I don't know what I was thinking. Guess I was picturing feeding Noah after the Fundo and actually being able to relax, see him enjoy meals, and relaxing himself. Maybe leave the room for a few minutes without worrying something terrible is going to happen.
Not the case.
It's worse than before.
Now after a feed there are bouts of retching and gagging (2 of the 3 things he SHOULD NOT be doing). Then there's the coughing and sputtering. It's awful. Now we not only have to worry about aspiration, we have to worry about him damaging the procedure.
I am so disheartened. I'm afraid we made a HUGE mistake.
It's got to get better, right?
Thinking of you guys-you all are so strong. Noahs hanging in there, such a tough little buddy. You all hang in there too. Sending so many positive thoughts and energy your way. Love you guys-
ReplyDeleteLove,
Rob, Lily, and John
Our Noah struggled after the Nissen too... The only way he doesn't have tons of retching and gagging and vomiting is being fed with the g-tube on a feeding pump at a slow, continuous rate. It keeps his belly from ever being full and there is never "too much" to cause bloating, gagging, etc.
ReplyDeleteIs your Noah still able to vomit? Our Noah can still vomit if he really retches a lot (although the amount is MUCH smaller than before the Nissen). We had an upper GI and it did show that the Nissen was in tact and protecting him from aspiration from reflux, we just have to worry when he actually vomits some. Our surgeon did say that when they are able to throw up a small amount through the Nissen that it works as a release of sorts, and can protect them from tearing the procedure.
I am sorry you guys are struggling... I know it is very frustrating and disheartening.
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ReplyDeleteTears and consternation.
Love and hugs.
Jodi
Tricia - I'm so sorry. We all had very high hopes for this procedure and continue to hope that it does work and it gets better for you all. We are hugging you and as always sending much love.
ReplyDeleteCindy and Hans
I love you, T. I'm so, so sorry you & Todd & Noah have had to fight so hard for so long.
ReplyDeleteI am inspired by the last line in your intro, "This will be a story of triumph." Let's all keep believing. Be gentle with yourselves. Peace, Love & Prayers. Always.