Having a nissen and g-tube inserted... UPDATED 4-16

[Lillypug]

Noah is scheduled to have the nissen procedure done and have a g-tube inserted tomorrow morning. He is 7 and I am a nervous wreck.



Has anyone or your children or fmily members had this done and how was their recovery?

I don't know what his orders will be post op regarding his feeds, but what do you guys do when you are on vacation or on the go with a g-tube? Do you do their feedings in the car? I cringe at the thought of doing his feedings in a public bathroom. At least at Disney they have forst aid places to do his feedings.

 

[eternaldisneyfan]

Nowadays, they do the surgery laproscopically. Several (I think four) 2 inch incisions are made and small instruments do the surgery through these incisions. Standard recovery is 4-5 days and they try feedings within 24 hours.

My nissen/g-tube had to be done the old way with the 6-8 inch scar. I had some problems with feeding due to gastroperesis. It can be (was for me) difficult to get the stomach to wake up from the anesthesia. Gas build up is a problem so make sure they vent the tube.

After surgery, the g-tube will be a foley catheter with stitches. After the tract is healed, this will be replaced with a button. I recommend the mic-key. I do 24 hour tube feeds via pump and just carry it around on the back of my chair.

The nissen definitely helps with reflux. The bad thing is that it's very hard to burp gas, it's virtually impossible to vomit so if you are nauseas you dry heave, and sometimes it is harder to swallow.

Good luck!

Christamae

 

[dclfun]

I didn't need the nissen procedure but did have a g-tube placement several years ago. They even do them as outpatient procedures anymore and the recovery time is swift. Mine was pretty painful for the first 24 hours and I also had feeding started w/in 24 hours. If he isn't getting enough nutrition or hydration he will feel immensely better and have more energy right away without having to worry about choking or constantly trying to consume something. Like Christamae, I also use a 24/7 pump which sits on the back of my chair as breakfast, lunch, and dinner. I like it- once I'm hooked up in the morning I'm good to go!---Kathy

 

[Lillypug]

I think Noah is definitely going to feel so much better to have some real nutrition into his little system. I explained it to him like it is going to be his gas tank.
He is so ready for some relief with reflux. He suffers literally every single night even after 15 mg Prevacid 2 x's a day.

Thank you two for sharing your experiences. I truly appreciate it.

 

[dclfun]

I'm sprinkling some pixie dust for Noah! You did a good job of explaining things in terms a 7 year old can understand. I know watching my son go through a procedure is harder on me than going through it myself but you are doing the right thing and he *will* feel so much better. Have you discussed the feeds with the surgeon? Some prefer bolus feeds vs. a pump. ---Kathy

 

[SueM in MN]

I'm too late to wish you good luck.
hope things went well. A feeding tube was not something we have ever had to contemplate (although when she stopped eating when they switched one of her meds to a generic, it was looking like something we might have to think about).
When I did home care, there were some kids on my caseload with G tubes. Most of the parents said they were very glad they had done it because it made a big difference for their kids.

 

[Mickey'snewestfan]

My son didn't have a nissen, but he did have a g-tube

As to where I fed him -- wherever we were, just like any other baby -- if I would have felt comfortable nursing or bottlefeeding him there I felt comfortable tube feeding him (e.g. park bench, sitting under a tree, on the subway etc . . . ). Since Noah's old enough to understand not to pull on the tube, you can leave the extension hooked up (or you may just have a long tube -- that's how we started), and just hook it up at the end. That way you're "discrete" and noone needs to see you lift his shirt if that bothers him. The hang the pump or the gravity back on the back of the chair and you're good to go. I certainly didn't feed him in the bathroom -- I wouldn't have wanted to eat there so why should he?

In our case the hardest part of getting the tube was stopping eating -- my son loved to eat, but aspirated, so he was very disappointed to not be allowed to do it anymore.

Good luck! I hope your experience is as good as ours was.

 

[MarieS]

I came on the post too late, but I hope things went well for Noah. My son Alexander has a nissen and gtube( button). We went very slow with increasing his feedings and kept him on zantac ( even now). He was able to gain weight and I think it's helped keep him stronger and healthier.

