Our 11 month old (actual, 7.5 month adjusted) son is scheduled to have a fundo placed in the next couple of weeks (will get the official date tomorrow morning). His surgeon will be doing the fundo open and I am wondering how the recovery is going to be for a infant who just started crawling/sitting/pulling-up? Eli has made HUGE strides in PT and OT in the past week after being told 3 weeks ago, he "most likely had CP". I hate to see him regress when these new skills were worked so hard for but I don't see how he can NOT regress.

I guess you guys will need a little background info as well on how we arrived at "fundo-time". Eli was born at 25 weeks last June and we found out he was aspirating on all thicknesses when he was 3 months old (two weeks into bottle feeding). We tried to hold off on any interventions besides medications, specifically Pepcid, Reglan, and Prevacid, and thickening his breastmilk to just over honey consistancy for 5 months. Then at 8 months he was still aspirating on the over honey consistancy and his lung damage had gotten so bad we could hear him wheezing from upstairs so we once again tried to avoid the fundo by placing a GJ tube and moving to 24hr/day continuous Jtube feedings. This has been great for his aspiration of liquids and for his lungs to heal and grow a bit BUT we still are aspirating solids while refluxing and we have had negative weight gain since the placement. The GI, pulmo, and surgeon all agree that we have exhausted all other possible options and that we now need the fundo.

So, after rambling on for way too long, can anyone tell me about their experiences with open fundos and recoveries??? I'm a nursing student and work with lots of kids with fundos but we all know it's different when it's our own kiddo. I'm looking forward to getting rid of the terribly long PEG/J tube and moving to a Mic-key for his feeding tube though!

Thanks in advance for your help. Feel free to check out Eli's website. There are tons of pictures and I journal quite frequently on it.

Hi there! I have an Eli too, he is my gerdling who has had the fundo. Wow, it sounds like you guys have been through alot! So, you have worked with fundo kids? Then you will know that you will be trading aspiration for gagging, swallowing issues, feeding issues, gas bloat, tummy aches, and possible dumping sydrome?? Those are all givens and there are many other complications that can arise.

Anyhow, it does sound like you guys are trying everything. Has your eli had an emptying scan? Do not have a fundo without one!!!!

And, I can't help you with what to expect or recovery because we had ours done laproscopically at UCLA so the recovery will be different, we also had our Elis emptying corrected at the same time. I wish you guys the best and please post and give updates and ask any questions you have. We can help you during recovery and "what to expect" questions :hello2:

Kellie,
Hi and welcome! My daughter has had 2 fundos but both were laproscopic. The surgeon had prepped us for a possible open during her 2nd due to scar tissue build up, but he was successfully able to perform it laprscopically. He said at the time that the main difference is recovery time. It is clearly much longer for an open fundo. He said the recovery is more painful and that the risk of some side effects increase. The biggest increase is the risk for bowel obstruction at any time after the surgery. This is a life long risk. The risk of this laproscopically is like .1 percent, and for open is much much higher although I dont remember the percentage. Open does have a higher success rate in terms of long term success and less chance of reherniations.

Did the surgeon say why he preferred open for your son?

You know I generally am against fundos now most of the time, but I must confess that it sounds like you have done everything possible and that it is still needed! I am sorry that the other interventions you have tried have been not completely successful. I hope this works well for your son and that "the given" new set of issues will not be so bad for him.

I would imagine that with a tube, the gas bloat may not be an issue; and with full time tube feeds, dysphagia, gagging, and feeding problems would not be an issue as well. Just know that these always occur at some level and that if you ever had any hopes of him taking anything by mouth, this would really effect his level of success. Not trying to talk you out of it, just wanting you to be informed. We were not so informed. My daughter has significant trouble swallowing, had dumping syndrome, gas bloat and all the other things Erin said. We didnt expect it as the docs here only focused on their high success rate. They didnt thoroughly counsel on what to expect and di not help us after when the "unexpected" occurred.

Let us know how it goes!

Sam's fundo was open and his recovery was a bit slow, but most likely complicated by other medical problems. It has been almost a year (July), and he is doing great with his reflux. Still G-tube fed 100%. He is very hypotonic and still has swallowing problems.

the first few days were the worst. I think having an epidural for pain control helped a lot. He was in the hospital almost 2 weeks post-op---but that is on the long side.

I would say in the past 3 months he has really recovered fully---he is finally sleeping well and is generally happier.

good luck--I would be glad to answer more questions if you want to PM me

I have three kids that have had fundos all were done laposcopically. My one child had a second one done and it was done open. The recovery for the open was longer than his lapo. If I had to do over I would have had all my childrens done open because the surgeon can actually see what he is doing and feeling the procedure as he does it. The surgery itself is shorter but as I said the recovery is longer.

I dont have specific answers for you about what your child will be like because my son was older when he had his. I do wish you luck and hope that things go well for you.


Melanie

Hello My son Noah has had 3 of his 4 fundo's preformed as open procedures. I think you'll rleally be suprised how well he will do. Be sure to discuss pain control with the surgeon ahead of time. I'm sure at his young age he'll be up and moving around before you know it. Kids are very resiliant and they all are very unique as well. Some kids will be talking and moving by the next day, some might just be besdies themselves with discomfort. It also will have alot to do with how you handle it all. I know Noah did better for the times we were really positive. Good luck !!!

My son had his open fundo done when he was 5-1/2 mos old. He got morphine for the pain for the first 2 days and then tyleonol as needed. He was home in 6 days and back to his normal self. Granted, at that time, he didn't do much--no rolling over, etc. He has had some complications post-fundo though and is now on 21 hr/day continuous drip due to retching & not tolerating bolus feeds.

It's such a hard decision, but it seems like you have tried everything else. I wish you the best of luck.

Thanks so much for all of your support. I'm sorry it took me so long to get back to this post. I'm finishing up my third year in nursing school right now and we have two weeks left in the quarter. They are sending Eli for a gastric emptying scan on Tuesday. He hasn't actually thrown up much since they switched him to continuous J feeds at the end of February (probably 5-8 times total) but on Wednesday he had a 4oz jar of squash at 3:45pm and then at 8pm he promptly thre up the same jar of squash. I'm pretty sure that his scan will come back delayed and they will do a pyloroplasty at the same time as the Nissen on Wednesday.

For the kids that had a pyloroplasty on top of their fundo, did it increase their stay in the hospital? Our surgeon originally told us to expect 4 days at Childrens but we haven't been able to ask him if a pyloroplasty would increase the inpatient time. I hate that we have come to this surgery but we have tried all other options and I just want our little guy to start feeling better and GROWING!

It can increase your stay about 2 days, but if he is doing well he will probably be sent home, and hopefully he will be doing well! I feel much better knowing your getting the scan done. Please let us know what the scan says and keep us updated on dates and such. Ask away if you have any more questions.

We understand about just wanting to help your baby feel better and grow :wink: