What to expect? How long is the hospital stay? How long off school? What do we need to know, basically if you have any info or experience I am all ears!

And, as a parent, how do you know you are doing the right thing .

Ahhh huge hugs on that one!
As a parent you CAN'T know other than balance of probability that it's the right thing but when you are at the end of the road medically and quality of life sucks you have to try whatever you can that's left.

We went to Nicholas' appt with the surgeon to get a surgical opinion and came out with surgery booked - I was shell shocked at the speed of things. Thomas was a way slower process - around a year ruling things in and out but he was so clearly suffering it was as obvious as tits on a bull something had to change.
William was also really rapid but when you have a kid bringing up blood...again clayton's choice really.

Okay so - Thomas was just under 4 when he had his surgery but recovery was a bit different due to the gastrostomy as well.
Nicholas was 6.5 when he had his so probably closer to your little one in age.

It is major surgery - our surgeon said one night in hospital (going private) but in fact none of the 3 did it that fast. Nicholas and Thomas both had 2 nights and William had 3.
I think Roz has said that Gem had 3-4 - not sure and maybe she'll see this and answer too.

Care post op depends on the surgeon and their technique - my guys were all puree only for 6 weeks post op and that was seriously purees only - scrambled eggs would get stuck on the way down and hurt like hell 2-3 weeks post op. I know that Roz' daughter hasn't been so restricted so depends on the surgeon.

Stitches don't come out until 5-7 days post op so I personally wouldn't consider school until after that. We were told no swinging off monkey bars etc for 4-6 weeks as it pulls on the site so if you can't be sure she won't do that then you need to consider how to manage that. W was allowed back on the tramp after 4 weeks but no major flips for about 6 weeks. Roz said her surgeon doesn't like tramps at all.

Nicholas is a hot wire so I thought I'd have a wiped out kid to bring home but after his first day at home I was having to use the dvds I'd hired to entertain him to actually MAKE him rest. William was pretty tired for a good week but he had a fair amount of re-arranging inside to do.
So I'd say def a week and possibly 2 off school. Nicholas had 8 weeks off but that was because of his puree restriction and the school refusing to allow him to put smoothies etc in the fridge and it was Oct and I didn't want him getting sick from over heated milk based drinks. Then his weight plummeted and so I kept him home until I got that stable - it was part way into Nov at that stage so school wasn't amounting to much by then. He got back for the last 2 weeks of school - and then we moved to homeschooling anyway.

With William we were homeschooling and we'd actually planned to finish school in the first week of December - his op was 2 December so we just finished a week earlier than planned.

Any other questions and I'm happy to share!
Best thing to get me through the other two's recovery (learning on the job with Nicholas) was to get a whizz stick to puree up our ordinary foods for them to eat. Much more calorie dense than baby food which is what they all used for the first week at least. Whizz stick was my best friend - you can turn weetbix to dust and mixed with pureed fruit and milk you can turn it into a really smooth, sloppy paste which is easy to get down and helps fill them up.
Their tummy capacity is reduced for a while and they won't eat anywhere as much - I wound up offering food around 6 times a day with N and W.

Hope that helps a little - when's the op booked for?

Hugs we are getting it done for miss 15 months in November, it wasnt hard for us as shes still little at just over 7kg and weight gains are varied and after her first loss last month after being sick and talking to paed we are going ahead.I will be watching this with interest as well.Go with your gut, i still think that as well,im sad at the fact that its come to this and we are putting her thou the surgery, and was a bit teary. I have to try and be postive and think this is whats best for her ,my head was in the sand for ages i knew it was coming but didnt want to face it i still think im a bit the same and it wont hit till we are there getting it done.Quick question we are from southland have to go to Chch do you think stay could be longer ?

Thanks Eleanor - knew you would have a bit to say on the subject . I can't believe the school not allowing smoothies in the fridge!!! Good point re: monkey bars etc as Katey loves the playground. Surgery isn't booked yet but we are seeing the surgeon on Monday and I dare say it will be booked after that. We have medical insurance, so hopefully it won't be too far away. Katey is complaining loads about a sore tummy now (not chest area, stomach area) which I am thinking might be related to her Dr Reddy's now???

Rosemichelle - nice to see someone else with 3 girls as well . I would say they wouldn't send you home until they were completely certain all was well. We live an hour out of Auckland and they tend to be a bit more conserative with the kids when they have had surgery. Hope all goes well for your little one in Nov.

Hi Madam Chatsalot
My DD had her first NF when she was 7, it was done privately in Christchurch and she went in on the day of the op and had 2 nights in hospital. Her and I shared a room all my food was provided for me and I took in most of her food due to allergies ie lite licks ice cream and jelly and took in one frozen home made shepherd pie that she ate some of on the post op. I used a magic bullet to blend her food for a few weeks after the op so she ate almost the same as use but blended. The op was on a Friday we were dicharged and Sunday afternoon and she had the next week of school and then 1/2 days the following week. No over active play for 6 weeks, ??off tramp for a bit longer and be sure that they do not bounce on tramp with a full tummy post op even after a long time as this can put extra stress on NF.
Good luck
Vicky Lee

Good luck for Monday,will be thinking of you. 3 girls rock lol i was so happy when we found out miss 15 months was another girl dreading teenage years mind you.

