Posted By Posting
Nov 21, 2009
johnniesnewmommy
?'s about fundo
Hi everyone, It's been a while since I have been on here. I feel like I don't have enough hours in the day to check in on all the boards we now belong too with all of Johnnies issues and my oldest being in the marines. So quick update, Johnnie has confirmed EE and is now 16 months old. He has been neocate jr only for almost 4 months now. He is still aspirating when he feeds, despite the normal swallow study. Part may be from the belly up- previous upper gi showed aspirating with reflux. Since he was about 4 months old, he has not been laid down flat for anything other than his surgeries, which every time, he got nasty lung infections within hours of the surgery. Went to the ENT dr, and found a cleft in his esophagus which ENT thought was causing problem with possible aspirating on formula. So we went and had that operated on but it only made matters worse. Where he was choking on larger quantities of formula before- he now chokes on a teaspoon. During the surgery his airway sealed off completely, requiring the dr to go and cut out what he just fixed along with some more tissues still blocking his airway. GI doc wants to go ahead and do the fundo at the same time as we place the feeding tube and just get it over with. I am in agreement. We have fought the fundo since we found out about the reflux, I have done everything I could hoping he would out grow it so he wouldn't need it. Now with the EE and severe allergies and the reflux and the aspiration, I just want it done so maybe the kid can at least lay down with out flooding his lungs. I am looking for some input on the fundo- what do I need to know? They initially were going to try an NG tube first- and I said NO, because there is no way he would leave it alone. So we are going to do a G- tube with a button. Has anyone had both the fundo and the g-tube placed in the same surgery?
Nov 21, 2009
mommato3
big hugs to you! I've missed hearing about johnnie and yes you have been through so much with him. I will be praying for you. Holden is still having major reflux issues but luckily aspiration issues aren't as bad as johnnies so we are holding off on the surgergies. I will be praying for you. Sorry I can't give you any advice on the surgery. I do know they almost always put in a g-tube with a fundo with these little ones so you can vent them anyway but I also know people that have had the g-tube without the nissen done. You will hear horror stories of the nissen but I have also heard many positives stories as well. Certainly it is a major surgery that should be a last resort when things are life threatening like aspiration. A couple in my sunday school class has a son that had a nissen done and it has worked well for them. Praying for you. Keep us updated please when the surgery will be. Thanks!
Nov 21, 2009
mommato3
Just thought about these things: There are two types of fundos open and laproscopic (both with pros and cons the laproscopic is supposedly easier recovery though) so find out what type they are going to do. Find out about how long they expect him to be in the hospital and stay on top of the pain meds (I have heard this from other moms). The first day especially make sure they stay on top of it and what other moms say is that after the first 48 hours their kiddos usually just need tylenol. Make sure they help you get the rate adjusted for his g-tube flow prior to leaving the hospital and that he is tolerating his feeds. Did they talk to you about trying a J or GJ tube first? This would give him a feeding tube without the risk of aspirating reflux and not having to do the nissen. They feed them right into the intestines (bypassing the stomach so to speak). Also make sure you get a good surgeon for the fundo. That is so important. If it is too tight then things don't go down. If it is too loose then you are right back where you started. It has to be done just right. Also find out who you will need to call if problems arise (surgeon, GI, etc.)
Nov 22, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
If they will be doing a G tube anyways, why not just do a G first and see if going NPO (nothing by mouth) and doing tube feeds will alleviate the aspirations issue. You can always go back and do the Fundo later....KWIM Once it's done, it's done, there's NO going back on that one.

The VAST majority of kids will have their Fundo done closed. The only kiddos who need them done open are those will odd anatomy (rare) or kids with lots of scare tissue. If Jedd had needed one, they would have tried a lap. but then probably who have had to do it open as he has scare tissue from his VSD repair.

FWIW a Fundo is a total lifesaver for tons and tons of kids. I'm glad to hear they will be doing a G tube with it. At least that way you can "vent" all the gas bloat issues that will arise with a Fundo.

How are they currently treating the EE??

Believe me, trying to get them to leave an NG alone is really hard to do. Jedd didn't know life without his for soo long, that it became second nature and he didn't bother with it. But older kids, even those of about 6 months old when they get it, it's NO DICE, they hate it Period. Can we really blame them, I wouldn't volunteer to have a tube shoved down my nose. :(

Also, the thinking that a hospital "has" to do a Fundo along with a G tube is antiquated thinking. It does not have to be done that way. If you feel that all you need to do at this point is a G tube which can be made into a GJ tube for tube feeds, then by all means, stand you ground and take on the fight. We did and have never regretted it.

But if you feel a Fundo is just inevitable, then by all means, like I said, it literally saves kids lives.

In our situation, we asked for time. Time is precious especially to a child with GERD. We were granted our request and never looked back.

This is JMHO but, I would sooooo soooo choose a GJ or G prior to doing a Fundo. Again, this comes from someone who did almost strictly tube feeding and no oral feeding for about the first 18 months of her son's life. He didn't know what it was to "eat" food. He never did it. So, to us, it was a no brainer, we would have done GJ feeds prior to a Fundo. But, that's just us. We were very comfortable with it because frankly, I never had to learn to "feed" an infant, he was on tube feeds from such a young age, that's all I know in regards to feeding a child/infant.