 

[twinmum]

Hello! I am sorry that I am also too late to post...but I hope that all is going well. Our ons (who has cerebral palsy) had a nissen and g-tube placed at age 4 and he he is now 8. Having the fundo and the g-tube was the ebst thing we ever did! Yes, it takes some adjustment, but I hope you'll become comfortable quickly. I don't know what your situation is - our son has CP, had BAD reflux and vomited 7-10 times a week - zero weight gain for 2.5 years (1.5-4). He is a very bright fellow who couldn't move progress with shi mobility wihtout propoer nutrition. He had lost all interest in food...hey, why eat when it will just give you pain and make you throw up?

Four years later, he does enjoy food, but as it is still a motor activity that tires him, he doesn't eat enough for us to remove the tube. He has energy, he has stamina. What's most important, he is pain-free.

He is also VERY articulate and has been able to explain things to his G/I that no other kid has. As the doc says - he personally has never had a fundo and a g-tube, so isn't it great that he has our son to give him insights?

There may be things that your son is experiencing as he recovers and onwards that our son could help him understand. Please feel free to PM me and maybe we can exchange info between them. I am not consistently on the DIS boards (our WDW trip last fall may be a 1-2 in a lifetime!), so perhaps you'd like to PM me now so I can give you my email address for future reference. Feedings on the go can be remarkably easy, just takes some getting used to.

Now for the good bit of advice. Before you administer any NEW med via g-tube, make sure the team undestands that you are going to use a g-tube. And specifically...Biaxin does not, repeat does not, go through a g-tube! (Biaxin is used for pneumonia, esp. if enusre whether viral or bacterial) we learned the hard way!

Be patient with yourself as you learn how to use the g-tube. Soon you'll be a complete pro!!!

Hoping your son is enjoying a good recovery,
Twinmum

 

[pnutallergymom]

My DD7m has Noonan Syndrome. She had open heart surgery 12/06 and had Ladds procedure (open) 3/15/07 and gtube(mic-Key button)placement too. You will be amazed at how well kids do..As the PP said, talk to the surgeon about their plans on the type of tube, Mic-key or PEG. Also, will your son be totally g-tube dependent or will he be able to eat and use the tube for catch up? At this point, my daughter gets continuous overnight feeds to catch up on what ever she didn't take during the day. She also has severe reflux, but never aspirates, so she can still bottle feed. I wish she had the surgery sooner..giving meds through the tube is so much easier. Try to ask for a zevex infinity pump with the supermini backpack. The social worker should be able to help you with this. Also look at parent-2-parent.com for alot of good information. Another thing to remember is sometimes reflux can get worse for a short time after g-tube placement, it will eventually resolve even with the nissen. Good luck and Hugs!!! You will be a pro in no time!!

 

[Lillypug]

Here is an update-

Noah's surgery was on April 3rd. He had the Nissen fundoplication done and a g-tube. He had to spend 3 days in PICU because of severe pain and not keeping his O2 sats up. He also developed a UTI that was not discovered until later. We kept telling the doctors and nurses that Noah was not behaving like his normal self. The recovery rooms nurses were terrible and really set the tone for Noah's recovery. They thought he was mad when he was crying but the kid was in freaking pain. I truly regretted putting him through this surgery up until a day or so ago. He has been having a hard time tolerating his feeds, and he was resenting the g-tube. He was afraid to move, take a bath etc for fear of hurting or pulling the tube out. He also has ALOT of pain when he eats by mouth. We decompress him but sometimes that doesn't help completely. At least we are home now and are hopefully on the right track now. Things are slowly looking better every day .

Thanks to all of your replies. They have helped me more than you know. When things were at their worst, I kept thinking about a positive outcome for Noah and that he would feel so much better with no reflux and better nutrition. That is what kept me from going completely insane

 

[kayc86]

I dont get on here very much so this is the first time I seen you post.My DS is also 7.he had the same surgery done4 years ago when he was 3.The first few day/weeks were really hard for him.He doesnt talk but I knew he was in so much pain.after they sent him home all he was doing was sleeping so I took him back to the hospital cause i knew something was wrong.Hes body had started to shut down because of the g-tube.he stayed in the hospital another week.i thought i was going crazy!!
now 4 years later he is doing so much better.he is off all his reflux meds and doesnt cry all night in pain.its hard when your going through it but you will look back and be happy that you did.I hope he starts feeling better soon!

