Thanks everyone for being so welcoming when I joined the boards last week.

Well, I wanted to update you on what's happening with our little Max. As I explained he has a GJ which he's had since end of June but it is frequently migrating up into his tummy and needing to be replaced. So we met with our gastroenterologist who recommends getting Max a J tube. He says the frequent displacement of the tube means the GJ isn't a great option for Max. Which we agree. Our GI doc says that any more xrays of Max's tummy and "he'll glow". So we are hoping to consult with our surgeon next week.

In the meantime we are feeding Max at a rate of 40 ml/hour. Since our target is 900ml/day of Peptamin Jr. this means he's on the pump all day long. He is vomiting less at this rate though he's not completely vomit-free. So we think the J tube is a good option.

Our GI says we would have both the Gtube and the J so that we could vent his tummy and also still have the G to transition to as Max's system matures.

But I am struggling with the idea of another surgery for Max. He's been through so much..the unfairness of it sometimes get me so down.

Anyway I know there are a bunch of you with experience with GJ's and J's...what do you think? Any advice or thoughts about getting the J tube placed?

My friend Julie has a son who had a G-tube done first, then they changed it to a GJ b/c he barfed so much, then b/c of it migrating they ended up doing a separate J-tube. Now he has the J-tube for feeding and G-tube for venting. He still barfs and gags and wretches a lot. Shae also still barfs with her J-tube as well, so it may not be a miracle cure for the barfing if that's what you are hoping for. I do know that J-tubes work a heck of a lot better than GJ tubes.

Julie's member name on here is gerdlingmom I believe if you want to send her a PM or email and get some specific thoughts from her on it. Otherwise, not really sure what to tell you. It's always so hard to know what the right decision is for our kids in these situations. And whatever decision we make, it seems we always second guess ourselves and wonder if we did the right thing. Mother's guilt...it's a wonderful thing. :roll:

The j-tube was the best decision we have made for Shae, even though she still barfs, if that helps you any.

Good luck and please keep us posted.

Thanks for your reply Roni I'll see if I can connect with Julie.

I'm pretty sure we're going to have to go with the separate J. Feeding Max continuously all day long at this slow rate is very difficult. He is so active right now hopping all over with his little bunny hop. If we can get it to 55ml/hr or so at least he could have a few hours break.

We don't expect the J to cure his puking. When the GJ is in the right place, he still vomits quite a bit of watery bile-like stuff and sometimes some of his food. He's also really wretchy too; we've had episodes of him vomitting old blood that our ped says is from burst vessels from all the wretching. But at least he is keeping his calories down. He's put on some good weight since the GJ was first put in. Still a tiny guy below 3rd percentile but at least we can't count his ribs now.

Thanks again Roni!
Vicky

Still not sure what to do. We met with our GI and are meeting with our surgeon next Thurs to get more info on the J. We met with our ped this past Wed and got her opinion which was that she thought it would be a good move to get the J placed since we were having so many migrations with the GJ. The thing is, since we've dropped the rate of the feeds, Max isn't vomitting as much food even though we think the tube has migrated (GI didn't want to "zap" him again to confirm which we agreed with). So I'm having trouble figuring out what to do. He isn't vomiting food at this rate (though still vomiting small amounts of stomach contents) but he is on the pump ALL DAY LONG. Which is really hard. He is very active right now. I think time off the pump is very important for his physical development. Also, even if he isn't vomiting I'm sure it isn't good to have a GJ coiled in his tummy right?

Still debating what to do....any advice?

Max is home from his J-tube surgery. It was done on Monday the 5th and we came home yesterday. He's doing pretty well but has had several episodes of EXTREMELY painful cramping. We went back to emergency today. They figure he is still adjusting to the full feeds post-op.

In general he is doing okay. He's hardly vomitted at all since the surgery. An he has pooped twice without any discomfort. Curiously, his obstruction during sleeping seems better too...

We're very tired. I'll try to put a post in the Updates forum when I get a chance.

Vicky

Vicky, I am glad to hear that things are going okay. I am sorry that he is having so much discomfort at this time. I was wondering if you have been able to increase his rate from previously? I do wish you luck and hope that all works out well.


Melanie

Thankyou. Max is doing better - not as crampy - though still having rough nights (as per usual). We are doing 40 ml/h when he is sleeping and 50 ml/h when he is awake. Our target is 900ml/day so this does still mean he is on the pump for most of the day. I'm going to stick to these rates for a week more or so and then slowly try to increase the rates. It would be so nice to be able to give him a break during the day.

