Hi,
We are nearing 5 months since Hannah's surgery fundo and g-tube surgery. She throws up all the time now though.It started back in early February. We had a few episodes before that but this is when it became constant.
They checked her Tuesday and all was fine. Her stomach size looked good,she was emptying well and she didn't reflux.Her Fundo still looks great. They were going to do a g-j tube right then and there if something was up, and we were going to talk about other options.
She get's 900cc's of 30 cal elecare a day. Right now she is on the pump for about 20 hours a day. At night she can't handle more than 40cc's an hour, and during the day it is 50cc's an hour. She can only handle a bolus feed of 2oz's without throwing up.
She usually starts coughing and retching and then it just all comes up.
She is crawling now and trying to walk and the pump is holding her back. She can only get so far and we have to follow her all the time to make sure she doesn't get it caught.
The doctor's have no idea why she can't handle more volume and they have no idea's on how to help her, basically they are baffled at this point.
She also quit eating solids again once this started.
We have an appt. in April with a feeding clinic.
We are all a little baffled. Everyone thought for sure that the fundo had slipped or failed or she had developed a hernia or something.We weren't prepared for it all to look good.
Sorry this is long.
If anyone has any ideas, suggestions or any input we would appreciate it!!
Thanks!!
Kim

I don't have any suggestions as I have no experience with tube feeding..I just wanted to wish you luck at the feeding clinic, and I hope that you have some answers for your little one sonn, and relief:)

I am sorry to hear that you are still having so many problems at this point. I was wondering what kind of testing that they did on tues? The reason I ask is I was wondering if they did a gastric emptying study to show that the stomach was emptying normally?

My son retches alot and now has ended up with a gj button. His problems are that he has dge, and motility problems in the small intestines also. He had many studies done and we really didnt find the true problems out until he had the extensive motility studies done of the esophagus,stomach and small intestine done.

I do hope that the docs are able to find answers for you and soon.


Melanie

Hi Kim

Sorry to hear your daughter is not feeling well.. I know what your going thur our son has been having the same problems for the last 2-3 mths since he got the G-tube... THe drs have know idea what the problem is. At first they thought his fundo was giving away but its great but he still continues to gag and retch and the feedings are not going well.. We have tried ajusting vol and rate and nothing seems to be working.
Have they done a milk study to see if he is refluxing still or has dge? Jaxon is going for that tomorrow am. He had some other test done 2 weeks ago to check his fundo and it was fine, they too were going to put a G-J tube in but we never had to go that route after all..

Hoping you find answers soon!

Dana

PS - Have they tried a higher calerie lower vol to see if that helps? What about changing formula, maybe he stomach can't tolerate that formula? We too have tried all that with Jaxon but no luck...

Again Good Luck

Dana

Hi,
Thanks everyone!
She had another gastric emptying scan in January when we first started having more problems. It was perfect.They thought for sure that was the problem too.
The other day they injected dye through the tube to look at everything. It all looked good.
We have had a little luck increasing her rates the last 2 days.
We made it to 70cc's an hour for 500cc's during her day feed and 45cc's for 400cc's during her overnight feed.
We will try 80cc's tomorrow!
Right now she is on Elecare which they have said is the last of the line since we have done all the other formula's. She is also on 30cal formula. I don't think she could handle much more. I think the high calorie is part of the problem but we can't really lower it anymore or the volume would have to go up too much.Everything with her is always up and down. We were actually up to 5ozs over 30 minutes at one point and everything went bad.
I keep wondering about allergies, maybe to the formula itself. We had an appt. with the allergist but she didn't feel there was anything she could do and that it was a problem for someone else to figure out!
She also has problems with the g-button's too. We have never had one last more than 2 weeks.Her skin becomes extremely irritated(no matter what we put on it)she then starts leaking, and then the button's pop.She had an allergic reaction to the stitches after the surgery so I wonder sometimes if she is allergic to the button's and the irritation on the underside causes stomach upset.
That was the theory in December when she had problems. They removed the stitches during and endoscopy and said that they had caused irritation in her stomach.
We see genetics at the end of the month. She had testing done for metabolic disorders. Maybe they will have an idea!They had talked about a protein disorder when they did the testing.
They are also supposed to do genetic testing for mitochondrial problem's when we go back. They didn't want to do it all at once.
Sorry this is long again. It just seems like everytime we think we have things figured out we get another curve ball thrown at us.
I know you guy's understand. I wish our kids didn't have to go through this.
I remember when we first talked about the g-tube and how temporary they thought it would be.I am glad she had the surgery but I just wished we were closer to an exit plan!
Thank you for listening!!
Kim

I wish I had more answers for you but really cant help you. It sounds like your docs are trying to cover all the bases. I do hope that they are able to find some answers to all the problems and soon.

As for the formula it is the most elemental one out there. My son was on this for over a year. It is also non allergenic so chances of an allergy to it are very rare. Your dd sounds like my kids because she does nothing by the book. I do wish you luck and hope that things improve.


Melanie

Thanks Melanie!

Good news! We are making progress with the feeds. We were able to do 80cc's an hour yesterday and 50cc's at night.
We are going to try 90cc's today.
She hasn't thrown up in 2 days! The only problem we seem to encounter is a cough in the morning that almost triggers her to throw up.
If this works we are going to try and break up the feeds some.
Unfortunately she had a button get yanked out last night!
My oldest was going to put her in the playpen and accidently stepped on it as he picked her up.
Luckily it looked okay.
She had a little tear in the skin but we were able to put the button back in. We put some triple antibiotic cream on it and some stoma powder. It looks good today.
Boy we really have a love hate relationship with this g-tube!

sending you hugs and prayers. hope they figure something out to help Princess Hannah.














:hello2:

Hi Kim,
Hey have they tried Neocate?? Emily is a booger and so NOt text book either and she finally had to go to neocate she also had to do 30 plus a whole bunch of calorie boosters. I am so excited to hear that you were able to push the rate up that is so great!!!!! I am jealous! Emily is almost a year and still we can only get her to 37mls per hour. I ope your little one keeps improving and I wish you the best of luck with your appts. The button is not latex of any form is it. Some kiddos have latex allergy. (just a thought) Good luck!!!! I hate our g-tube about as much as you do!! HAHA the only reason I am laughing is because I hate it sooooo much!!! I feel like its our 4 child =) . Your in my prayers I understand! Beth