Today is a blessing

I can't not post, this is my only release besides praying. So with that said, I'm still going to update this blog. With every illness comes its good and its bad days. Today was a better day than the last week has been. It was nice because our family finally got to breathe. Although it may not last long, we take what we can get. He went back to the hospital today with his site being as awful as it is and put yet again, new sutures in. In addition as a last-ditch effort, they are going to go forward with surgery next week. I guess what my mom called it was "revising" his stoma. In other words, instead of creating a new one which would cause massive complications, they are going to try and reshape or reposition his. For me, this is my answered prayer, I'm holding on to everything with this surgery next week and enjoying that fact that there is hope left. If the surgery doesn't work then that really is it and my brother will be earning his wings....I don't think we have a year though.

His body is already showing signs from the severity of the condition of his stoma. A good heart rate for him to have when awake is anywhere from 100-120. When he is asleep, generally we look for anywhere between 60 and 95 (it depends on if he's in a deep sleep or not). Well this is something new but he just started to have an elevated heart rate- 130 or 140; you would think those interval changes wouldn't be that big of a deal but for him it is, an elevated heart rate tells us that his body is under stress somewhere, whether it be an infection or dehydration. Any way you look at it, it's not good. They are pumping a large amount of fluids in through his stomach, not even his feeding tube anymore to try and rehydrate him. He's on antibiotics for who knows what...I assume the chance for infection with a hole in your stomach is extremely high. He's also on medication to decrease the acidity of his secretions so that if they leak out, they don't do as much damage (at least that's the hope).  He's exhausted and not very smiley today; his urine output is low and it's very concentrated; all a result from the dehydration I'm sure. He's not getting a proper amount of feeding and water because they are all leaking out of the stoma. It's a struggle to maintain his weight which is why he is so thin. This is the point we were at in the beginning,  he became so dehydrated he was admitted to the hospital. That's when they discovered the problem with his mic-key button and replaced it with a GJ tube. 

 I realize this is more factual information than usual but these are things that make a difference every day. When he gets a breathing treatment you expect his heart rate to increase a little bit because that's the side effect for respiratory steroids. However, 120-130 is okay but 151 is definitely not okay...that's actually reaching a danger zone. A heart rate that high is one you want to get control of quickly because they body is really struggling. In fact, after I finish this I'll probably go and check to see if its decreased. Jacob isn't the same little boy he was even compared to yesterday. His activity has significantly decreased and he cries when he has to sit up. All he wants to do is lay in bed which is a sign that something is VERY wrong. He's usually constantly trying to roll around his bed or sit up, he scoots himself to the opposite side of the bed and tangles all of his wires, making alarms sound from the signal being cut off. But today he would lay in one place. If he moved, it was to roll to the other side.

Evidently things continue to worsen, we are on a constant spiral downward. I had a major breakdown last night~ thought back to when I was in high school and Jacob would be on the floor rolling around. Any concerns we had back then were respiratory and I thought I was going to lose him back then, I had no idea that I would be blessed with another year with him. But here we are, looking at losing him as a very strong possibility. The doctors can't even look us in the eye anymore and react with that dreaded silent gasp when they look at his site. It amazes me that a year ago today he wasn't in a brace and we were probably enjoying a normal day. I was looking forward to college orientation and my birthday without a single thought about loss. I was so focused on the future but today, a year later,  my family takes every hour as it comes. We expect nothing and plan very little. That's all we can do, as things continue to get worse, we are learning to enjoy every moment whether good or bad because it's a moment we have with him.

 I cannot sugar coat this. I've been doing that. Maybe I'm writing this to convince myself that this is a life threatening condition, maybe I'm not just venting it out. You just look at him and think there's no way he can leave us on this Earth but then you look at his dressing with all the secretions soaking through or his lack of energy and you're quickly brought back to reality. I pray everyday and someday soon I hope to update this with some positive news. For the time being though, this blog serves as an outlet for me. If horseback riding weren't so expensive that's what I'd be doing instead to organize my thoughts.