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I posted this under another post, but it may also be helpful to you. I know it is more about the G-tube but I talk about the fundo a little also. I am very thankful for the fundo, it has really made a difference for the better in Samantha’s life. BTW Samantha can burp also (although she does not very often) Hope this helps!
The wonderful thing
about the G-tube is you KNOW that you can keep them hydrated. Samantha
is to the point now that she only gets her tube feeds at night, during
the day she eats by mouth. For the first probably 4 months after
surgery, she was mostly tube fed. It just seemed to “click” with her
one day that eating did not make her hurt. She had some rough spots
after the surgery, she could only handle small feeds at first (the
fundo makes the stomach smaller) she did retch some if she got too full
and she had quite a bit of post op swelling that would not allow her to
take food by mouth (but it did resolve right at 6 weeks like they said
it would) The G-tube has made Samantha be no longer FTT and she has
been FTT most of her life. She will have her Mic-Key for quite a while
more, as she still relies on the night feeds to keep her growing. The
nice thing is when I lay her down at night, I do not have to worry
about her aspirating on her reflux (which she was doing pre-fundo) She
does not constantly act like she is in pain. I do not have to hear
that “reflux noise” over and over and over. She is a much happier
child now and I know if she does go on a feeding stike, I have a way to
keep her from getting dehydrated. After multiple hospitilizations for
just that, I am very thankful for the G-tube.I have a
carepage that I keep people up to date on Samantha’s care and
progress. In it I posted about the time right before and after her
fundo. I actually started it in August of last year when she was
diagnosed with cancer and I keep it up. If you want to read about her
fundo time it was in October when she had her surgery. It might give
you a little insight (keep in mind I was a little frazzled when I wrote
the updates) The link is in my signature. Also please feel free to
email me if you have anymore ?s as to what to expect, I would be happy
to answer any questions.
My nephew had seizures i think around 3 months old. They put him on lots of different medicines and not much really helped and he ended up with developmental delays. He has feeding issues also. He is now 12 months old and his seizures have slowed down and he sees a physical therapist 2 times a week. I just saw a post on her care pages that he is no longer developmentally delayed and the dr thinks he will have seizures for the rest of his life but they are controlled with the right medicine now.
I will be praying that your story will be similar and Hunter will have no problems as he gets older. Isaac and I are sending you big hugs!
Hi Dawn,
(((HUGS))) I got choked up reading your post & hearing all you are going through. I’m glad the docs are finally taking notice & willing to help Hunter.
Very important question: I’m assuming Hunter sees a neurologist for the seizures. What labs has he had run? Before the GI doc would do the fundo, he wanted to make sure the neuro had run some specific labs (organic acids was one, cannot remember the other–sorry). Anyway, the tests would lead more to a metabolic disorder. All of Emma’s labs had come back negative, so he was ok doing the fundo. IF they were positive, we’d first attempt to treat the metabolic issue, which would probably resolve or help the reflux. The fear was if Emma had a metabolic disorder, that sever wretching would result from the fundo.
On the flip side of that, I’ve gotten to know a few other parents over the past year whose children are developmentally delayed and/or have neurological disorders, the majority of them DO have fundos & have done well with them. Emma does wretch (probably more than the average fundo), but we have found that Prevacid has helped some with that. Emma is also able to vomit past the fundo (whe she had rotavirus), docs have deemed it a ‘perfect fundo’ b/c it is intact, but allows her stomach to empty if need be. We do keep phergren on hand to help with her wretching when she is sick. Emma does not burp, so we use the mic-key to help her vent her tummy of air.
In that regard, I would advise the mic-key as well. Emma required a feeding tube b/c of her health problems. The GI said he would NOT do an NG tube b/c of her reflux & sensory issues. He said the irritation of an NG can worsen those 2 things, & a lot of times make any food aversions worse. Or create a food aversion. The add’l benefit of the gtube is that you are able to vent the tummy (which helps with the wretching & of course gas, especially after crying, etc.), which you cannot do with an ng.
The gtube has been a blessing for us, we know Emma is well hydrated & she gets ALL her calories (she is finally chubby!). Additionally, we know each & everyday she receives ALL of her medicine (no fear of her spitting it out, etc.). She was unable to eat orally for 1 month post-op, then following a video swallow that showed her aspiration had improved, she started foods again. It has been a challenge, but I think that too is specific to Emma. She has always had issues with eating & oral aversions. Most kiddos do just fine post-op when it comes to eating again, whether they have the gtube or not.
If they are considering the ng tube & feel Hunter needs it (why did they feel he needed it?), I would ask about a gtube instead. If his growth has been slow, has suffered by dehydration with his rotavirus or other illnesses, or has a hard time taking his meds, it may be easier to just do the gtube now with the fundo. I’m not saying he needs it for sure right now OR that he will for sure need one in the future, but there is a high likelihood, based on his seizures & developmental delay.
Please let me know if you have any more questions. The fundo has been great for us, knowing Emma is not refluxing & aspirating. I pray all goes well & that Hunter’s seizures can get under control with the medicine. TAKE CARE.
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