Have you found me on FB yet??? I have LOTS of pictures on their of Jedd's G tube and his Post Op from having his surgery done. (no Fundo though). That way you can at least "see" one and the pump stuff that comes with one.

Nov 22, 2009
johnniesnewmommy
Jessica, no I havent found you on facebook, I will try to find you and send a friend request. I have become addicted to my facebook. Lol I really believe that now is the time for both surgeries. We have struggled so long, and he just had a surgery on his esoph that was supposed to help aspiration but now he chokes on everything. His EE is being treated by Neocate Jr only diet with a combo of steroids. I wanted to go formula only, at the GI request, but he has so many aspiration/breathing problems and environmental allergies that between the allergy dr and the lung dr they have him on a boat load of meds and I can't seem to get him off of them long enough to find out if the EE will be controlled by diet alone. It's very frustrating. Here is my thinking, and It may be completely wrong, so please speak up if it is. I am thinking that he is 16 months old, he can't lay down AT ALL, because if he does when he sits up his lungs are full of crap that he has to cough up and on the rare occasions when he is laid down for more than a few minutes, such as surgery or testing, then he has a nasty case of pneumonia and his lung has collapsed on one occasion. In my mind- with the fundo- then that stops that from happening and he may at the very least be able to lay flat without pneumonia. His reflux is so bad that to this day he still wont crawl or lay himself down. He learned to scoot on his butt like a monkey so he wouldn't lean over and he has just learned to walk, thank goodness. Anyone who doesn't know him thought he was retarded because of the way he moved around. I thought he was a genius because he learned to move around in a way that didn't cause him to hurt or get sick. He has such a hard time tollerating the surgeries, because of the breathing problems, but also the anesthesia. Every time we have to do another one, he has some strange complication and scares me to death. So if we are going to do one, I really want to do both at the same time and save him from another surgery. He has to have the feeding tube put in, and they should have put it in long ago. He is not on the growth chart for his weight anymore. Since going formula only he has lost over a lb a month. I know thats not a lot but considering he's a tiny thing to begin with, its hard. He has also been to the ER for IV's because he refused to take his formula or water, which is the only things he can have. He WANTS to eat so bad. He has resorted to eating play doh that other kids dropped, mud off a brick wall when his stroller was set to close, and anything else he can find. So I can't imagine going completely nothing by mouth. I just need to make sure I have a way to get nutrition in him when he is refusing or sick. So basically I'm thinking, The tube will allow me to supplement feeds, and the fundo will keep the stuff from coming back up into his lungs. The GI said we may have to go completely nothing by mouth, if he is still having aspiration issues after the fundo but I'm praying we don't.
Nov 22, 2009
johnniesnewmommy
Mommato3 - I have missed you guys so much! Thanks for all the suggestions.
Nov 22, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Just as a warning, the majority of kids I know that have gotten a Fundo and had weight and eating issues prior to the surgery, well, they end up NPO and on the feeding tube. :( Sad but true.

I don't know why I didn't ask this last night, probably because I had just gotten off of a 16 hour work shift...LOL But, is the only reason they are saying he is aspirating if due to that Upper GI??? IF so, I sooooo would not believe that at all. If you can get a swallow study done, I'd do that first. If you can't get liquid in him since he doesn't like his formula, do a solid like pudding with the tracer of applesauce with the tracer in it.

I would think that a MBSS would be a great option before a Fundo because it can tell you for sure if they are aspirating from above when swallowing or if they are aspirating from below when they reflux up food or liquids.

Also, with a GJ and continuous feeds, aspiration *can* become pretty non existent. The stomach will have no food in it so a child has nothing to aspirate up. Some kids will aspirate up stomach contents and a Farrel Valve Bag can be used to drain that and lessen the chance of aspiration even more.

Remember, you can see a GREAT decrease in reflux issues if you can make it to 2 years old. We did, if they let you go until 3 even better.

You know, with surgical complications like that, it might not be a bad idea to try an NG for a bit, like a month. It would be really really hard. Most of the time they admit a child to do the trial, so you would have the help of the nurses until all things seem stable and then you go home. You will probably get home nursing care as well to monitor the tube and weight as well. You can have the NG advanced down to an ND or NJ also and see if that will help with the breathing and laying down issues.

Jedd was the vomit baby until we were in patient after heart surgery, they had him on an ND tube during his stay to give his body a break. He didn't vomit a single time the entire 8 days we were there. They pulled his ND up to an NG and we have vomit within 24 hours at home.

Can we say Jessica made the wrong choice when I repeatedly told the GI I did NOT want a GJ tube??? :-( It's the major mistake we made in Jedd's care. I sooo wish looking back that we had just caved and done a GJ, it would have saved us sooo much heart ache and Jedd's quality of life would have drastically improved as well as his health and well being.

Deep down when you make this decision, you need to go with your gut. It your Mommy instincts are screaming at you to do the Fundo and G tube, then go for it. Make the best possible decision you can at the time and don't regret it.

