We put Parker on the scale today and hoped for the best.
We were disappointed to say the least. He is down to 23.5 which is way below where he needs to be. We’ve been working on trying to get this kid up at least .5 of a pound for the last who knows how long.
His g-tube is leaking significant amounts. We placed a new tube yesterday hoping to solve the problem. But it is still leaking. Leaking enough to soak his shirt and the top of his diaper.
We put the jet fuel in but it simply streams out from around his g-tube stoma.
I have a call into PCMC, but most likely won’t hear back until tomorrow evening.
Anyone with any g-tube experience?
My neighbor brought her sweet little guy over to meet Parker today. Just a quick ‘how do ya do’ on our back porch. I was struck by the difference between her little guy and Parker. At over a year younger than Parker this cutie is chunky, plump and tan.
I couldn’t help but notice how unhealthy Parker looked in comparison.
So, we are asking for prayers today. Our Brave Hero has a surgery this month, next month and then the month after he has his MAJOR surgery, which is the second part of his pull-through.
Specifically, we are asking for help in solving his g-tube issues. Help in gaining weight. And help in just Parker’s overall health.
And the wisdom to know how to pay for it all.
You know. All the usual stuff.
Oh how I wish I could do something to help you. I am so sorry and feel so helpless. I love Parker so much and pray every day for him and for your family.
Love and Hugs,
Amy
Amy,
Honestly? Prayers are what we are so incredibly grateful for. I believe in the power of prayer. Totally.
I pray for our brave hero and all of you every night. I so wish there was more that I could do. Give Parker a hug and kiss from Madison and I please! Hugs Tammy!
Tammy,
Izzy had a g-tube for a while, but we didn’t have much leaking… so I don’t have anything to offer… except a lot of prayer. I’m sorry you are feeling bummed. I’m praying for you and for Parker for his g-tube issues, his weight, and his overall health.
(((hugs))))
annie
Hugs and prayers!!!!
Maybe he needs a bigger tube to help seal the hole better. I wish I could help more but our g-tube experience was very limited. Evan pulled it out for good before he had even had it a year and before that he was an NG tube baby.
I will pray that he gains weight. I know how frustrating it can be to have a scrawny little kid that really needs some meat on his bones. Hang in there.
First,the g-tube.When ever Zoey’s has leaked we knew that that was an indication of it needing to be changed out so since you tried that I would guess maybe he needs to be fitted for a new size. Even though he hasn’t gained much weight he still might need a larger size. Zoey weighs 17 pounds and wears a 1.0 in a mickey.Same size since she was 9 weeks and had it placed.Sorry that’s about my only suggestion.Now,as far as prayers ….. you all are in our constant prayers and we will kick them up a notch to accommodate all the extra stuff going on in the brave little hero’s life!!
Tammy,
I think it sounds like he needs a bigger tube, too. Can you get a larger size? Is the balloon inflated appropriately? Because if it isn’t, the hole isn’t properly sealed. Any time Danny’s was leaking, there wasn’t enough water in the balloon. It’s something to check. If that isn’t the problem, then he probably needs a larger tube…. which is unfortunately rather expensive.
Christa
Bummer! He looks like he’s doing so well in the photos you post that it’s hard to imagine otherwise. Praying you get this resolved . . .
I will be thinking of you and Parker. Sending lots of positive thoughts your way!!
((Hugs))
~Laurie
Sorry to hear of your disappointing news and hope you get an answer to the g tube issue quickly. Blessings to you and Parker.
I’m so sorry, Tammy, and I really wish I was there to help you. I can offer my thoughts and prayers though, and I send a multitude up on a daily basis. I know what you mean regarding the comparison thing. Elliot too is down (a couple of POUNDS). It is terrible. Isaac is our plump little cherub, nearly walking, and literally “running” circles around Elliot, who is content just sitting and playing with my slipper for hours. It is hard to watch. I knew the day would come soon when he surpassed his brother; I just didn’t think it would happen so fast.
I think of you often and again, wish that there was more that I could do to help. I may be picking your brain soon – Elliot keeps loosing weight and will not eat. A lot of evaluations are coming up.
Sorry – I’m off topic and merely wanted to comment to tell you how much I admire your fortitude!
Hug your Parker boy for me. I love him.
I’ve sent up a prayer for Parker! Wish I had anything to offer about the g-tube, but I don’t.
Just know that I’m always thinking of you and Parker
Tammy – not much of info on the G-Tube, as far as prayers go, I am sending tons to Heaven and I am sharing his story to get more prayers for him and your family.
