Now, if you are squeamish.. better not see/read this.
This is my worry/fear. What can I do when we get too old or die and no one is there to care for Walter.
Its easy if things were smooth and as simple as caring for a normal child, but Walter has Downs Syndrome, which is not much of an issue .. and he also has Hirschsprung's disease, which has brought forward some complication. My simple explanation to many persons is that he doesn't have ganglion cells to help to push his poo out, in fact he has no control at all, which results in his poo flowing out as and when it likes.
Hence the stoma bag. For a few years.
He has been using this for some time. Its good in the sense that it collects the poo and just need to clean a few times in a day, but we could see the wall to his stomach was not doing too well. So we closed it in an operation with the hope that as poo flows from his anus it can then be slowly controlled by Walter. So Walter has to wear diapers. That's all nice and good.
Instead, it seems that Walter cannot control his poo. Partly because he doesn't eat any veges if he has a say in the matter and partly we did not really teach him to do so. I know my wife is tired of constantly cleaning up Walter and cleaning and maintaining the house while also looking after Vina but she doesn't want a maid.. but that's another story. And we noticed that his skin on his bum and the inside of his thighs turning red and slowly bleeding, especially between the legs. This pic shows a very good time (which is rare), and this is still bad, coz u cant see between his legs which is a huge gauge into the skin that bleeds.
Walter has to be washed each time he poos, but he screams and hates it. Why? Because it hurts. Imagine having a shallow but wide cut and you have to wash it 6 to 9 times a day (now reduce to around 5 times with new medication). I hate it too, as I usually bathe him when I get back and before he falls asleep, and it hurts to see him scream and cry though sometimes I also get so very tired with it all. Its also very emotionally draining. Very.
So its a stressful situation, everyday. Its difficult for my wife to do even simple things like going out, and only a few friends really understand and can sit through with us as we clean and put medication for Walter. We are trying new medication and a new approach, but its costly and time consuming. So far the top part of his bum looks better but there is still the deep gauge in his inner thighs. He still fights to shower and to put on the new medicine.
Our choice, keep on going with the hope he can control his poo and this new method/medication will help or to go back to stoma bags.. which has its own set of problems.
Either way - who is going to care for Walter as he cannot do this by himself. Do I wish to impose him on my daughter? I don't. So how?
This is my worry/fear. What can I do when we get too old or die and no one is there to care for Walter.
Its easy if things were smooth and as simple as caring for a normal child, but Walter has Downs Syndrome, which is not much of an issue .. and he also has Hirschsprung's disease, which has brought forward some complication. My simple explanation to many persons is that he doesn't have ganglion cells to help to push his poo out, in fact he has no control at all, which results in his poo flowing out as and when it likes.
Hence the stoma bag. For a few years.
Instead, it seems that Walter cannot control his poo. Partly because he doesn't eat any veges if he has a say in the matter and partly we did not really teach him to do so. I know my wife is tired of constantly cleaning up Walter and cleaning and maintaining the house while also looking after Vina but she doesn't want a maid.. but that's another story. And we noticed that his skin on his bum and the inside of his thighs turning red and slowly bleeding, especially between the legs. This pic shows a very good time (which is rare), and this is still bad, coz u cant see between his legs which is a huge gauge into the skin that bleeds.
So its a stressful situation, everyday. Its difficult for my wife to do even simple things like going out, and only a few friends really understand and can sit through with us as we clean and put medication for Walter. We are trying new medication and a new approach, but its costly and time consuming. So far the top part of his bum looks better but there is still the deep gauge in his inner thighs. He still fights to shower and to put on the new medicine.
Our choice, keep on going with the hope he can control his poo and this new method/medication will help or to go back to stoma bags.. which has its own set of problems.
Either way - who is going to care for Walter as he cannot do this by himself. Do I wish to impose him on my daughter? I don't. So how?
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