Here's my FB link and if you can't find it from this then look for me by my email here: onion95@gmail.com

http://www.facebook.com/profile.php?id=1286907113&ref=profile

Nov 22, 2009
johnniesnewmommy
We did a swallow study, back in the day, before the EE diagnosis and it was normal, just showed a slight delay in swallowing. Just my opinion, I found out after that they usually do the swallow study with different thickness of liquids. They only used on on him during the swallow study. He wasn't very cooperative and I think they just rushed through it to get it done. We ruled out the NJ tube for several reasons. The first being he would NEVER leave it alone. He freaks with the pulse ox on his finger. I needed a sedative when we did his sleep study because he screamed all night because of the wires and we had to restrain him just to keep the wires on. He is also in daycare and has a 2 yr old brother, so I was also afraid that someone else would pull the tube by accident. We couldnt even do a PH probe because he wouldnt leave it alone. For such a little guy, he sure is strong. I will definitely talk to the surgeon about the GJ tube. I havent done any research on that type of feeding tube, so I will do some so I will be a little better informed. I just found you on facebook and sent you a friend request.
Nov 22, 2009
johnniesnewmommy
We did a swallow study, back in the day, before the EE diagnosis and it was normal, just showed a slight delay in swallowing. Just my opinion, I found out after that they usually do the swallow study with different thickness of liquids. They only used on on him during the swallow study. He wasn't very cooperative and I think they just rushed through it to get it done. We ruled out the NJ tube for several reasons. The first being he would NEVER leave it alone. He freaks with the pulse ox on his finger. I needed a sedative when we did his sleep study because he screamed all night because of the wires and we had to restrain him just to keep the wires on. He is also in daycare and has a 2 yr old brother, so I was also afraid that someone else would pull the tube by accident. We couldnt even do a PH probe because he wouldnt leave it alone. For such a little guy, he sure is strong. I will definitely talk to the surgeon about the GJ tube. I havent done any research on that type of feeding tube, so I will do some so I will be a little better informed. I just found you on facebook and sent you a friend request.
Nov 22, 2009
johnniesnewmommy
We did a swallow study, back in the day, before the EE diagnosis and it was normal, just showed a slight delay in swallowing. Just my opinion, I found out after that they usually do the swallow study with different thickness of liquids. They only used on on him during the swallow study. He wasn't very cooperative and I think they just rushed through it to get it done. We ruled out the NJ tube for several reasons. The first being he would NEVER leave it alone. He freaks with the pulse ox on his finger. I needed a sedative when we did his sleep study because he screamed all night because of the wires and we had to restrain him just to keep the wires on. He is also in daycare and has a 2 yr old brother, so I was also afraid that someone else would pull the tube by accident. We couldnt even do a PH probe because he wouldnt leave it alone. For such a little guy, he sure is strong. I will definitely talk to the surgeon about the GJ tube. I havent done any research on that type of feeding tube, so I will do some so I will be a little better informed. I just found you on facebook and sent you a friend request.
Nov 22, 2009
johnniesnewmommy
We did a swallow study, back in the day, before the EE diagnosis and it was normal, just showed a slight delay in swallowing. Just my opinion, I found out after that they usually do the swallow study with different thickness of liquids. They only used on on him during the swallow study. He wasn't very cooperative and I think they just rushed through it to get it done. We ruled out the NJ tube for several reasons. The first being he would NEVER leave it alone. He freaks with the pulse ox on his finger. I needed a sedative when we did his sleep study because he screamed all night because of the wires and we had to restrain him just to keep the wires on. He is also in daycare and has a 2 yr old brother, so I was also afraid that someone else would pull the tube by accident. We couldnt even do a PH probe because he wouldnt leave it alone. For such a little guy, he sure is strong. I will definitely talk to the surgeon about the GJ tube. I havent done any research on that type of feeding tube, so I will do some so I will be a little better informed. I just found you on facebook and sent you a friend request.
Nov 22, 2009
johnniesnewmommy
We did a swallow study, back in the day, before the EE diagnosis and it was normal, just showed a slight delay in swallowing. Just my opinion, I found out after that they usually do the swallow study with different thickness of liquids. They only used on on him during the swallow study. He wasn't very cooperative and I think they just rushed through it to get it done. We ruled out the NJ tube for several reasons. The first being he would NEVER leave it alone. He freaks with the pulse ox on his finger. I needed a sedative when we did his sleep study because he screamed all night because of the wires and we had to restrain him just to keep the wires on. He is also in daycare and has a 2 yr old brother, so I was also afraid that someone else would pull the tube by accident. We couldnt even do a PH probe because he wouldnt leave it alone. For such a little guy, he sure is strong. I will definitely talk to the surgeon about the GJ tube. I havent done any research on that type of feeding tube, so I will do some so I will be a little better informed. I just found you on facebook and sent you a friend request.
Nov 23, 2009
mommato3
I want to be your friend too! LOL! Love me some facebook. Let us know what the outcome is. Jessica gave you some good advice on the GJ tube. Hugs and prayers.
Nov 23, 2009
johnniesnewmommy
Send me your facebook link and Ill friend you too!
Check with your
doctor first!