and started looking in them. Sitting there talking to himself, saying the numbers and counting. They were cute with flaps image image image imageand pull out things. While he looked at that, I stood and read on the back of a book called the history of the aristocracy. A real brick that I decided that I was not really interested in. I walked up to the till instead, to pay for the puzzle, which I had not intended to buy, and for the book for “Cookie” and let’s say that “Gubby” was disappointed, when I put back the Math books that he by then had come and put in my basket. He had put those two in there and a book about animals, which was really thick and image imagecute in the way that it had one animal per page. He just loves animals and I can see him become a veterinarian. I suddenly just felt that I had spent enough money on books in the past week and also that we really need to save money if we are going to be able to do anything, as far as summer holiday goes. I told him he could choose two, which he did not understand. So we had to discuss that for a while, till I gave up and paid for puzzle and animal book. When we hurried out to the car and sat down to drive and fetch “Boo” at school, “Gubby” asked where the other books were and my guilt feelings started to take overhand.

The whole evening I have sat and thought about “Boo” not wanting to do his homework, as usual, and how “Gubby” shows such interest in numbers. One really should encourage that! How stupid of me to not get those books. Really stupid, since there was only two left of the one kind.

A week later: I went back the next day, two boys in tow, who had to wait in the car, since one can not take “Boo” in to a shopping mall, when there is another child with. I ran in, and luckily the Math books were still there. Book shoppers prefer to go downtown to shop for their books, than doing it in the mall. For once I was lucky!

I still have not heard anything from the Medicine department at the hospital. When are they going to spring the next appoinment on me? I have tons of appointments ahead of me this month, at both habilitation and at BUP. This month is really not a good one, for pressing in more things. At the same time, that kidney did not look good at all. Completely round as a ball and 12,6 cm in diameter does seem awfully much inside such a small stick figure body! One more thing to worry about!

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