[UptownZoo]

Sigh. I'm so discouraged. A half dozen med changes in the past two months, countless hours spent encouraging Carter to eat, more calls with our (fabulous) developmental pediatrician than I can count, bloodwork to assess Carter's nutritional status, and Carter's weight is slipping, slowly, downward.

People in my life keep trying to make me feel better by saying "Oh, he's just meant to be small." Uh, yeah. Gaining NO weight from one's 4th birthday to 3 months before one's 7th birthday is just an indication that he's small.

: Sheesh, I get tired of well-meaning idiots.

I'm so tired and scared. We'll probably get the results of his recent bloodwork at the beginning of this week and that'll tell us a lot, but I'm scared. Carter doesn't look good at all.

 

[2boyzmama]

I know lots of kids have g-tubes on here, and the families have found them to be wonderful. Yet, as a mama of a kiddo who is riding the line constantly of needing/not needing one, I completely understand!!! I don't WANT him to have one, no matter how great/wonderful/easy it is!!!

 

[UptownZoo]

Quote:

Originally Posted by 2boyzmama I know lots of kids have g-tubes on here, and the families have found them to be wonderful. Yet, as a mama of a kiddo who is riding the line constantly of needing/not needing one, I completely understand!!! I don't WANT him to have one, no matter how great/wonderful/easy it is!!!

Yeah. I'm on the fence about it constantly. One day, I just want to see him bigger and stronger and to hell with the way it happens. Those days, I'm impatient with the GI docs who want us to try one more medicine, one more technique, a little more time, etc. Then the next day, I'm horrified at the thought of putting my little boy through surgery and facing all the risks of tube feeding. And some days I'm miserable at the thought of either giving him either manufactured formula with all its chemicals, or going to to all the trouble of making it myself.

But we're getting close to the point where the risks/hassles of getting a tube are not as great as the risks/hassles of living without one.

 

[irangel]

Quote:

Originally Posted by UptownZoo Then the next day, I'm horrified at the thought of putting my little boy through surgery and facing all the risks of tube feeding.

What exactly are you thinking the risks of tube feeding are? The surgery to insert the g-tube is not a difficult surgery and most kiddos do very well with it. As for tube feeding I really don't know what risks you're thinking of. My youngest has been tube fed all of her life and we've recently had to start TPN because like your son, no matter what we try her nutritional status is slipping and I'm not willing to stand by and watch her suffer (neither are her doctors) knowing that there's something that can be done to prevent it.

It sounds like you guys have tried for a long time to avoid getting a tube. I'm sorry that this has been such an ongoing struggle. I hope that your blood work makes it clear what your next move should be.

 

[gsmom]

I am sorry that you are here. We were there in August and had to make a decision to either get a g-tube or let Reese die. We fought so hard against a g-tube knowing that it would medicalize things so much more than we ever wanted it to. Mitochondrial disease is life limiting and our goal at that time was a natural death for him and a g-tube did not fit into that picture. What I learned was that Reese's life is not black and white, it is all sorts of shades of gray. For us (and I do not say these things to reiterate that it is "easy." Every time I hook Reese up to his tube feeding, there is a twinge of sadness), getting a tube has let us do things without worrying about how many calories he's getting or if he's hydrated. It has increased our quality of life and we can in turn improve his. This decision did not come easily. It has made things "easier," but "easier" did not come without sacrifice and grief. Feeding him orally was the ONE normal thing we had. Since we've gotten the tube and been well nourished, he's been happier and smiling more at us. For us, if we hadn't gotten it, we never would have had those memories, so the benefits have far outweighed the disadvantages that we experience now and the difficult decisions we will have to make in the future because of his g-tube and there will be many.

It is not an easy fix. I hope that the blood work and testing will give you some good information so you can make a decision with peace and knowing that it is the best decision you can make. There are no rights or wrongs when you have kids with stuff. Just "best" decisions you can make with the information that you have at the moment.

You did then what you knew how to do. When you knew better, you did better. Maya Angelou

 

[MotherWhimsey]

The time before you do it is much much harder than actually doing it or having one. The dread and the feeling of hating the fact that he needs one gives way very quickly to the relief of not having to worry about eating or anything like that. I know that doesn't help a lot right now cause you're still in the really sucky part, but just know that it does get better really fast.

s

 

[pixiekisses]

Quote:

Originally Posted by MotherWhimsey The time before you do it is much much harder than actually doing it or having one. The dread and the feeling of hating the fact that he needs one gives way very quickly to the relief of not having to worry about eating or anything like that. I know that doesn't help a lot right now cause you're still in the really sucky part, but just know that it does get better really fast. s

Yeah, what MotherWhimsey said.

(And irangel, I dunno what risks you are thinking of either.)

 

[UptownZoo]

Thanks, everyone, for your kind words. It's so helpful to hear from folks who have been here!

As for the risks I'm concerned about, they're mostly emotional/social. Most of Carter's problems aren't physical but are of the SPD/OCD/ADHD/acute anxiety sort. Having a tube will likely be very difficult for him. Also, like gsmom, I hate further medicalizing his life. My biggest fear, though, is that he'll become dependent on the tube beyond its medical necessity and will refuse to eat even more, knowing that we'll just pour more formula right in. Then we'll have an even bigger struggle when it's time to wean him from the tube!

But all that said, today is a day when I wish we already had a tube. It's nearly 9 and he's still sleeping, something he only does when he's sick or when his weight dips low enough that his energy is really low (He's an up-by-7-hit-the-ground-running kind of kid when he feels well.). We're missing church again, something we've done far more often than we'd like in the past 3 months, because he needs to rest.

 

[Momily]

My son had a tube from 9 months to 3 years due to aspiration -- maybe on the swallow, and definitely on reflux. The decision to put in a tube was difficulty, and at the same time really easy. We saw so many specialists, and most of them were against the tube, but their other option was to just wait and see, and looking at my little one I knew it wasn't an option.

So, we did the tube, and I worried that he'd forget how to eat (my son had great oral motor skills, except for at the tale end of the swallow. He always enjoyed eating, but once he got the tube he wasn't allowed to eat by mouth.), or that he wouldn't learn how to talk without the oral motor practice of eating. I worried that, in my school district where school nurses are few and far between, that he'd be forced into an inappropriate school placement. I worried that something would go wrong with during the surgery (his laryngo/tracheomalacia and the condition of his lungs made that more likely).

In retrospect it was 100% the right decision. Within weeks he was able to sit and roll and concentrate on growing and developing. Within months we were beginning to wean off the nastiest of the medications, and by the time he was 2 it was clear that, for us, calming his breathing and stopping the damage to his upper airway was enough to let him learn to coordinate his swallow, and he was able to eat a variety of textures.

He's 10, tube free, and doing well.

Good luck, I know it's a hard decision, but so many people will tell you it was the right one for them.

 

[sbgrace]

I hope the final decision brings peace with it/that you know whatever you decide is the right thing.