Black Hole

I feel as though I have fallen into a black hole of sadness. Things just aren't right with Logan. He is so very agitated every day and almost all day. Even when sleeping he isn't resting well. These past few days have brought many concerns to light. We don't talk a lot about it, but we know things are getting worse for Logan. For those of you who don't know, Logan has a neurodegenerative disorder. His condition has most likely worsened since December when he started having seizures. In the past couple of weeks, we think he has had more progression. 

It is heart wrenching to see him going through this. He seems miserable and we are miserable and exhausted. It is so difficult to console him and at times is impossible. We are just about at our wits end and have run out of ideas. 

So today we went back to the palliative care clinic. We have a new regimine of medication to start trying including clonidine, atropine drops to dry up oral secretions, and we are increasing his gabapentin dose twice as fast as was originally planned. This is only the first plan and there are many more options we can pursue as we find what does or does not work for him. 

Tonight it just can't seem to work fast enough. As I lay here in bed I can hear his monitor going off constantly due to a high heart rate and the suction machine seems to go non-stop. Thank god for our nurses because I would have lost it a long time ago without them. 

I pray that with the help of medications Logan can get back to himself. I am so scared that we may not get back the Logan we once knew as we continue to have to medicate him for comfort. If that is the case I will really be kicking myself. I feel like we haven't taken enough time to make special memories with him. Don't get me wrong, we have made memories but it feels like there are so many things we have missed doing as it is easier to stay home. He isn't even baptized. 

It is so easy to let the day to day tasks get in the way of pursuing things that matter most. Time just gets away and before you know it, it's too late. I don't know how to get past these feelings and start doing meaningful things. It is hard enough to keep up with the necessary tasks when all I want to do is sit and do nothing. 

As I am writing this post, feelings are pouring through. I try to not let them surface very often. It is painful to feel this way. I know we will get through this temporary black hole but what happens next is scary to contemplate. We are living through a disease process that is slowly taking our child from us. Some day it will take him away forever. It makes me so angry to think of what will come. I think I am going to end here as exhaustion is setting in. As always, thank you for all the support, prayers, and well wishes. We could, use some extra energy sent our way!