Oh HUGS hun sorry to see that you have having to go down this road will be thinking of you on Monday and hoping for a positive outcome.

Well, saw the surgeon again today and fundo is the last option we have. So we will take it. Hopefully within the month.

Hugs hun what a huge day you have had.XXX

Oh hugs - deep breathe and pour yourself a glass of wine!

Do feel free to PM me about anything if you want.

Hugs,a lot to process,am thinking of you.

Madam Chats. Good luck with the op - I hope it all goes well. It is a big decision to make. I know I second-guessed myself right up til the day of my DS's op.

DS had the op on a Friday morning (took about 2 hours) & we went home from hospital on the Sunday afternoon. He wasn't officially discharged at that time though so we had the option of coming straight back into the ward if we had any concerns etc. DS's op was done laproscopically (?sp) so no external stitches had to be removed post-op & I think recovery is faster too. DS goes to home-based care & he went back to his carer 2 weeks after his op but just for a few hours at a time to start with as he got tired very quickly. I think after about 4 or 5 weeks he was back to normal hours & coping ok. Obviously he was alot younger than your DD when he had his op so she might bounce back a bit quicker.

Diet wise we just kept DS on a fairly liquid diet for about 3 -5 weeks - lots of smoothies & soup. We just slowly re-introduced firmer foods over the next few months. Raw fruit (apples, pears etc)& veg were the last things he could cope with but he now doesn't have any problems with those foods except for raw carrots, they still won't go down. He eats really well now but is a very slow eater.

DS still can't burp but that doesn't seem to cause him any pain - he's very good at expelling air out the other end My biggest worry was, & still is, around his ability (or not) to vomit. Advice from our paed surgeon was that if he tries hard enough he will be able to be sick but that will also mean that he will start refluxing again so I'm nervous every time a tummy bug does the rounds but so far so good.

Anyway, good luck with the op & best wishes for a speedy recovery for your DD.

Rosemichelle - DS had his op at ChCh Public so if you have any questions about that hosp feel free to PM me.


Cheers,
Bridget

Thanks heaps for that post 2Ls. Very helpful.

Katey was total shite after ther tonsilectomy, so I am not holding out much hope for a decent recovery from this one either.

We have an operation date - 30th August (I know, so soon!) TBC.

The surgeon has booked us into a private hospital for 3 nights, with an extra night up our sleeve if she needs before the weekend (if not well enough to go home them then we have to transfer to Starship).

Thanks too for that 2Ls, i will def PM you if i have any questions, like you i am having doubts all the time, and because its still a wee ways away i think im still in denial. It wont hit until we are in the car traveling the long trip up. Huge huge hugs Madam , its not long at all please keep us posted, youare probably going though the same thoughts as me are we doing the right thing and oh its not that bad etc etc.

Yes, you do second guess yourself ... it's hard being a mum sometimes.

Katey has been to the dental nurse today as she had sore back teeth. Needs full restorations (which means what? Fillings I guess?) on several of her molars. Gee, thanks for that reflux !!!

Oh yes - that trip to the hosp in the car. Everything in you screams turn around, how can you deliberately put the kid in harm's way etc.

But it seriously has transformed life for my boys - even for T the 15 or so months before this latest mess started has been so much better and he's really really blossomed.

Interesting you've been told if they vomit then the reflux will come back. Just goes to show how diff the surgeons, the techniques etc are - our's is surprised N still can't vomit nearly 3 yrs after. He's also said if he needs to he'll be able to but didn't indicate it would bring the reflux back. In fact he's always said all the way along, that some minimal reflux is normal and he wouldn't be able to stop it totally - or else you also wouldn't be able to eat - but has done it to reduce it to the normal levels so things aren't always being bathed in acid.

N has very very occasionally mentioned tasting something but usually straight after drinking and possibly some hasn't gone past the wrap yet, or it got washed up on a burp.
T commented a few months post op about being able to taste pukey burps and in fact commented to the surgeon that he could. Surgeon looked alarmed but on discovering T also had a cold and was very congested, reminded us that some is normal and esp when all gunked up and bloated with a cold - as kids get.

All the kids could/can burp after although it took some time - a few months at least. I really enjoyed the peace as N could burp the alphabet beforehand and has not regained that spectacular skill! T didn't really until this recent issue arose but that could also be because we have the gastrostomy tube and when he fills with air he asks to be vented and so hasn't had to learn to deal with burping.
Thinking about it - it could explain W and N's obnoxious farts if they have to think and work to burp these days...but could be just a boy thing!

Oh on food - better start thinking about lunch alternatives, esp for when she goes back to school as bread was one of the last things my boys could manage because of the way it forms a ball as you swallow it. Toast they could do earlier but that's not the best for school.

Katey has chicken pox ... surgery delayed.

Ugh...talk about timing!
Welcome to the roller coaster!

Hope she gets better soon,not the best of timing thou.