Finally, I am home after a very long, strenuous day at the hospital. “Gubby’s” kidney tests took place today and I had to have T. take the day off, after the fiasco last year, trying to take a simple blood test on him. He got so petrified, he screamed so bad and got entirely stiff as a board, that I truly feared for today. I sat yesterday not knowing what the right thing is to do: Tell him in advance what is going to happen or just spring it on him when we are there? I decided to tell him ahead to see if it made a difference. Let’s say, I should not have. I could tell he got scared yesterday and this morning he woke up early and wanted to discuss needles and shots. I begged him to go back to sleep and I had to tell him that mamma was too tired to think, let alone talk about it. I know, not very nice, but I was exhausted.
When I got up, I checked the papers again to make sure he was not supposed to drink anything before leaving home, and discovered that the hospital has made films for children to watch. Films which do not work on an iPad! And it took forever to get in on the big stationary computer. When we finally did, it was ridiculous. The nurse is a donkey and the child who will go through Mag3 (needle in arm, receiving radioactive fluid in the veins while being filmed by a gamma camera), is a rhino named Nelly. My son knows he is not a rhino, so how could he relate to that film? Why on earth do they not make a cartoon with humans going through this? “Gubby” gets his needle in an arm, not on the foot like the rhino did, since obviously a rhino do not have an arm. But we let him see the film and he was quite confused. Then you could see them setting a needle on an octopus named Billy. That film was even worse since this gigantic beetle set the needle standing in the way, with her back covering up the screen. So what “Gubby” needed to see was not shown, only talked about and he is Autistic and has problems with understanding spoken language. At least when it speaks about complicated matters like these.
We headed to the hospital late, so we were stressed out and did not have the time to stop anywhere to buy chocolate, which I usually bribe him with at the ultrasound. But it went pretty well without. He was very concerned coming in, asking them if they were going to put a needle in his arm, but we all four assured him that “not yet, not in this place, later”. He of course gets upset about all the gel being smeared on him. Since they have to check both kidneys and the bladder, he has gel all over in the end and it makes the clothes cold and wet, when they haven’t been able to get it all off. But he talked to the Swedish-Finnish doctor throughout and watched “Emil in Lönneberga”, which they showed him on the ceiling TV. I could see that the healthy kidney is 10,4 cm wide and the sick kidney is 9,85 cm. So they are pretty even in size but of course on the screen, the healthy one is full of “stuff the way it should be but the sick one just looks like a big black hole. Scary. And the doctor had to call in an expert to re-do the whole examination since she did not trust her own results, so we were there for basically an entire hour. The second doctor did not look too concerned though, was just matter of fact, so I am not going to fret.
Then we took the lift down to Clinical Physiology for the Mag3. It took a while before we got in but “Gubby” got busy, since the children’s waiting room had new toys. Three teletubbies and their hill full of holes to jump in to and slide down different slides. His dad got occupied taking an entire parking garage apart, which was very embarrassing because he left it in a worse condition, than when we found it half broken. “Gubby” was so concerned when we had to go with the technician. He calls all white dressed people doctors and I guess for one day, they got to feel proud over their promotions! They put EMLA cream on four places and he was scared. I decided to document it all this time. First of all, BUP has told me to document everything in his life, so we can discuss it all with him afterwards. Secondly, since the films from the hospital are so bad, now I will have my own pictures for him to look at, in the future, so he can prepare and hopefully not be scared. So I took photos of him getting EMLA on his arms and hands. I asked if the doctor had ordered a blood test this time, since I did not want a repeat of last year’s fiasco of being sent to the health clinic in the village, a week after they had a needle in his arm already, and could have taken blood that way. They could not see anything so after the EMLA cream was put on, they sent us down to the kidney unit of the hospital, to ask the doctor’s secretary, if blood tests were ordered. When we got down there, the entire department had gone to lunch. So I had to chase down a nurse from the diabetes unit, and ask her where I could go, since we had to be back at Clinical Physiology at 13:00. She finally came up with the idea for me to go to the surgical unit and I found two nurses there who could check the computers. Sure enough, a test was ordered but people at Clinical Physiology had not been told, so a new circus at the health clinic would have ensued, if I had not been running around like this, sorting things out. How insane is this? That the parent has to sort out the mess they create when they do not talk between departments?