Vicky

Sorry, I missed your earlier posts about going for the surgery and just found this update. Glad he is doing a little better now. I think 40 and 50mls an hour is terrific for his age and so soon after surgery. We slowly got Shae's rate up to 125mls an hour during the day and 95mls at night. She is now off the pump for about 3-4 hours a day. Don't worry too much about his development. It may slow down and get a little behind for awhile (Shae was very behind her peers until about a year ago) but he will catch up and eventually you'll never even be able to tell he was behind.

As for increasing the rate, just take it slow and he should adjust fine. I mean really slow. When we want to increase Shae's rate, we start with 1ml an hour increase per day. If she handles the 1ml an hour increase for 24 hours we go up again 1 ml again the next day. If she doesn't seem to tolerate the 1 ml an hour as well as you'd like wait a few more days until he does before increasing again.

Best of luck! Keep us posted!

Vicky, I was wondering what kind of pump Max is on presently? I do know that the pump size can make a big difference in what the child is able to do while on it.


Melanie

Hi there, Thanks so much for the posts. I haven't been on the boards much since his surgery. I did manage an update in the updates forum. But I just don't get on the computer much these days. Max is getting so mobile (YEY!!) In the last week he has started walking about 1-5 steps unassisted (I'm SOOO proud of him!) Anyway, with him being fed continuously, I am pretty much following him all day! So not much time to get on the boards.

Anyway, we have an Enteralite pump. Not the newer, smaller one that Becky and Daniel have but a slightly larger one. It's a great pump I think but Max isn't yet able to carry it himself of course, so during his waking hours someone is ALWAYS watching him and usually connected to him via the tube!

We have been struggling with Max being crampy many nights and our GI is switching us to Neocate to see if he tolerates it better. I have to order it next week.

In spite of rough nights (I know you all know what I mean) and his cramping, and gagging and vomitting - Max is the happiest little boy I know. He is doing pretty well otherwise and very busy with PT/OT/SLP and feeding therapy. Goodness.

I will try to keep you posted on how things are going with him. But it is REALLY tough to find the time. Often I pick naptime over computer time 'cause we're still so sleep deprived!

Hope you are all doing well.

- Vicky

Glad to hear he is doing so very well now post surgery! (sleep issues notwithstanding!)

It must be so hard to follow a wee fella around with a pump all day long. Wow. It is not like they get tired and decide Mommy needs a rest either... How wonderful that he is now walking unassisted though. You have to be so proud!

It is great that he is such a happy guy. My youngest is so very happy most of the time and it just light up my day when I hear his belly laugh.

I hear you on all the therapies! My days were running into each other for some time when I had so many involved. It made it hard to get other things done as these were such a priority. When things started to settle and Iain graduated from one program that had us hopping around so much I breathed a sigh of relief for sure. It was weird not having them around anymore but still it was refreshing. May you know that feeling in short order.

Thanks for updating.:iconbigg:

Hi Vicky -- I'm glad to hear Max is doing well and even starting to walk. That's such an exciting time!

Anyway, we have an Enteralite pump. Not the newer, smaller one that Becky and Daniel have but a slightly larger one. It's a great pump I think but Max isn't yet able to carry it himself of course, so during his waking hours someone is ALWAYS watching him and usually connected to him via the tube!

How funny that you remembered D's pump! Even though we've only been to D's feeding clinic once (for the eval), the OT there told another mom there about his cool little pump, and it turned out we know each other already, so she got the info from me and got one for her son, too!

Max might have the one that Shae has.

Congrats on the walking!!! About Max and carying the pump do you have a mini back pack for him so when he is strong enough he can? Emily has the same problems right now. They put her on neocate and that helped alot. I hope it helps Max. Some insurances cover neocate try if you can it can be pricey. I wish you the best of luck!! I understand the pump and walking it bites following that thing ALL day!!! Emily is also on 24 hrs a day and sometimes I think I would love to chuck it out the window. SHe is crawling everywhere and it gets caught everywhere and she pulls it out when it gets caught. I understand soooo much good luck!!!!! Enjoy your naps!!! Beth

Hi, thanks everyone.

Leigh, well once Max is walking well, our PT won't come as often as she has been (which is too bad 'cause she is GREAT) so that will be some time back for us. I can't wait till he doesn't need OT and SLP and IDP too!

Becky, I know it is funny that I remember your pump. I was so impressed with the photos you published on line and how cute the backpack was. We'll probably have to wait a bit before our insurance will cover a replacement pump. But the one we have now isn't too bad. Much better than the giant "portable" kangaroo pump!

Beth, yes we have an enteralite pump with a small backpack - but Max isn't ready to carry it himself yet. I can't wait till he can!!

We are lucky that the neocate is covered here. We qualified for a special provincial government program which helps pay for a lot of Max's medical supplies including special formulas. Thank goodness. I am hoping the Neocate helps with Max's crampiness at night. We could all use the rest!

Thanks everyone for your kind words and understanding!

Vicky