Hello all

We have been to see the consultant today and he is going to to the Nissens on Lucy!

He is going to opt for partial wrap via keyhole if poss and to insert a gastro tube!

He was a bit undecided as to whether or not to do the op as he said when you have nissens it makes it harder for food to pass and is concerned that it may make the choking worse to start off with!!

He was weighing up the pro’s and con’s for what seemed to be hours!!  He decided to go ahead and hopefully it will cure the reflux issues and Lucy has some abnormality in the lower Oesophagus so in time that should heal too!

31st July she is going in so wish us Luck!!

Jo, hows Jack getting on, havent spoke to your for ages love sorry.  We are moving next week again too!!  I must be mad.

Debbie, do you know when Barnaby goes in??

Teresaxx

Dear all,  have had the strangest couple of days.  Took Barnaby in to Bristol on wed for fundo after much worry and lots of sleepless nights.  The consultant came to see us straight away to discuss how he was feeding and sleeping etc and I told him how Barnaby was much improved with sleep and as long as the food is the right texture quite sloppy and smooth he eats well.  By the time Ed had parked the car and come to the ward they had decided not to operate after all.  Great news!  However they did a diltation and took some biopsies to check for oesophogitis.  The consultant felt that he should check him again in six weeks to monitor the stricture as this may be why his reflux is not so bad at the moment.  They changed his meds to omeprazole and metoclopramide and we will see what happens.  Am feeling very releived but he did say that he may need the op at some time in the future so not off the hook yet!  Very strange to be home the same day after expecting to be in for one week.  Will keep in touch.
lots of love
Debbie

Hi Debbie,

That is great news, fingers crossed for the biopsies resutlt!!  Thats what happened to us with Lucy.  Unfortuntly They have now decided to go ahead with a partial wrap for Lucy as she does have Oesophogitis and cells that change can lead to more serious things later in life.

I dont want to scare you into thinking that Barnaby will have to have Nissens because all TOF kids are different as we all know!!

I will say keeping a close eye on how they are feeding and seeing the consultant every six weeks or so has bought Lucy another 6 months or more without having to go to theatre so that in itself was a god send!! 

I wonder if they explained to you the down side of Nissens, we were told the other day that it makes the oesphagus tihter and sometimes can cause even more of a problem for foods to pass down.  Did they mention that to you??  I was quite upset to find this out just the other day as noone had explained that side effect before now!!  They have putting a Gastromony tube in whilst in theatre just in case for Lucy!!  We are booked in 31st July!!  Be good to hear on what side effects your consultant has explained to you if you dont mind talking. 

Thanks Teresaxx

Hi

Great news to hear about Lucy.  Bet you are pleased to have some action taking place now Teresa.

Devin is not doing so well.  He had a dialation done at 10am on Thursday, it took an hr.  His oesphagues, (sorry spelt wrong) is as wide as they can get it and looks perfect.  Sad thing is that since coming out of thearte he refuses to eat solids and over a 12hr period will only drink 100-150ml of liquid, apparently it is no big issue or anything to worry about with the surgeons but the pediatrican says the oppisite and has said that I need to take him to them today, Saturday, so that they can say that whatever is wrong and then heres hoping that some action is taken.  Sad thing is I havent taken Devin home since the op, I kept him in Hamilton at friends and now have to drive 3/4 the way home to see the pediatricans to most likely turn around and come back to Hamilton.  Pediatricans think that he needs a tube to be put in to feed him, why does that not suprise me.

Devin also has been agreed upon for the Nissen.  His score was worst than we thought cause he was on losec when he had the pH study done.  Only think is they dont think they can do it at the moment as he is not big enough in their opion to do it.  How big do you have to be?  They think that they will wait for his surgeon to return as well, I am loving the sound of this as I do not feel that the locum cares a bit about Devin and thinks that I am over recating.

Better get going got a long drive to get to Rotorua and it is frosty and foggy up here to.

Hope everyone else is having better luck than us.

Jo

Sorry to hear about all that driving about at least NZ is a beautiful place to be doing it!  After feeling really up beat am now feeling a little down.  Barnaby has been really sick since the dilatation last night must have been sick everything he had eaten until he was just retching poor little chap. Seems that the consultant may have been right that the stricture was what was stopping him from refluxing it was wide enough for smooth food to pass but just stopping a bit of reflux.  It makes sense that the nissen can make it harder for food to pass which makes me think that it is a far from ideal solution. Also that NZ site on reflux says that for children with dysmotility it is not ideal and surely that is all TOF children, the more I think I understand about the condition the less I realise I actually do!  On a more practical note now Barnaby is on losec he is not too keen to take it any tips on how lucy willl take it mine seem to take ages to dissolve and even then it seems a bit grainy is this right?
keep in touch
debbie

Hi

Turned out if the surgical team had of looked in Devin’s mouth they would have seen that he has blisters all down the back of his throat and on his tonsils.  Rotorua were good and gave him some meds to numb the mouth and he was able to eat little bits last night, and drink all night and this morning.  We were able to go home today, just hope he doesnt get worst.

Debbie i found that sprinkling the granules on the food was easier to get Devin to take, and then that way if he was sick after i was able to see how many came back up if any.  Yes i was told to count how many granues i gave him and if he was sick how many he brought up, since doing it this way he has hardly been sick and he is really helpful as far as it goes for getting him to take them.

Jo

Hi TOF mums

I just wanted to try and ease your minds about the fundo too. Our story is much like Jody’s.

