GI Update: Decision Time
We met with The Littlest Apple’s GI specialist again this week.
At 35 months old, The Littlest Apple is 24 pounds, 34″ tall. He’s still not on the charts yet for weight (despite what the pediatrician told us incorrectly last week), but making progress especially given all of the hurdles we’ve faced with the NG tube.
The doctor wants to increase The Littlest Apple’s night feeds just a little, and we’re keeping him on the same formula, despite the increase in energy (which seems to just be from the calorie increase). His energy level has to max out eventually, right? I’m hoping we’ve reached that point, because, wow, some days really wear me out.
The doctor asked us whether we wanted to switch to a G-tube. Now that we know this method of feeding works, we have that option. The doctor can’t tell us with certainty how much longer we’ll be using tube feeds, but it will be at least another 3 months. Once The Littlest Apple reaches the desired weight/BMI, he’ll need to prove that he can eat enough orally to sustain his weight before we are completely done with the tube. It could take 6 months. It could take a year. It could take much longer, if his gastroparesis continues to be a problem. So it is completely up to us whether we want to make a switch, and we plan to make a decision in the next week. If we’re going to switch to a G-tube, we’d like to get it done before The Littlest Apple starts preschool in September.
Here are some factors we’re weighing…
Reasons to use G-tube:
- Better for long term use. No tape constantly irritating face. Can be used for several months or longer before it needs to be replaced.
- More “hidden”…you wouldn’t be able to tell he even had a tube with his shirt on. Right now we get LOTS of attention (and staring) and lots of questions when we’re out in public. The first appearance wouldn’t be that he is “sick” or “different.”
- Less likely to be pulled out (mostly a concern with other children, particularly the under 3 crowd who are very curious).
- No more monthly tube and tape changes (such misery for all involved!)
- NG tube irritates the nose
- NG tube in throat is an addition eating/swallowing hurdle. I’ve noticed The Littlest Apple (who has a strong gag reflex) gagging more frequently w/ the NG tube.
Reasons to keep using NG tube:
- Surgery needed to place the G-tube and the pain associated with recovery from surgery (a couple days in the hospital)
- We’ve FINALLY gotten comfortable using NG tube
- will our insurance (who won’t cover the formula b/c it isn’t his “sole source of nutrition”) even cover G-tube surgery? Would it be considered elective surgery? How much would THAT cost?
- A little bit bigger deal to replace g-tube (though Dr. said many parents are comfortable doing this on their own)
- Unsure how The Littlest Apple would handle an extra “button” on his tummy. Would he pick/pull at it or be protective of it?
This is SUCH a hard decision to make, especially not knowing how much longer we’ll need it. If we could say with certainty we would only need tube feeds for another 3 months, I’d stick with the NG tube. If we knew for sure it would be a year or more, I’d definitely want to switch to G-tube. Anything in between is a gray area for me, but I’m leaning strongly toward making the switch.
What would YOU do? I’d love to hear some opinions!
Wow, what a difficult decision. I think I would go with the surgery, but this is from someone who has absolutely no experience with this and I am basing this only on your pros and cons. I wish you the best with your decision.
Wow, I don’t envy your decision, Cara. I don’t really feel that comfortable giving my opinion, since I know nothing about this, but looking at your pros and cons it seems like the G-tube may be your best bet.
I wish I had insight to tell you what to do here but i know nothing. Avery is on the 3% of the growth chart and nothing like this has every come up cause we just think its from us being small. i do get worried everytime we go into the doctor cause i feel like i am doing something wrong even though i know its not me…so i am sure you feel that way also. All i know is i will be praying you all get clear decision on what you should do.
Thanks for the input, ladies. Obviously we’re going to do what is best for our family and our situation, and right now, I’m thinking that means a G-tube. I don’t think The Littlest Apple’s “tubey” (as he calls it), is going away anytime soon. It’s a little bit scary, it’s surgery on my baby, but I think that will be best for a long(er) term solution.
Hi Cara,
I used NG tube before and my friend who transit from NG to G has mixed comments. The G tube might not irritates his nose and throat but it cause her baby to have infection and has some skin grow around the button. The button is something her baby try to touch and pull, it can easily cause infection. Also, she has to put her baby in a stroller to sleep due to the tube is in his tummy and he can’t not flip and roll around otherwise, it disconnect and the milk goes all over the bed. Maybe you can join some g-tube forum before you make your final decision. It is a painful surgery.