 

[dclfun]

Thanks for the update on Noah. I'm so sorry he had to go through so much. I spent three days in the adult ICU too and had severe pain when other people told me they'd had theirs done as an outpatient. Are they going to give him a button eventually? This will help with his concern about the tube because it is sensitive and if he's transferred then someone has to be sure not to catch it. Please send him our love. ---Kathy

 

[Lillypug]

He does have a Mic-key button. I guess it is an adjustment for him because he is 7 and is not mentally disabled so he is completely aware of his body image, etc. I am doing everything to make it postive for him and help him feel OK with it. As the days go on he is feeling so much better about it. I showed him the pump and the backpack we ordered and is really excited about that. The pumpis going to help tremedously with him tolerating his feedings. Boluses are hit and miss with him because sometimes he feels fine afterwards and sometimes he has pain and nausea. I take about 30 minutes for 3 ozs so we go very slow.
He really is such a good kid. I just love him and am so proud of him.

 

[SueM in MN]

I was gone when you posted your update, so I missed it. Glad to hear things seem to be going better now.
Sending lots of pixie dust (and we are at WDW now, so the pixie dust is really fresh).

 

[Forevryoung]

Here is an update-

Noah's surgery was on April 3rd. He had the Nissen fundoplication done and a g-tube. He had to spend 3 days in PICU because of severe pain and not keeping his O2 sats up. He also developed a UTI that was not discovered until later. We kept telling the doctors and nurses that Noah was not behaving like his normal self. The recovery rooms nurses were terrible and really set the tone for Noah's recovery. They thought he was mad when he was crying but the kid was in freaking pain. I truly regretted putting him through this surgery up until a day or so ago. He has been having a hard time tolerating his feeds, and he was resenting the g-tube. He was afraid to move, take a bath etc for fear of hurting or pulling the tube out. He also has ALOT of pain when he eats by mouth. We decompress him but sometimes that doesn't help completely. At least we are home now and are hopefully on the right track now. Things are slowly looking better every day .

Thanks to all of your replies. They have helped me more than you know. When things were at their worst, I kept thinking about a positive outcome for Noah and that he would feel so much better with no reflux and better nutrition. That is what kept me from going completely insane

Grrrr I'm sorry you went through that... this is why alternative communication needs to be integrated into hospitals- I don't know how your son communicates usually, but there should have been some way available for him to express that things weren't right. Sorry, it's a peeve of mine- hoping to change the situation one day soon for at least a hospital or two. Until then, I'll stew at the injustice.

I hope things continue to improve. Funny story: I know a girl who had a g-tube when she was younger for quite a few years. When she turned 18 she got a small tatoo put just above the scar that says "feed me". Says it makes her feel better about the scar

 

[Poppinsme]

Here is an update-

Noah's surgery was on April 3rd. He had the Nissen fundoplication done and a g-tube. He had to spend 3 days in PICU because of severe pain and not keeping his O2 sats up. He also developed a UTI that was not discovered until later. We kept telling the doctors and nurses that Noah was not behaving like his normal self. The recovery rooms nurses were terrible and really set the tone for Noah's recovery. They thought he was mad when he was crying but the kid was in freaking pain. I truly regretted putting him through this surgery up until a day or so ago. He has been having a hard time tolerating his feeds, and he was resenting the g-tube. He was afraid to move, take a bath etc for fear of hurting or pulling the tube out. He also has ALOT of pain when he eats by mouth. We decompress him but sometimes that doesn't help completely. At least we are home now and are hopefully on the right track now. Things are slowly looking better every day .

Thanks to all of your replies. They have helped me more than you know. When things were at their worst, I kept thinking about a positive outcome for Noah and that he would feel so much better with no reflux and better nutrition. That is what kept me from going completely insane

I'm so sorry to hear about your experience in PICU. I have worked NICU/PICU for years and have always listened to the parents. YOU know your child.
I hope Noah is feeling better.