Kaytie (2.5) had one at 9 months old and I feel it was best thing we ever did. I was so apprehensive about getting it done, that it was cancelled three times lol. But she eventually had it at 9 months old. There were a few complications with getting used to it as I think the swelling made her oesophagus feel tight, but after a while it went away. She had a nasogastric tube for a little while after that, til we made the decision to pull it out and wait til she ate on her own (15 hours later she had 40 mls!)

Kaytie has never drank more than 150mls at anyone time and is still a picker eater, but she does love food and trying new things. She has never had the tube back and she doesn’t reflux anymore. Kaytie was a silent refluxer and was getting alot of strictures and that stopped straight after the fundo, until recently where she is needing a dilatation here and there.

Good luck with it, but be careful about reading some of the stuff on the internet as it scared me to pieces before Kaytie’s op, but we haven’t looked back.

Laura (kaytie’s mum)

Thanks Laura

Thatis great to know.  Lucy too is a silent refluxer, well actually she is silent about all her problems nothing bothers her, you can see she looks physically drained or in pain but never utters a word!!

We go in on the 31st July.  At least school hols and my other children are going to my mums for a week!  They’l have such fun hopefully.  The only thing Im really worried is the tightening of the Oesophagus.  Consultant is quite apprehenive about this and apparently is why he decided not to go ahead earlier in the year.  Lucy has enough choking episodes and be awful if it was to worsen!  She currently chokes most days at least once.  Who knows whether it will be worse or better but its better to have it done as we’d be wondering all the time should she!!

Il keep you posted!!
Teresaxx

Hi Terresa

How was Lucy’s op?

I have just had aphone call to say that Devin is having his fundo wrap on the 11th of August. Rather shocked to hear that as I was told a month ago he doesnt need it wonder whats going in their minds. Now I have a week to sort out all our appointments that need cancelling as we are going to be away and rebook them all.panic mode is well intruely in gear.

Jo

Hi Teresa

how is Lucy? how are you? is the operation today? best of luck.will be thinking of you’s

Maxine x

Hi Teresa,

Just quick message to say we’re thinking of you here at TOFS.  Don’t know if Lucy’s gone in to-day for her Nissens but will keep an eye on the forum to see how she (and you!) have got on?

All the best,
Diane at TOFS

A Nissen Fundoplication was seriously considered when my daughter was 5 months old.  After calling a meeting of the medical doctors (all in one room) it was decided that we would not do it and watch her closely.  She is now 2 and never thankfully needed it.  But my specialist surgeon gave me the reason this surgery would be indicated.  I will share these with you in the hopes it may help.
1.  Apnea or Bradycardia
2. Blue Spells (Syonotic, gulping)
  -could also be symptom of mini-aspiration with oxygen saturation rates dropping.
3.  Pneumonia
4.  Bleeding in stool (ooze that you don’t see visably.  It is due to persistent anemia or iron poor anemia.
5.  Failure to thrive (i.e. vomiting and reflux prevent growth)
He told me that first they would try to manage the above with maximum medical methods, but the surgery is considered necessary in 20-25% of the cases.  The surgeon I use has 18 years experience with TOF/OA kids and has treated over 40 children.  He has never had had a problem with any of his kids having this surgery when it was indicated. 

I am writing from America, so my terminology may differ slightly.  But my daughter’s surgeon, Dr. Frederick Alexander, did 6 other surgeries on her.  She is now two and we’re still not out of the woods yet, but she is doing wonderful.  Hope this information is helpful.
Linda

Im sorry I havent been on here for ages what with one thing or another lol.

Lucy had her Nissens although was rough at the time and ended up in for about 8 days I think, she had trouble swallowing for approx a month went back onto purees for a while and her ranitidine.  But since say 5-6 weeks after the op she hasnt had many chokes!

She still doesnt eat well and has a gastro tube which she has 500ml feed through the night!  I do think the Nissens has helped though.

Teresaxx

Well what a week
I was going to put a message up tues to say that things were looking up and we were finaly talking about coming home with the consultant.
however didnt get round to it.
Today saw the consultant again and they are concerned that with his TOF plus other complications ( cleft pallet and micrognathia) that he isnt going to be on feeds for a while depending on what the specialists from JR and AB say. so we should look at having assistance on coming home with nursing help (once funding is found), as it may be too much for us to deal with 24*7
also we should consider a gastrostomy which while that was being done they would do a fundoplication.
it was a bit of a shock as I was hoping he would be coming home soon even though it would be with suction, Sat monitor etc.
has anyone else been offered this help and was it needed?
what is it like having the fundoplication done and is it easier than the nasogastric tube to manage?
Im just shell shocked at the moment as I hadnt seen this coming today.
Well suppose It ensures we get our 100 day card next fri
Darrell

AWWW Darrell, bless ya. Big shock hey.

Nissen was bit stressfull for first couple of days but after that Lucy was much better.  Choking decreased obviosly with the decrease in reflux. 

She has a gastro tube, loads better than nasel gastric, least you can tuck it out the way.  The area arond the entrance to the stmach neds cleansing n tube flushing with water before and after feeds but other than that daily care is easy.  If they intend on having tube in perminantly or long term ask if they’l put a button in straight away. Lucys gunna her tube changed to a button next month.  Shes had it in since last July!!  Just means one less trip in if they will put button coz tube needs to be changed after a year.

Good luck xx