Everyone is back in school now after a two and a half week holiday. And as usual it is tough to get back in to the routines after not having any routines at all. Yesterday I sat by the kitchen table and tried to pay our car insurance bill over the internet and it just would not go through. I tried over and over again without any success and I grew more and more frustrated. Only the three youngest were home but they were all in the living room watching a film on DVD. Then the phone rang and I answered without really paying attention to anything but the bank site on my computer, not checking the caller’s number on the phone. So I almost fainted when she introduced herself as the surgeon that operated on “Sparky” in 2008. She said that she has never been able to forget him since he was rather special in many ways. One of the ways was of course that she could not do the standard operation, thanks to his extra blood vessel that could not be taken away.
I have waited for this phone call for an entire year and so has his doctor at medicine. She phoned me in November and told me how frustrated she was with surgery, that they had not let her know anything yet. His kidney just keeps growing and working slower and slower, and no answers as to what to do with it. His kidney doctor at medicine wants to know if the surgeon can do something surgically. Again. There of course was the infection after the last surgery, that ruined the kidney according to the surgeon. That of course can not be put right.
Now the surgeon wanted to know if he is a healthy little boy? Any infections? Strange fevers? Problems with toileting? I told her the entire story, how I held him home from starting pre-school because they just take off the nappy as the child starts and then the child is supposed to deal with peed and pooped down clothes themselves, since it is Montessori. I told her about my older children and how I often arrived in winter to discover them wearing rain clothes, snowsuit under these and the snowsuit being soaked in pee. And then having run around like that out in the cold for perhaps hours. She agreed with me that it is not an optimal thing for “Sparky” to go through. So I told her that I held him home 6 extra months but then I started him after I received a promise from the pre-school that he could keep his nappy on. But after our visit to the urology department in July, we were told by the doctor there, that the best thing would be if he could start peeing in a loo and doing so, sitting down, since the bladder doesn’t empty properly otherwise. I thought he would not cooperate at all but he has. At first only at pre-school but then here at home as well. But I had to tell the surgeon what he does when he needs to poop. That he puts on a nappy himself and goes in to the laundry room to do his business before informing me that he has pooped. She laughed and thought he sounds like a very determined young man. I’d say!
What is her decision? Well, first she wants a new Mag 3 done. It means them numbing him in different spots which he hates. Then they set a needle in one of those places, where they can find a vein. And while he is on a gamma camera, they pump in contrast fluid. Both his kidneys light up as candles and after 20 minutes it is over. Then I usually see what they see, his left kidney is dark but the right kidney is still as lit up and now his bladder is also lit up. Then starts the wait, for him to pee and they take a photo with the same camera. While he is on the camera, he has to lay in a vacuum packed bag and he hates it now when he is this big. As a baby he usually went to sleep but now we have to sing to him, entertain him in all manners so he will not try to get out and up.
Second thing she wants to do, if the Mag 3 points at a deterioration, perhaps even if it doesn’t since it has only 13 % function, is to place a tube in to his kidney. To let the kidney rest and to be able to see if from another angle somehow. He has to go under to insert the tube. And it will come out in his back and be attached to a bag. Yes, thank you. I know what that means. Going to the hospital every three days since they have to change the platform that the tube rests on to not slip out of the back. When he was two months it was so much easier than it will be now. He was laying still. He couldn’t pull the tube out. I pulled the tube through the trouser leg so it came out by his foot and there was the bag. When I lifted him up, I had to lift him and the bag since otherwise the tube could come out if the heavy bag, full of pee, remained hanging. She asked me if I am up to this? What could I answer? I am worried sick. It feels like a very heavy burden. I know how stressful it will be. But of course I must cope since it will be for his best. Anything for him. But I told her of my fears. That he is very delayed in his speech and that he might not understand when I explain to him that he is not allowed to pull it out. I can see him pulling it out because he doesn’t want a weird thing sticking out from his back, that makes life uncomfortable. It will be a full time task to keep my eyes on him and the tube+bag. She said that it happens that children pull them out and then there is nothing to do about it. But she said if he can keep it in for at least a week, it would be good since then they will do a new Mag 3 then. If they could have their way, they would like him to keep it in for 3-4 weeks. I just know one thing, when this happens, I am going to live a nightmare. Suddenly I feel like all air has gone out of me.
That is about when “Kitty” and “Boo” started screaming and fighting, in the living room. I tried to hush them down but no, they just got worse and worse. Screaming like pigs and hitting each other. I did not get to ask her what time frame we are looking at. When all things will happen. When he has had the tube, she will decide if she is going to try to fix the kidney once again. Pressure on it is just going up and up the bigger he gets, and older. But she doesn’t even know if she CAN do anything. As long as he doesn’t get repeated infections in it, it is not hurting the healthy kidney. I feel worried sick and it was not fun to have to cut the conversation short because of my two Rocky Balboas in the living room!