As far as plumping him up, depends on the supplements and feedings, maybe some need to be changed to add some more calories and nutrients. Bodies change so much that sometimes a change in the feedings needs to be adjusted but that wouldn’t work much until you get the g-tube fixed though – but just in case my 2 cents count – I think it sounds like he needs a larger size tubing.
Good luck nad God bless you and your family – my prayers are with you.
Krystal
Tammy,
So sorry for the bad news. I’m guessing like the others that his tube is either the wrong size (too small) or it doesn’t have enough water in the balloon. I know that when they placed Samuel’s button, they only put 5 cc’s in the balloon, but I increased that to 7 or 8 cc’s based on reading the directions for that particular button myself. Samuel’s does not leak, at all. We don’t even worry about gauze or anything around it and only clean it about once a week because there just isn’t any leakage there. It’s an amt mini, I think.
As far as gaining weight, I have to give Samuel an extra 500 calories per day (on top of his already 1200 calories) for at least a few weeks to get him to gain anything at all. (He weighs about 35 lbs.) We have worked up what he can handle at night to 90 cc’s an hour over the 8-9 hours he sleeps. That’s the only way I can get the extra calories in. We do lots of butter, omega 3 oil, cream, coconut oil, cottage cheese, eggs, peanut butter and whatever else fattening I can think of to mix with his formula. The nutritionalist always whines that it’s too much fat. But the kid was skin and bones before, so I just ignore it for those few weeks of “fattening him up”.
Hope something I said helps
.
Teresa
More prayers for the little guy. I’m so sorry he has to go through all of this.
My granddaughter had a g-tube for 5 years. She finally had it removed 1 1/2 years ago. Her tube always leaked. They tried different sizes , sometimes a larger one worked for a while, but it would always leaked. The more active she got she would bump it and just normal playing made it leak. The only thing that Sarah found to help was she bought 2″inch gauze pads and would cut a “y” in it and slip it around the tube , then tape it so it would stay on. Just tape the gauze , don’t tape to the skin. It didn’t help stop the leakage but it helped to keep her shirt dry. We would have to change the pad several times a day. Sometimes it still leaked and would stain her shirt. Also Katelyn’s skin would get irritated, red and sore . Over a period of time , granulation tissue would form around the hole and Sarah would have to take her to have that burnt off with silver nitrate. It would get better but the tissue always reformed. Not everyone has this problem. The doctor told Sarah there wasn’t much they could do about the leakage. Katelyn had it for 5 years. Once she started eating good, the doctors would not take it out for at least one year to make she sure she didn’t lose weight. We also had to teach her to take her medicine by mouth. Most g-tubes will grow shut on their own when you remove it. Katelyn had hers for so long that she had to have surgery to close the hole. She now is g-tube free and eats very well. Sarah would never let her have white shirts because of the stains from the tube. She always had dark shirts because they would stain so bad and she couldn’t afford to keep buying new ones. The first thing I did when she had her surgery was buy her a pretty white blouse. I don’t know if this help much , but this was our experience with a g-tube.
Isn’t that funny that it’s so hard for me to LOSE weight and it’s equally as hard for little Parker to GAIN weight. If only we could just trade. He could take 10 pounds from me and I wouldn’t even miss it. I hope you can get things fixed up, and we will keep him in our prayers.
I love you Tammy
((((HUGS))) My prayers wont stop, that is a promise 
Girl… I’m sorry. You’re in my prayers!! ((hugs))
Hugs and extra prayers from us.
Tammy,
When Brooke was young, even younger than Parker, she had trouble gaining weight. In time that issue took care of itself. Weight is no longer a problem (she’s 10 now and average weight). I would consult a dietician about his formula and discuss the problem with her. Brooke has beneprotein supplements added to each feeding (she eats pediasure). What formula is Parker on?
As for the tube leakage, I agree with the others that there could be a size issue. I have also had trouble with certain brands before. Is it leaking around the site or through the top of the button or both? It may be that his balloon needs to be a little overinflated (more than the usual 5cc) to get a better fit. In our case, Brooke’s balloon has to be underinflated because it’s too tight and rubs, causing irritation.
hang in there . . .
No words of advice about the G Tube, but know we’re praying for you…always. You and Parker are our brave heroes.
((((Hugs)))))
Prayers and love, always.
Sending up lots of prayers for Parker and your family
You and Parker have my prayers, too.
I don’t have any personal experience with G-tubes, but as I’ve been traveling across the blogosphere, I came across this site:
http://www.reflux.darshani.com/
She has had a lot of years experience with several different types, and has some suggestions that may apply.
Or not.
Big hugs to you and Parker.