Hi all,

We just found out this morning that Lucy needs the Nissen Fundlopication op for reflux problems.

Shes just had the PH Study which showed that Lucy had 61 reflux episodes in 24 hours.  Apparently this is alot and needs the op.  We dont know alot about it so if any of your children have had this op if you could tell us what its like and what we should expect, id be grateful!  Thanks

Hi Teresa

Our daughter Kaytie had a nissen fundo when she was 9 months old as a result of too many strictures. We were very hesitant as I didn’t want her to go through another operation and I will tell you it is major surgery, but as long as they keep the pain under control, they should be right after a day or so (Kaytie was sitting up in her cot the following afternoon!)
It was however, it was the best thing we ever did. She has no more strictures from the reflux and is eating well. She does have a small stomach now though so she gets full quite easily. They told us she wouldn’t be able to burp, but she can so that is good.
If your TOF baby is refluxing that much she must be in a lot of pain? is she unsettled?
If you have any questions don’t hesitate to ask

Laura

Hi Laura

Thanks for replying.  Yeah Lucy is unsettled quite alot of the time, have three children and she is so compltely different.  Mostly night times are the worse.  She doesnt sleep through.  She has been eating ok until recently and now we know why!  Like you say it must be soooo uncomfortable for her.  Acid indegestion is bad enough but to get it 61 times in a day, she is so brave bless her!

I am a bit worried as to what it’l be like after the op as she is almost 2 and it will be hard for her to understand that she cant just get up and run around and eat anything thats in sight! How long did Kaytie have to stay in for?

How did Kaytie feed after? did she have to have a tube?? If so how long was it for??  Did Kaytie have to go to the intensive care unit??

Hope you dont mind all the questions, im sure you’ll understand im bit nervous of Lucy going in again.  Its a bit more that the dialitations!

Teresax

Hi Teresa,
my son needs to have the ph study done soon also as it keeps him awake at night, the losec doesn’t seem to completly help him and i end up giving him gaviscon as well. they will put the tube in when he gets an endoscopy done. the gastroenoligist mentioned the fundo operation but we will have him monitored first.there are some postings on the forum from parents of children that have had it done.
keep in touch xxx julie

Hi Teresa

It is a very nerve-racking thing you are going through so ask away

Kaytie had a nasogastric tube before the procedure already and her reflux (and strictures) were so bad that she wasn’t feeding on her own at all to begin with. She had her fundo in spetember last year and by christmas I asked for her to be admitted again to pull her tube out and monitor her until she ate on her own (she hasn’t had the tube back since!). But if Lucy is eating now I can’t see any problems with her getting back on food again, if anything she will probably be more comfortable without the reflux?
Kaytie didn’t go to ICU as she had severe traceomalacia months prior and wasn’t able to come off the ventilator so they didn’t want to prolong her time on it again, but generally at the hospital she was at they do put them in ICU for a day and she was in hospital for a total of a week (that’s a good question to ask your surgeon). I was very surprised with how well and quickly she recovered.

I have a blog that I wrote about it at the time you are most welcome to read. The link is http://kaytiesstory.blogspot.com/2006_09_01_archive.html
But every child is different and because Lucy is older it might be a tad easier to explain things to her?
If you have any more questions please ask away

Laura

Thanks Laura, thats helped us to understand a bit better.  Also had a call from Helen today advising that they could do the proceedure via key hole surgery, which is alot less invaisive and alot quicker recovery.  Helens advised to speak to Lucy’s surgeon and ask if this is a possibility.

Really nice to chat to you all on here!

Hey Julie you’ll have fun doing the PH study!!  Lucy had to have tube put down awake, but do you know, typical TOF attitude, she just got on with it!  Took a while to get used to it about an hour, like she was gagging for a while, dribbling as if she had a “stuck”.

