More updating from last week when my bleeding was too bad, for comfort… Friday, at 9:00, I had a meeting with “Sparky’s” surgeon. Let’s call her CCK, since those are her initials, having a double surname. Everyone, but Daniel, had a day off school Friday, since all teachers were on courses. Fitted my schedule just fine or perfect I should say. T. even had taken some hours off from work to come along, but I don’t know for what reasons since he contributed nothing and didn’t bother opening his mouth. At least he did not sit and sleep like he usually does at important meetings!
It was time to discuss, “Sparky’s” kidney’s future and his future with it, of course. Weeks ago, CCK phoned, after a year of waiting, to say that she doesn’t know what to do with his kidney. Her first plan was to do a Mag 3, which of course readers of this blog knows, is contrast fluid in your veins and being filmed on a gamma camera. Takes all day. Depending on what the Mag 3 was to say, the next step was putting a tube in his back, in to his kidney, and after a week of draining, x-ray it. Depending on what that said, she might try a second time to fix things, surgically. We went for the Mag 3. And it was terrible. The surgical department put EMLA anaesthesia cream on four spots, but ten minutes later, it had basically come out on the sides of the thin film they put over the cream spots. I tried to keep his mind elsewhere but he hated the wet clothes. And then came the setting of the needle. He whined which he never does otherwise! So he was not numb at all but could feel it! And then he looks at the one nurse holding his arm still and said “I am a baby!”. He looked at me and had BIG crocodile tears on his cheeks. The two nurses said “no, you’re not a baby, you’re a brave little boy!” but I KNEW what he meant. He was regressing. He was a baby because you can’t or should not hurt a baby and they were hurting him. For the rest of the day, I had to let him keep his soother, because he refused to let it go and I wanted him to cooperate on the camera, keeping the needle in and so forth.
“I am a baby!”. Those words have echoed with me and the tears on his cheeks. His pre-school teacher has told me that he has been like a changed little boy since Christmas. He can sit down and listen, not run around, and he concentrates on things, he talks more and more. What would weeks at the hospital do? He would learn distrust! That people hurt him. That I let them hurt him. He would no doubt go backwards in his development. I have felt worried. Then CCK phoned three weeks ago and said that we need to meet and talk through what to do. She wanted to lay all cards on the table, she said, and it was up to us as parents to make the decision of surgery or not.
So, we sat down with her Friday, finally. He has 13% function in his right kidney. It’s a very big kidney filled with urine, stretched out to max. Urine goes through slower than before. She explained her previous surgery. That she has never forgot him of all surgeries, because it’s been her most difficult one. His kidney having the extra blood vessel so that she could not do what one always does. And the ureter being so narrow that she could not put in a tube through it, like they always do, to help the urine’s transport to the bladder. Then of course there was the overdosing of paracetamol by the staff and the infection, that we don’t know what they did to the kidney. Her question now was: “Do I start messing with an otherwise healthy little boy? For what purpose? There is no guarantee that I can fix anything!” She might just mess things up instead and put him in danger.
At this point I explained to her what my fears are. Him coming home with an uncomfortable tube in his back running down to a heavy bag, that quickly fills up with urine. He having to walk around with the tube and the bag in a little cross over body bag, but it being in the way when he plays, sleeps, climbs and HE WILL TRY TO RIP IT OUT! I know my son. I told her, that had he been a little calm girl like “Cookie”, then I could have explained to him, “This is dangerous. You must not touch this, you must leave it in. I you rip it out, you are in extreme danger!”. But he is not. I explained how the psychologist and speech therapist does not know how deep his language goes. The word dangerous means nothing, in theory, to him. You can’t explain deep things to him. And even if I try my best, I can not keep an eye on him 24 hours a day… I will sleep badly as it is, worrying, but no-one can stay awake for 24 hours, day after day, for weeks, and also take care of 5 other children. I explained “Kitty’s” ADHD, how “Boo” has problems at school and that the teacher asks me to stand and talk to her for 30 minutes, 30 minutes when “Sparky” could pull a tube out of his back. He could pull it out while I drive for that matter. I told her about my loo visits at 4:00 in the morning, hearing him talking in bed, and that he could rip it out then! She understood what I was talking about and was concerned. She said that IF he rips the tube out, the danger of infection is enormous and that an infection can spread to the healthy kidney and then he looses them both! And that IF she sees that she can do surgery, then he would have to keep the tube till surgery date which can mean a LONG time since nothing happens quickly in this country. She was also wondering if he would really stay still in a hospital bed and I told her, not very likely.
Finally she said that she doesn’t feel right about messing with him. She always opts for surgery because she is a surgeon and loves to cut and fix things, but she said in our case we really have to look at the entire picture and she can’t guarantee any progress or success at all, so it feels wrong to mess with him at this point. She felt good about her decision, she said, that it felt right, and that we now have to keep close eye on what happens to the sick kidney. It might stay at 13%, it might go down further, but we have to take everything as it comes. To tell the truth, this is what the Holy Ghost has been telling me ever since he said those words, “I am a baby”, and since she said “IS IT RIGHT TO MESS WITH AN OTHERWISE HEALTHY BOY?”. It felt odd, that someone actually listened to me, but I told her that I did not want my son to be a test rabbit, that I wanted better guarantees, if he was going to go through this major thing and perhaps regress both in speech and development, thanks to the trauma. So, as for now, no surgery. I know in my heart that his kidney probably will die and will have to be removed, but I hope that this will be far in to the future.
I felt happy when I walked out. I went and drooled over Thomas Sabo rings, that I would have loved to have received on Valentine’s Day, and then I went and bought the cutest bunny for “Sparky”. Because I love him to the moon and back! They have the TV version of the books on TV now. Really cute! “Sparky” doesn’t watch it, except for the beginning when they sing the theme song. I caught him singing it weeks ago, and now I have to sneek on him, to hear it. He doesn’t want me to listen! But you hear a little angel singing in front of the TV “guess how much, guess how much, guess how much I love you?”. When he is done, and the program starts, he turns to me and I give him the biggest kiss and tell him how beautiful he sang. He knows I am listening in other words, but he doesn’t want to see me when he sings. When finished though, he wants the kiss and the praise! Our routine then is to turn off the TV and leave for pre-school. This Friday I took a tough decision, because I love him so much, and gave him the extra cute bunny to tell him so. It is super soft and with long fluffy ears. I think he made the connection?