Doctor phone call # 1

Yesterday, as I was about to sit down and eat dinner, 17:25, to leave for “Cookie’s” dance at 17:30, I got a phone call from “Sparky’s” surgeon. She told me the results from the Mag 3, that “Sparky” went on, last Monday. His right kidney function is still only 13%. The team could only see  very thin tissue left on the kidney, which she explained is thanks to all the backed up urine. And then she told me that the flow through the kidney is fine till it gets to the “bäcken” of the kidney. Google translate says renal pelvis, which sounds very odd to me. Anyway, there it slows down and even more so leaving that in to the ureter. What was supposed to have been fixed when he was two months old. Now she has to decide whether to operate in a tube in to the kidney via the back, so that they can x-ray it properly. She wanted to know last night what T. and I think about it. I told her that I am petrified. That I don’t know how to make him not pull the tube out. That even if I try my best to keep my eye on him, every minute, there are ways for him to be naughty. And I can’t keep my eye on him after he’s gone to bed and before I wake up. Sometimes I go up at 04:00 to go to the loo, and believe it or not, but I often hear him sitting chatting with himself in bed at that hour! What says that he would not just pull out the tube then? The surgeon is not even certain that she wants to start messing with a healthy little boy. She put the cards on the table: She can not give any guarantees at all that this tube thing and a new surgery would be in his best interest. It might be an entire waste of time, on an otherwise healthy boy. And she is hesitant to start all this. Not knowing what the outcome will be. And are we really up for it? And what if she tells us that she wants to move on to surgery, are we prepared for that? To be honest, I think this is too big of a decision for us and I told her that. That we are forced to trust her judgement since we don’t have the knowledge. On the 15th we are to meet her at 09:00 and go through everything, since T. just gets to hear my shortened resumés, all the time. This way we hear it all together and can make a decision.

I woke this morning at 03:45 and went to the loo.I couldn’t fall asleep after this.  It sounds more and more insane to start all this. Why mess with him when he is doing so well with everything else? He hardly ever has accidents in his knickets. He goes to the loo when he needs to go. He sits down, just the way he is supposed to. Yes, he puts a nappy on when he needs to poop and goes in to do his business in the wash room, but he acually has started sitting down on the loo now and then to do it as well, telling us that he needs to poop. And the pre-school teacher in charge, has told me that he is like another boy, after Christmas. Harmonic and more receptive to all sorts of things. He can sit and listen to a story. He talks more and more. I don’t want him to have his world turned upside down NOW when everything is becoming as it should be. I really don’t want him to go through pain, if it is all in vain. To be honest I don’t feel like his kidney has a chance. This just doesn’t feel right. I don’t want him to get traumatized for life. Or worse, die on the operating table. I love this little boy so much and know how terrible it was for him last time. For months on end he didn’t trust anyone but me. I was the only one he wanted to be held by and for the first year of his life, he didn’t want anyone to comfort him, except me. His father was persona non grata. If nothing else, I think that what his surgeon proposes, will have deep psychological impact, and not in a positive way.

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