If only there were easy answers. I can't even imagine what that would be like. Turns out, it would be even greater if there were answers. Any answers would work at this point. It's exhausting living in this skin, the simplest things become work and the work becomes heavy. A simple trip to the park is quite an endeavor. We have to have the backpack, because it carries Bradley's spare button, his tube, and his vent cup and supplies. We keep diapers, wipes and extra clothes. Add to that, sterilized water for flushing his button. Lastly, I have all of his MRI's and all imaging on DVDs. Sometimes his Diazepam is in there, but usually I carry that in my tote bag. That one I have to have available at hand if necessary, I also carry his IPAD, in that tote too. Bradley can get overwhelmed by crowds and noise, his IPAD can help calm his world down. Sometimes Bradley won't eat when we are out, so his IPAD keeps him occupied so we can eat. And it allows Bradley to hide a bit and still eat. It's a busy IPAD. And surprisingly heavy once you put it an a heavy duty survivor case so it can survive Bradley! ;-).
Going to a hospital appointment has become an all day affair. You have to carry along extra of everything, especially the food side. He is just as likely to need four cans of Pediasure at the hospital as he is to want nothing. Or he'll decide he's not in the mood for his beloved Lemon pudding and the one day I don't bring it...good night! Let the panic ensue, mine not his! Well, at least a little bit on his part. We used to have meals where he wanted everything on my plate, now I'm ecstatic if he eats Lemon Pudding, diced peaches and a Fiber One Lemon Bar...on a great day, he'll go for two of these. And then some days, he'll astound me and jump into old favorites or eat salad or devour the turkey off my sandwich. I really don't mind. :-). Those are the best days, watching him trying it all, enjoying it all! Those days I see him bite, I see a dimpling of his cheek and I know he's chewing. And I see all these years of hard work, the tears from frustration and fear that he and I shared, I see the potential for a life without a g-tube. Too bad the docs don't see the same future. Bradley's had a Esophageal Motility Study that told us his Esophagus spasms... We knew that. And then Tuesday he had an Upper GI that told us there's something wrong in there and a surgeon has to do an EGD, there's thirty letters in this term so I'll just tell you it's a scope of his Esophagus (E), Gastro (G), and Duodenal (D) - get the idea? A surgeon has to do it, and the one that did Bradley's original wrap...he's doing this one too. I guess theoretically, you can go home again.
And so we are preparing for another surgical scope on Bradley, we have to consider the potential that the results will be life changing. If the test tells us what I am fairly certain we will be told, the surgeon will not be able, or willing, to try to correct the problem. That reads for Bradley to have an increase in tube feeding and a decrease in oral feeds. We are greatly concerned that Bradley's Fundoplication is slipping and sliding up and down on his Esophagus, and would explain why sometimes he chokes on his food. Overall, this does not bode well for him. There are only so many times that a Fundoplication wrap can be taken apart and re-wrapped...Bradley is on number three...with a second try only having a 75% chance of working well, a third and the odds drop to 50%, and well....the world gets dim from there.
So this is the Challenge that we are facing here in October. We're fighting the same fight on a new battlefield and we lack any of the secure ground we thought we knew. Bradley has always had his challenges, but he's still a pretty awesome kid. He's a fighter and we are so proud of how far he has come, which means we are loathe to have him start sliding backwards in any area. But this month, this is a game changing month for him...and I guess I am dragging you all along for the ride.
No comments:
Post a Comment