Decisions we've made

This is going to be a really hard blog post to write and I'm having a hard time trying to figure out where to start. I have started and restarted this post many times. I keep procrastinating but it is time to let everyone know what is going on in the world of Mr. Logan.

It's been a really tough couple of weeks. As most of you know, Logan has a neuro degenerative disorder that doesn't have a specific name/diagnosis. We are on a roller coaster of unknowns and have spent the last five years learning on the fly. Unfortunately having a neuro degenerative condition means it is life limiting. We have always known this and I hope I have helped others understand the path we are on.

Having a child with a life limiting illness means the end may come sooner than you wish it would. Right now, we are not at the end but we are starting to prepare for it. Logan is now enrolled in hospice care.

If I could make the noise of brakes on a car coming to a screeching halt, this is probably what many of you readers are thinking or feeling. What?!

Hospice. It's true. We have started the transition to end of life care. Does this mean we are expecting Logan to leave us soon? No not at all. What it means is that we are putting our entire focus for Logan and our family toward giving him quality of life and comfort. We are no longer going to push for maintaining or improving his ability to function, instead we are going to support him as he tells us what he needs during this next phase.

Many people have asked me, "what has changed?" It is hard to describe as Logan's changes have been so rapid and have ranged from small to large. His seizures continue and will never be completely controlled by medication. In fact, they may continue to worsen. His discomfort is only mildly controlled by over the counter pain medications. He is doing more grinding of his teeth, shaking of his legs, and posturing in discomfort. He is requiring oxygen almost every night.

The other two most profound and recent changes are his eyes and heart rate. When he is awake and lying still, his heart rate is around 100 beats per minute. When he sleeps it is around 80-90. He is now having periods when he is completely awake and still, where his heart rate is dropping to the 80's. During these periods his breathing also slows. Most people would see this as a relaxed state but I worry that it is his bodies way of relaxing too much.

The symptom change that has bothered me the most is his eye control. I thought he was having a new type of seizure but I am pretty sure it is the lack of muscle strength in controlling his eyes. His eye balls are rolling upward and it looks like he is trying to look at something up above him. It seems to be worse when he is tired. He still has times when he can focus his eyes but it only lasts so long. It is so hard as I'm sure this bothers him to not have control over where he looks. It really upsets me too. I was once told that the eye muscles were some of the strongest in the human body and when they start to go it is a sign of profound degeneration. Seriously why can't it be something else that goes, why does it have to be eye control. Life is hard enough for him.

So back to the word hospice. We are at a tipping point where his team of palliative care providers are no longer equipped to provide the guidance needed to manage Logan's symptoms. Hospice is that team we need. We now have a hospice nurse, social worker, medical director, massage therapist, musician, and access to bountiful services. The doors have opened in ways I never imagined.

Logan will remain at home and we have decided to make his advanced directives to reflect this. We do not plan to hospitalize him if he becomes sicker than we can manage. We will not perform life saving interventions at this point either. I still can't believe I am typing these things being an ER nurse. I am so used to being part of a health care team that does everything imaginable to save a persons life. Now I have to completely change my way of thinking. Trust me, this has been the hardest part for me because what it means is that there is a day when I may have to be part of the decision to let Logan go without doing the full court press.

I know we will not be completely alone, what I describe is what I am used to, a clinical setting. We are so fortunate to have our home care nurses 24/7, a hospice team, and of course our amazing family and friends. We are not alone in this journey and He is with us every step of the way.

I would be lying if I said I am at peace with this. I am not there yet, I have a lot of work to do myself to make it to a place of accepting our fate. I didn't think hospice was in our near future. Every day though, I realize how thankful I am that it is here. Not to mean I want Logan to leave us, but that now we have a way to give him what he needs to live every day comfortably.

I know some day there will be a hole in our hearts and in our home. We have a seven year old that is living through this as well. She is so strong and I pray every day that she comes out on the other side a stronger person. I pray that Joel and I hold each other up when we need it as we have always done before. And for Logan, I pray for peace and relief. He has taught us all more than we ever imagined and now it is his turn to rest.

Thank you to everyone for the continued support and prayers. This journey is hard and at times painful but having love and support around us continues to lift us up.