Major Op Needed, Meeting Surgeons Tomorrow & Stressing Out

[chorltonandthewheelies]

I've not posted much recently as I've just had a new dd and I've been pretty busy [hsmile]

My Ds 7 has sn and a lot of medical issues, an undiagnosed condition which has been likened to Prader-Willi but with a lot of other complications, however his genetics have shown nothing.

He has been having ongoing bowel issues and is doubly incontinent. Basically after a lot of trials of medication the surgeons decided in July that it looked likely his colon does not work and is distended. They explained that the worry is that it will twist which would obviously be potentially fatal.

We are going tomorrow to give the go ahead for surgery which will result in him losing 80% of his colon and a long stay in hospital. He does not react well to anasthetic and after previous surgeries has ended up in ICU for a while, he is already oxygen dependent so his lungs are weak.

I am so stressed out about the idea of more surgery. Not least because I have always stayed with him before while my husband looked after our older two Dds, but now we have a baby to consider too. I know we cant keep postponing the surgery due to the risk factor but am so stressed out about the potential risks of surgery and the aftermath even if all goes ok. [hsad]

Venting has made me feel a bit better, dont have any family to lean on and hubby and I are trying not to have a stressful atmosphere in the house for the sake of the kids but I am worried.

Can't give you any advice, but will be thinking of you. I hope everything goes ok.

hope everything goes ok, will be thinking of you

Thanks everyone, sorry for the moan, just needed to let it out. Will let you know what happens tomorrow.

Hi there! Congrats on your new baby, no wonder you have been busy!
I emailed you way back when my DS2 was diagnosed with PWS, he is 18 months now, time flies.
I will be thinking of you tomorrow. All I can liken it to is when my DH had a big op and had part of his stomach and intestine removed. It is amazing how the body can recover from these ops, I really hope your DS bounces back quickly x

Congratulations on the new baby :)

Good luck for tomorrow xx

Wishing you and ds all the best for tomorrow. Must be very anxious for you, but he will be looked after every single step of the way. Good luck x

Best wishes

I'm so sorry I have to hurry, but my son was oxygen dependant when he was born. He also had a few major ops in the 1st few year including an 8 hour open heart surgery. It is hard to see them go through all this as well as dealing with the emotions you go through. I kind of went on auto pilot and dreamed my way through it all. Sorry I'm not much help, but good luck and congratulations x

Positive vibrations coming over for Monday.

chorlton - thinking of you and your family. This has got to be difficult for you. I have a bowel problem - diverticular disease - and a couple years ago it was really bad, they thought there was a perforation and perhaps would be required to undergo major surgery to repair it. Thankfully, two weeks in the hospital on IVs for food and lots of antibiotics and other meds later, my condition healed enough that I could avoid the surgery, although that doesn't rule out that I could end up having it in future if further problems develop as this disease is prone to them.

I remember the panic and worry about having the surgery myself as an adult, so I can imagine the fear over having your child go through it, especially with potential complications, must be overwhelming.

Please let us know how things are going. Best wishes for you.

Just wanted to pop back and update after all your kind posts [hsmile]. Hi Helenbach I remember you hope all is good with you, cant believe your little on is 18months already We had a very positive meeting with the surgeons and all options were discussed again. Prior to carrying out the surgery they want to have a six week trial of a pump enema system to see if this helps. They are naturally very concerned about doing surgery on him due to his health problems but cant risk waiting too long as they told us they can see from the scope they did that his bowel has been twisting, luckily so far it has untwisted itself but they are obviously concerned about what will happen if it stays twisted.

We are getting training on the pump next week. Then its back at the start of December to make a final decision. I will probably post about the pump system to see if anyone has any experience. The problem we will have is him having no mobility and not being able to weight bear makes using the pump system difficult, as he cant transfer to the toilet. It is also a big time commitment - about an hour a day they said but thats still more appealing to us than surgery and the aftermath, although we are prepared to get the surgery done if it doesnt work.

thanks for the update hope you can get sorted with the pump.

Thanks for the update. Glad everything is more positive for you :)

Really hope this works out for you, must be a relief there's no need for the big op immediately. Take care x