October 12, 2017
We like to give the world the positive view of life with Bradley, we like to encourage how our life is really not that different from everyone else's. We like to show the side of our life of raising two beautiful daughters and one beautiful son. We have all that, we have everything really, we are Blessed. That's the story we like to tell, and once in a while we have to share the rest of it.
With Bradley there are times we share the rest of it, there are times we like to let those that are Bradley fans and our biggest supporters know what's happening with Bradley.
Bradley has a pretty bad reflux, enough that he has times that he will gag and retch because of his reflux. This has been happening quite a bit, so with the realization that every time he refluxes he sends acid up his esophagus which makes him risk the potential of damage, we had to go talk to a surgeon at UCLA to determine what our options will be for Bradley. His suggestion was to go for an Endoscopy to see what we are looking at in his esophagus. If he showed damage we would be heading in immediately, buy a little time if mild to moderate damage, and if things look okay, then hopefully find a plan D that would avoid surgery.
Bradley was awake before we finished talking to his doctor, he had a lot to say. We were incredibly relieved to see that he didn't have anything more than mild damage. We were incredibly baffled to learn that when Bradley had to have his Fundoplication replaced, or the Diaphram Hernia repair...somewhere, in the midst of all that work, somehow a small pocket was created around the edge of his Fundoplication. So that means: when he eats, or drinks, or when his reflux starts kicking in, material gets caught in that pocket. As a result, he will have moments when his stomach will suddenly contract, and then the material in that pocket will expel and flow up into his Esophagus. There is no way he can be ready to handle the sudden flow into his esophagus. To make it worse, his esophagus works in a straight line without the cylindrical flow south like most of us. He has a Fundoplication because his esophageal sphincter didn't work correctly. When he needed it open to let food down, it would close and food would fly up and out, giving him no calories to absorb. When he needed it to close after the food went down, it wouldn't and food would fly back up with acid. The Fundoplication was our only chance of keeping him here. Unfortunately, the pressure of the stomach wrapped around the esophagus makes for too much pressure at times and makes him very susceptible to hernias. Hiatal hernias cause the reflux to worsen. He has a Hiatal hernia now, has for almost two years. We found it after a horrible bout of retching where he sent fluid into his lungs and immediately starting coughing. It wasn't the respiratory cough, it was wet and unproductive. I immediately called his Doctor who told me to bring him in the next day if he started a fever. One high fever and seizure because of it later, we were in the X-ray room getting a chest x-ray the next day to determine he had Aspiration Pneumonia, our quick attack kept him out of the hospital. But set us on this path we're on now.
Every time his Fundoplication has to be re-wrapped surgically, we have a 25 % less chance of it working successfully. 100% when it was initially done, but then he had a horrendous Hiatal hernia tear through it three months later, he couldn't eat at all and we had to go in again. Take two, 75% chance, and it worked pretty well. We had to work some dilatations to give him some room to swallow, and finally started to improve. Now this hiatal is hanging over our heads. We know that if they go to fix the hernia, it has to be a complete redo of his Fundoplication and we are looking at a 50/50 chance with it working. As if that isn't frightening enough, we are looking at the realization that this might be it, there aren't further chances. Surgeons are only willing to go back in one more time. If we do this and then he has another hernia our options for him will be a complete change in his life. Options are things like a tube that would go right into his digestive tract and avoid his stomach, a bypass where his stomach is taken out of the equation completely. So my son that has been fighting to learn how to eat as much as possible, would suddenly no longer be eating anything, or barely anything. He would be back on tube feedings and we would be trying to get his tolerance up to a level that would allow for him to get what he needs a lot quicker than what he can barely tolerate now.
Things like night feedings, possible daytime feedings with Bradley wearing a backpack to carry his feeding machine, not eating his favorite things, not trying any of the wonderful treats that he tries while we are out and about...all of that and more. The kind of life changes that would happen for Bradley; to Bradley, are beyond our comprehension right now. We are looking at the lifespan of an almost eight year old boy...if he has to have surgery in the next year, we can try to limp along with what they give us...a 50/50 shot that we can get another few years, to lots of years...a total crapshoot as to what he would get before he got hit with another hernia and the inevitable changes to his life that would be permanent.
Somehow, we have moved from two months out of surgery and his GI smiling at me and saying: "Maybe in a year we'll be weaning him off his button, he looks so much better in person than he does on paper." To today. Now it is, we'll look at his esophagus once a year to make sure his reflux isn't causing damage to cells and turning them cancerous. What a difference a few years makes.
Today we are trying a new medication to provide longer coverage for his reflux. We are attempting to keep him as healthy as we can. But every time he has a retching episode and they last longer each time, we hold our breath and wait. Today, we know that he is only two bouts of Aspiration Pneumonia away from a surgery that we cannot avoid. And we sit here with this looming realization that he has a hard time with the Pneumonia in the first place, coming through it all right is a task in itself. But coming through it twice is as much a gamble for him as him coming through this next surgery. With so many uncertainties around Bradley, it is strictly self preservation alone that keeps us trying to keep the positive in the front of our thoughts.
It took me months before I could write about this, to let our Bradley lovers know what is happening to him, with him. I don't live in denial, but I live with a fear that explodes every time I have to hold him when he's unable to breath as he tries to work through the retching and calm it all down again. I have to sweat through the ensuing fever that elevates just enough to keep me up at night, watching and waiting, wondering if his body will fight off the little bit he sent into his lungs or if we're looking at our first bout of Aspiration pneumonia. And then he'll fight enough, his temp will drop again and he'll do better. On the new reflux medication he hasn't had the month long cough as stuff in his esophagus doesn't clear out; instead, he's been able to clear a little quicker. The fight continues.
His medical world is a complicated one, one that is so much bigger than we can truly comprehend, let alone ask for any others to comprehend. And sometimes we can keep it on the back burner in order to keep our life on an even keel. We try to keep things positive around here, and sometimes it might seem that we're hiding the difficulties. No, more like trying to keep the faith and keep things in the moment. We know that coming down the road is an extensive surgery for our son, this time there is no Orthoscopic surgery, he will be have to be opened up and so much scar tissue will have to be removed we know we are looking at a long stay at the hospital, so much pain for him...and fevers, the dreaded fevers that will come to fight the surgical cuts...and those moments, those long moments as we watch him fight and will him to get better and know that he will have to really fight or the worst could come.
We're not downplaying his future; we're aiming for the best he can do and be, until the day that the picture changes and the world around us has to adjust to get him through what comes.
Maybe I should be fighting harder for his school life, not sure what more he should have...but I guess I could spend five minutes scrolling though the parents pages on Facebook to give me ideas and massive concerns because I am not on their path, but I don't. I am encouraging him to grow as best he can where he is...I'm supporting him medically and trying to remember the other stuff too. Sometimes it's like they can't coincide in the same space, but I still worry about it and try.
We love Bradley, we will fight for him in every aspect of his life. We will support him and our care for him only changes based on what he needs. When the normal you have changes to a new normal, you get used to the new normal or it breaks you. We haven't been broken yet, God willing, we will continue to keep striving by supporting each other and through the care and support from our Bradley supporters. Thanks Guys! You keep the line moving in our house.
So a Bradley medical update. One day at a time from us. Challenges on top of challenges... makes the Blog Challenge a little less daunting actually.
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