Code Status

We have been experiencing an early spring here in Minnesota. Logan has been out on a couple walks through the neighborhood and has spent some time in the yard with Lauren. It is so nice to get him out of the house. He has some new fancy sunglasses to help his sensitive eyes when he is out and about.

Last week we went and saw his pain/palliative care doctor. Along with the increase in seizures, Logan has been experiencing other changes since we saw her in October. Since we now know his type of seizures are very difficult to treat with medications, we have come to know that we may have to find other ways to comfort him. He is having periods of restlessness, constant generalized seizures, grinding of his teeth, and upset facial expressions. Along with that we are noticing more neurological irritability. When he is repositioned or picked up, he stiffens up and appears uncomfortable. He is less interested in toys and some activities at school. His eyes are more sensitive to bright lights as well.

I went to the palliative appointment to discuss these concerns and find a way to improve his quality of life. She was in complete agreement with my requests for pain management. After asking questions of his nurse and I, she said his symptoms and changes are to be expected as he continues to have neurological decline. With that, we are making some medication changes to help with the neuro irritability, pain, and oral secretions. It feels good to know we are adding medications that may make his life more comfortable. It is so painful to watch him especially when he looks up at me with looks of pain. He does not cry but has multiple facial expressions that we know are related to being upset and/or in pain.

Now for the emotional part of the blog. Be prepared as I talk about a very tough topic...

The second and more controversial topic we discussed was code status. We have decided to put in place a do not resuscitate order for Logan. What does this mean? It means in the event his heart stops, we would not want CPR performed. This sounds extreme but is actually an unlikely scenario considering Logan's other issues. We don't want an extreme measure performed on him as most likely in that case it would be unlikely he would have a meaningful recovery.

Aside from that, all other life saving measures will still be performed. He has an artificial airway and feeding tube in place so those decisions have already been made. If he was to stop breathing, which is a much more likely scenario, we do want ventilator efforts made. At that point we would decide how to proceed.

Having a degenerative brain disease means we will continue to see loss of skills, decreased ability to swallow, and decreased effort at breathing. When that happens, Joel and I will decide what to do. If he became ill, we would place him on a ventilator and try treatment to get him through the illness. If for some reason we could not get him off the ventilator, that would be time for bigger decisions than even a do not resuscitate order (no CPR) would bring. I don't want to ever have to make the decision to remove him from a ventilator but having him live on one at home seems like pretty poor quality of life for him. I know many people live on ventilators, but if the time came where he was not strong enough to breathe on his own, he would most likely be very weak and unable to do anything at all.

So, yes we made one very big decision for Logan that no parent should ever have to make but we aren't living in a typical day to day world. It sucks and is unfair that we have to think like this but as his parents, it is our duty to do everything we can to make this life the best possible for Logan. This is a very personal decision for us that did not happen overnight. We have discussed this many times and waited to do this until the time felt right. Any other parent may decide differently and that is okay. If we had no idea what we were up against we would probably decide differently but we know that Logan has a life limiting disease.

So in the meantime, we will continue to love him like crazy. I think it is time to start getting Lauren to talk about Logan more. She gets upset when I try to talk to her about his future. She shuts down on me whenever I bring it up. I think she knows what is going on but is trying to stay strong for us. It's time for some professional therapy for her and maybe us. 

So now after all that heavy writing, how about something happy! I am wondering if any of Team Logan would be interested in sending him cards, letters, or pictures. As it is getting harder to find things for him to enjoy, I think it would be nice for him to know how much support and love is out there for him. If you are interested, email me at rnzacher@gmail.com and I will send you our address.

Thanks for your continued support and prayers. It means so much to all of us.