They wrote out the papers and we headed for the hospital kiosk. We found a “Cars” magazine for “Gubby” and with that in our bag, and having promised him both a hot dog and an ice cream, when it was all over, we walked back. I read the magazine to him and then we finally understood how this funny Disney Princess telephone worked, so he and I sat and played with that till we were fetched. He was seriously frightened at once and did not want to sit in the chair where they set the needle. I had to make T. sit down there and hold “Gubby” on his lap. T. has such a big belly that there really was no room for “Gubby”, but T. is stronger than me and can hold him firmly, which was needed. He started to cry and I dug his soother out of the bag but he just made it fly across the room, with his mouth. He held his hand hard over the place where they wanted to put the needle in, so in a joint effort, without talking to each other, T. grabbed his hand and held on to that, I put my cheek beside “Gubby’s”, cheek to cheek, and held my hand around his other cheek preventing him from looking and the technician managed to get the needle in, in record time. “Gubby” was overwhelmed, laughed and said “Thank You”, over and over again to the two technicians, who were trying to tape the needle to the arm and prepare everything. Then they asked, “where is the vial for the blood test?”. The surgical nurses had not sent vials with us, probably assuming that they had them upstairs, which they do not. So, while “Gubby” and I walked first to the loo, for the second time in minutes (the first time he just wanted to go, to prevent them from setting the needle), and then in to the gamma camera, T. had to walk down to surgery and ask for vials. “Gubby” laid down on the camera fine, was embedded in vacuum packaging and they started the camera. He got concerned again when they spoke of giving him a shot of radioactive fluid. Who can blame him, use that word and then come with a thing which looks like a needle at a quick glance, till one notices that there is not a needle at the tip, and of course he will get scared!
While the fluid travelled through his tiny body, the two kidneys lit up on the screen, full of the stuff, and he lay there watching “the Incredibles” on a TV screen beside the camera. He constantly needed re-assuring that everything was alright and I think he was uncomfortable in the bag. But he did well. He had to go out and pee in a mug after it was done, and then we went to finally do the blood test. I took him on to my lap this time, since he sits better there, and they just opened the valve. But the blood came so slowly that they had to press his arm, and he hated that. Finally they got a shot out, to draw out the blood via the needle’s valve, but once again they called it a shot and I could feel how he tensed up. So I had to tell him that it was not a shot with a needle, that it would not hurt. Finally he calmed down and we finally had a vial full of blood!
Before we headed out for the waiting room, they took the needle out and he was allowed to choose a car and a tiny treasure chest, from their cupboard of rewards, and then they gave him a little ice cream on a stick. He was delighted and a very happy little boy who told everyone that he is a big boy and that he had been a very good boy. After a while it was time to go in and have the last picture taken. But he had to go and pee again, so on and off and on again, on to the camera. It was a relief when it was all finished.
This Muslim family was sitting outside the door, waiting. They had arrived angrily and announced on their arrival that “we are here now”, like they were some kind of royalty who were entitled to get in before everyone else. Interesting to see in a way. I would have guessed that their own country does not offer free health care to all or at all. And that waiting is a universal thing, at all hospitals around the globe. Unless you are royalty, of course. This couple, or the husband, wanted to get in as soon as they arrived and got angry when he was told to sit down and wait. Tough luck. We all wait in Sweden. You never get in when you are told to be there. And the technicians told us that at Clinical Physiology, the times given for child patients are just “about” times, because you NEVER EVER know how much cooperation you will get when a child is concerned. He gave me an angry stare every time, we walked by them, like it was our fault that he had to wait! Like we were wasting his time…
“Gubby” skipped all the way down the corridor and out to the lifts. Unfortunately, I was so relieved that it was all over, that I forgot all about the hotdog and the ice cream I had promised him. I remembered when we got to the car. The parking, after an entire day at the hospital was hideous, so since we had to drive south, to fetch my new eye glasses, I decided to get him nice things down there instead. T. went all out and got him a French Hotdog. If only D. had known! I took advantage of a couple of minutes to myself and ran in to Flash and looked at their sale. He loved the hotdog and later on, he received his ice cream as well, soft ice cream with pear and raspberry sprinkles on top (candy like). So, his day has not been too bad. But I feel very tired emotionally. My smile is tired. I am out of encouraging words. I am glad that I could be the support he needed today and that T. was with us. I think it helped calm him down to have us both there. May he have had such a good experience that he will not remember last year’s trauma!