You have this little machine thats conected to the wires and your child has to carry it around in a little back pack all day!!!!!  Fun isnt the word.  We are potty training as well and because we live so far away from the hospital we had to stay there the full 24hours.  You have to press buttons on the machine to tell it when the child is eating, drinking, laying down, sitting up, coughing etc, then again when they have finished eating etc. 

Just to add to it you have to keep a written diary too.  This is for the person who’s working out the resultscan compare what the machines telling them to what your child has been doing.  Good luck with it!  Results were very interesting though and only takes 10-14 days at most to get back.

Julie, do you prop your son up in the night?  We have brought a pillow rest we have actually put it under the top half of Lucy’s mattress so she is at id say a 45 degree angle.  Seems to be much better and the rattling noises are less brash too.  Worth a try if you not already doing it!

Hi Teresa

Our son Jack had a fundoplication in March. It was a half wrap (called a Thal) instead of the full wrap Nissens. The drs did this as he has such poor peristalsis and they were worried about him eating. It has come undone so he is having the Nissens in January.

We were in hospital for a week with one night in high dependency. Jack was in a fair bit of pain but the staff were right on it which was really great. If you think Lucy is in pain, tell them. He really surprised me with how quickly he was up and about. He did tire easily but he was determined to play.

When we got home it was really hard. As the stomach is now small, Jack had to be fed hourly during the day - milk or food- as well as milk overnight via the pump. We had to go back to first stage puree, really fine. Doing that, plus looking after my other child was really busy. I had no clue that it would be like that. We were lucky that some wonderful friends helped out and cooked tea for the first 2 weeks. In Jan, I will have a freezer full of meals ready.

Jack was flat for a few weeks, just needing more cuddles and little breaks between running around playing. He managed coarser purees & lumps as the weeks went on & has recovered well. I know that he will do this again after his Nissens.

By the way, the scary thing is, Jack refluxed for 51% of the ph probe test 24 hours and didn’t even complain once. Lucky I insisted on having this test done to see if the Thal had worked. He either doesn’t feel it or he is just so used to it.

Hope it all goes well. I have read about lots of TOF children that have had it done and are thriving.

Jody

Hi Jody, Thanks for message.

Luc was just the same 61 reluxes in the 24 hour period and didnt complain once, no sickness either!  Which hospital are you under? Where abouts are you?

Im just waiting for the appointment to come through. The days are long!  Im not to good health wise myself, I have a really bad back from carrying lucy.  Just has Epidural and steriods put into my spine 2 days ago so hopefully it will start to work by time Lucy goes in! Its really going to be hard with 2 others at home too.  You feel bad for leaving them yet you cant leave the one in hosp either!  Im kind of hoping they will operate on Lucy in Jan tooas xmas is soon to be here and it is her 2nd birthday 20th December!

The meals in freezer a great idea, I will have to get cooking.  Also can take them in hosp and microwave, as resturant ad take outs get expensive!  Have brought a massive meat hamper for xmas so I haveno excuses!!

Keep me informed of how your little one is getting on especially after his op.  Il do the same.  Thanks

Hello, 
    Very interesting reading about the pH and Nissen fundo.  We had to do the study before christmas and the results were not good.  Barnaby refluxes for 27% of the day so we have an appointment to discuss op.  What else should we ask about relating to the operation?  We are under Bristol Childrens Hospital who have been proactive with his care but I took the news badly and really do not want Barnaby to have another operation but equally I can not bear the thought of him being in pain and discomfort for so much of the time.  He is a really cheerful little boy but a little unsettled at night, well a lot unsettled at night.  This is a little tiring as he is my third.  But I think he must be very brave to put up with so much.  It seems that TOF children have a fantastic way of coping.  Would be pleased of any other thoughts on the Nissen as we are due to see his consultant on 23rd Jan.
thankyoy Debbie

Hi Debbie,

The first thing you should ask is if anyone at your hospital can do it via Key Hole surgery.

Lucy went into hos over new year due to a “stuck”, her surgeon came in new years day just to operate on her - which was really nice!