Hope this help.
I think personally I would avoid surgery as infection is an issue and so is the general anethesia? I am also in a tough spot with Tyler’s teeth because despite our regular tooth brushing, no candy etc. he has severely decayed teeth. The dentist wants to put him under general in the hospital but we found one that will do it in the office but we can’t get him in for 3 weeks and its getting worse and worse. Anyhow, I was rambling on about this because I want to do all I can to keep him from being in the hospital and going all the way under.
I would say if he is ok with the tube now you may not want to make the change, but also I can’t imagine how it must feel to think people are judging him when you go out. It is such a tough choice but remember you are a wonderful mommy and doing what you feel is best for your family and your son! Hugs.
Cara,
I feel your pain and uncertainty. We finally made an apt. to see our G.I. specialist for Lilly because she hadn’t called back to tell us ANYTHING about what to expect now that she has truly been diagnosed with the Gastroparesis. When we went in to see her I got the impression that she was wondering why we were there. She told us that Gastroparesis is VERY common and that pretty much anyone with GERD probably has it, but that you don’t test for it until it actually starts to cause problems. I was a little surprised by this, because in my reading it DOESN’T seem to come across very common at all. Anyway, we had tried to go all natural and get her off the formula that had so much sugar, but that actually hurt Lilly more than it did her good as we found out at that apt. She had lost wt. AGAIN and was at her lowest that she has ever been. So…we went back to the formula and the duocal and were told that she needs to have at least 1000 calories a day. If she didn’t gain weight, then we were going to have to consider the NGT as well. She also referred us to some motility clinics but one is in Lousiana and the other in Ohio. We live in AZ., so this is proving to be a little difficult. Have you had luck with going to the motility clinics. Do you feel you have gotten more information from those specialists than just his regular G.I. doctor? Lilly IS getting the 1000 calories a day now, but hasn’t been able to make it past that 22 lb. mark. We have had to weigh her weekly and call in to the doctor’s office to let them know how she is doing. We also have a feeding therapist who is going to see her next week I think. I am an LPN and have worked with kids most of my career. I am very familiar with the NGT tubes as well as the GT’s. I just never thought I would have to consider this with one of my own children. Amazing how that puts a whole different spin on things. And you are right, if only we could know how much longer before they would gain the wt. to know for sure which is the best decision. I am nervous for what the future holds and sometimes wonder why God thought we were strong enough for this. I will pray that you guys can come to a decision that is best for all of you. Hang in there and stay strong. You are an amazing mom and I have been so encouraged by you. Thank you also for your transparency. 🙂
Hi Cara,
I’m Amy’s friend whose son was on the NG tube for a while due to the same problems. I check your blog once in a while to see how the little guy is doing. Sorry for the tough decisions you have to make. When I see pictures of the time Sean was on the tube, it just brings back all these memories of what we went through at that time and my heart totally goes out to you. I am not sure what the best decision is because 24 lbs at age 3 is pretty close to being “on the charts” and it might be for the WHO. On the other hand, I see the appeal of the G-tube because putting the NG tube in and changing the tape was such torture for us and for him. We are fortunate to have a bunch of great moms in our playgroups but when we were in public, I totally felt the stares of strangers. This was probably a lot in my head but I was always concerned they thought there was something wrong with him when I just want to explain this it is more for his weight and that he was not sick or something. Anyways, I am not sure there is a right decision but whichever way you go, don’t look back because you made the decision that you thought was right at the time and that’s all you can really do. My son is on the 3rd percentile (CDC) now though we are giving him a bottle before bed and one in the middle of the night (total calories: 700). He eats better but a lot less than other kids his age. We tried to drop the middle of the night bottle for fear of cavities but he would lose weight so we went back to it just to maintain his percentile. So do what you have to do. Good luck! PS Love the crafts you do with your son. I have a tub of toys in water in the freezer now so we will try that ice breaking activity tomorrow. I am just giddy thinking about his reaction when I show him the block of ice and hammer 🙂
Hey Cara,
One side note I have – I learnt from my Pedi and GI that if a person has Gastroparesis, it would be the J-tube. It will bypass the stomach so no food stays there forever and the person can still eat orally.