We saw Noah's gastro on Monday and talking about his long term plan for Noah. We were pleased that he agreed with us that a PEG is our next option. Percutaneous endoscopic gastrostomy is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall. The end result looks very confronting for the first 3-6 months as quite a large tube will be sticking out of Noah's tummy whilst it heals. The it will be replaced with a "button" which sounds a lot cuter that it is. The button will be flush to the Skin.
It does mean that we wont have to push the tube up his nose anymore. We hope that this and the fact that the tube isn't in this throat anymore might be the start of his sensory healing in his mouth. In short, we hope he will start to eat! We also hope that due to the fact that the NG tube isn't holding open his tummy anymore that it might help with the vomiting. Noah is still being sick 1-2 times a day, everyday. It's a terrible thing for him to go through and we feel so helpless everytime.
We also talked about a an anti-reflux surgery called a Nissen fundoplication, in which the top of the stomach is wrapped around itself to prevent reflux and vomiting. We have refused this surgery at this time
and hope we wont need it ever. We just want to see what effect the G tube has first.
Unfortunately Noah is booked in the week on his 2nd Birthday for the surgery. This will be his 2nd Birthday in hospital. We were so hoping for some sort of normality for his 2nd birthday. We are hoping for an earlier date through cancellation.
So now we are worrying about the operation itself, especially after Noah's last op left him in the high dependency unit for a week and in hospital for 2. Worrying about how Noah will take to the tube given his sensory processing disorder too. Another thing to work on with the OTs will be preparing him as much as we can.
So that's all folks, at least for this week!
Kat. I have enjoyed (if that is the right word...no probably more like been moved) by your writing over the past year.
ReplyDeleteI have worked with some very poorly little puppies and found it both exhilarating and draining.
But more than that, when I read your words, I hear your voice and am transported back 15 years to simpler times.
I never dreamed that life would take these twists and turns and we'd be writing across the globe about our children.
So who knows what the next fifteen years will bring.
I wish you and all yours the very very best and look forward to reading all about your trials, tribulations and successes.
Den
also meant to say, pegs and buttons rule. life changing for the dozen or so kids I know with them. There are a few problems with them but usually pretty minor compared with the ones they solve. i'm sure you'll get plenty of advice about the pros and cons dos and do nots, but if you want me to wrack my brains I will do.
ReplyDeleteYou're a soldier Kat! After seeing Oscar poorly with the usual toddler bugs and infections over the last few months and the worry even those small things brings, I can't imagine how you must feel with Noah's ongoing issues. I can definately agree with Mr Hill - its been a very moving experience being able to follow the journey you're all taking through the wonderful and terrifying world that is parenthood! Who'd a thunk it?? Us lot with kids! How did THAT happen??
ReplyDeleteI hope the next procedure is successful, I'll keep everything crossed for little Noah x
...and I have to say, he is your double on that blog pic! Mini Kat indeed!
ReplyDelete