Anyway when he came to the ward to see us after the op, he said that his senior would be doing the Nissens and he was under the impression that he will be doing it via key hole.  Alot less recovery time needed and no massive scar!

Lucy had 61 refluxes in the 24hr period, dont know what percent that is but its alot.  I dont understand how she dont let it bother her that much, I agree with you though, nights are terrible, Lucy is my third too and the others are only 5 and 6!

We too are due anytime now to see the consultant re Lucys Nissen.  I know il ask about if he can do it via keyhole, how long recovery, will she have to go to ICU, what and how soon will she be able to eat after, will she have to have a gastromy tube.

Hope this helps.  If you wouldnt mind emailing me after your appointment, it will be interesting to see how different hospitals do the same job!

Also let me know of any questions we should ask!  I do know that they are keen to do the op as reflux can cause (and is causing on Lucy) abnormalities in the oesphagus, throat and even the ears!

Does your little boy have any abnormalities like this?  They just said that she has abnormality in her lower oesphagus and in her vocal cords and also one of her ear drum appears dull, she had an ear infection and noticed this!

Thanks Teresa

hello Teresa,

thanks for reply.  Barnaby does havo some oesophogitis low down near to the stomach and had three chest infections in nov possibly due to aspiration although I think that having two older sisters 4 and 3 that the infections were just due to bugs in general! The reflux luckily has not made his stricture worse as last time he went in they did not need to dilate. Our appointment is 23 jan will let you know any news from that.  In the mean time more sleepless nights with worry and reflux!

take care Debbie

Hi Debbie

Good luck with the appointment.  My other 2 are coming up 6 & 7 in April! Bugs, bugs and more bugs!  Keep in touch.

Take care bye for now Teresa

Hello there
just thought I would update you.  We went for our appointment yesterday with consultant in Bristol not a great success.  She feels that he needs the nissen and I had got my head around that but she can not do it laparascopically (key hole) so she has to refer us to another surgeon so that is another wait until we get some answers.  I am glad that the procedure can be done key hole but am frustrated that it is not offereed this way unless like us you ask for it.  feel that the less invasive method has to be best.  I was oping to come away with a date for op or a plan but now just have another wait to see if new doc wants more tests a repeat pH or to see what he is like in a few months but not likely he will grow out of it as she said it was very severe.  The only positive is that Barbaby is great at the moment really well crawling, vocalising eating well and some nights even sleeping!!  He was not great yesterday he really does not like being in the car for long periods think that the car seat position must squash his stomach and make him reflux.  Hope you are well.  Back to not knowing and not being able to plan for us!!
love debbie

Hi Debbie,

Bless ya, its all a waiting game.  We were told in Nov that Lucy needed Nissens but still havent been in yet!  I was dreading that it’d be over xmas and new year but heard nothing!  Mentioned it when she had her stuck removed over new year and finally got an appointment 12th of Feb to see the senior surgeon for a chat about it!  Wonder like you how long the wait will be!  Its the kids birthdays in April (3rd and 25th) they are bound to take Lucy in then now im organising a party!!!!

We are hopefull for key hole too, il let you know when we have seen the consultant!

Keep in touch though! Teresax

Hi Teresa,
I’m Sarah, I’m 19 and I was born with TOF. I had a nissen fundoplication when I was 3. If you would like to ask me any questions I’d be happy to help as I can give you a fist hand experience

Hope I can help xx

Hello Sarah

Thanks for reply.  How are you now a days with your TOF?  Do you have any problems still? Choking/chest infections etc??

You were prob too young to remember how you felt after the Nissens but can you remember anything?  Has you parents said how much it helped you?

Can you eat sausages?!! Na joking with that one, my Lucy loves sausages but no matter how small we cut them/mash them she gets them stuck!  Went to hospital over new year as she had piece of sausage stuck and had to go to theatre to get it out!

So many questions but wont bombard you all at once!  My main question and I guess all of us with a younf TOF child would be how are you now?

Thanks again and hope I havent asked too much all in one go!

Teresaxx