Here some suggested organisations that offer expert advice on SN.
Permanent catheter(11 Posts)
Help. Does anyone on here have experience of a child with a long term catheter? Mitochondrial disease has caused my stepdaughter's bladder and bowel to stop functioning. She will have a catheter inserted in her tummy, hopefully with a button and a tube emptier rather than a bag, as she would struggle to cope with a bag. We also will have to do daily bowel washouts. Anyone know how this sort of thing goes on a daily basis? How long does care take and how easy it to to keep infection out? We're feeling very daunted. SD has very little sight - will she be able to use the emptying tube herself, anyone think? She manages to insert meds into her gastrostomy herself via a syringe. A bit of hand holding needed really.
Hi Stiffy. I don't know much about colostomy stuff, but I know of a foundation that may be able to advise you further. here Birmingham Children's Hospital have a Mitochondria unit.
Hi Sally, thanks. We're all connected to the mitochondrial experts already so we know all about that bit-it's not a new diagnosis. It's just the catheter that's new. But thanks for answering.
I only meant that there may be some parents connected with that foundation that deal with the catheter, who could give you the wisdom of their experience. The other place if you get no joy here is, Facebook. I am a member of a variety of groups relating to the issues that my DD has. My DD had a Micky button, but we were free of that by the time she was 7. Sorry that your SDD is going though all of this. It must be very difficult.
Oh I see what you mean, sorry. We are most plugged into CLIMB so they may be worth a go. But our understanding is that this isn't too common with mito and more usual with nerve damage and conditions like spina bifida. Mito is such a wildly varying thing and our version is very rare so we tend to be on our own with things.
That is so difficult when you have an unusual case of a condition. There are lots of support groups, but you have to try a lot to see which works best for you!
To be honest, none really. CLIMB are lovely, and were very supportive on DLA etc. The Lilly Foundation very kindly gave us a weekend at Centreparcs. But there are only four people in the world who have ever had this variant of her condition, two are dead, one is in a journal article and one is her. So no support groups really do much. So we just have to manage each symptom. And now we need to know about life with a catheter!
My daughter has mitochondrial disease as well, so I can relate.
If your daughter can manage her gastrostomy, she should be able to manage the urostomy too, once it has healed. For us, they started with a "permanent" longer catheter to allow things to heal, then once the initial healing had taken place it was switched out for a skin level tube. For the bowel washouts, are you doing them from below, or does she have a MACE/Malone/appendicostomy?
My little one is in total intestinal failure and has been TPN dependent for about 4 years now. Like your family, she is exceptionally "unique" and we deal with things as they present themselves... If you'd like to connect individually, feel free to message me.
Thanks, BeeMom. I will DM you when I can.
As far as I understand it, they plan to use bags at first, but hope to move her to a button relatively soon. She has partial sight and serious cognitive impairment so although she can administer meds through a syringe most of the time, she wouldn't remember to do them without prompting or be able to cope with a feed pump. I think her metabolic consultant felt she would be unable to cope with emptying the bags regularly and we agree - she doesn't have a full time carer to support her. Is the skin level tube a button?
I'm a beginner on the bowels. She has no sort of device at present as this only began two months ago, so I assume it would be the most basic version - would be the below method? Is it messy? How old is your daughter? DSD is 13 so has some sense of bodily privacy, although not what most 13 year olds would have - ie she'll walk around naked in front of people and leave the loo door open. I'm not sure how she'll react to this sort of thing.
The skin level tube is not really a tube at all - What Bee has is a Mitrofanoff so there is no actual "tube" in place, just a continent stoma that is catheterized several times a day. The key to being able to care for it herself is making sure that the procedure is done as cleanly as possible - the bladder (as I am sure you know) is a great place to set up a bacteria farm.
As for bowel care - if your daughter is incontinent, enemas can be very messy. There are a number of medications that can be used (stool softeners, laxatives, things like mag citrate...) to help manage the bowels, but once you get to enemas, it is not ideal to use them long term. Instead, the appendix (if it hasn't already been used for the Mitrofanoff) can be used for a Malone Procedure or a Chait cecostomy can be considered.
Whether you pursue these has a lot to do with how you see your daughter's future. Bee has deteriorated a lot over the last few years, and we are limiting interventions for her (she was referred for hospice support this year). She turns 7 on Tuesday, so there is a big gap between our girls. Bee is also visually impaired, has gross and fine motor issues and a cognitive delay.
I look forward to getting to know you better.
Thanks. I will look all that up!
We are in a similar position. I think the hospital realises it too. Major surgery is really not appropriate given the severe multiple symptoms we are managing, and we also have (fantastic) hospice support. So sorry you are going through this. Speak to you soon.
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