The result was not news I wanted. The scope said everything looked good! This is bad news because I wanted the scope to confirm what I've been saying. Even though he vomits every day his esophagus actually looked better than it did during his last scope! How is that possible? The nissen also looks intact, although he vomits freely through it like its not even there! But because it looks ok they aren't going to touch it. It's extremely frustrating listening for your son to vomit, and hope you catch it before he aspirates! Since I'm not getting any help, I'm thinking of ways I can help on my own! A cuffed trach may help prevent aspirations. I'm not sure if the doc wants him on zofran as a daily med. we don't want him to get used to it and than have it stop working! His GI keeps saying the vomiting may be neurological. If she says it again I'm going to lose it!
At our follow up appointment next week we are going to discuss a separate J tube. Both GI and the surgeon think its a good idea. While I was against it at first, the idea is growing on me. No more worrying about if the tube comes out having to replace it with radiology. We know he will always need the J, so lets get rid of the more complicated tube. Although the idea of another hole in my babies tummy, another tube for him to pull, is not ideal, we have to weigh the good against the bad! I can look at every tiny scar on his body and tell you exactly what it's from. Every chest tube, every picc line, every incision.The battle scars just confirm that my sweet Jax is the most amazing warrior ever!!
Just curious: I know your mama heart is telling you one thing but sometimes from your posts it seems you are quite stubborn to other points if view. You don't know everything. If things look good then perhaps what you thought IS IN FACT WRONG. It's okay to let go of what you've told yourself and explore the possibility that it could be something else after all. It may very well be neurological. I wish you the best in navigating this crazy road with your boy. But be receptive.
ReplyDeleteAnonymous, I understand what your saying to a point. But why not put your name with the comment? That really bugs me. Lets say it is neurological, my point isn't why he's vomiting, it's how we can help fix it so we don't end up aspirating. I am definitely open to new suggestions, one was the J tube! There are just some things that I know for a fact, and I know the vomiting with him, is not neurological! Any ideas the docs have of how to control it I'm open to, but no one is suggesting anything!
ReplyDeleteOh Lacey, you know Jaxson and his issues best (probably better than any Dr.). I admire the way you go with your heart and gut and fight for your son. Thinking of you sweet Mama!
ReplyDeleteI admire you! Jax is so lucky to have you. NO one knows him like you do. Give that boy a big hug. :)
ReplyDeleteShonda
wow i am surprised that his esophagus looks so good with all this...lets face it scopes are never fun...and i think the "hoping" things work is very stressful for all of you...I think sometimes doctors just do not know and then they just start putting the problems off to others instead of "fixing" the problem...Maddie GI doctor did not know how to "fix" Maddie and had to consult other surgeons and Maddie's original surgeon at birth to "fix" her esophagus...it was very intense and very rigid it was surgery every 3 weeks until...and the until was 4 months later when it finally worked...it was extreme but they had to consult, work together and admit they did not know...it was good...and to Anonymous I think it is important for advocates like Lacey to look at everything...she is very much the expert on Jax...there comes a time when doctors need to fix the issue at hand and admit they do not know...and refer to others to help...Lacey your amazing and strong!! smiles
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