MY HOSPICE STORY

Hospice is a word you probably don’t want to have to think about, especially not in conjunction with a child who has barely started living his life.

About 5.5 months ago, the word “hospice” became real to us. It was the first day of the ketogenic diet that we so hoped would stop Jacob’s seizures. Jacob’s blood pressure dropped, he had a hard time keeping his oxygen and heart rate at good levels. Vomiting and diarrhea with blood happened at the same time. It was one of those times when Dr. E. urged Joakim back to the hospital to be with Jacob and me, and when we didn’t know the outcome of the coming hours. It was one of Jacob’s crashes. The second one for Jacob in his life time. We did recognize the signs.

The next day, Jacob was a bit more stable, but needed the help of a breathing tube. Everybody was upset that the ketogenic diet had failed. Everybody was worried about how much more Jacob’s body could take. Everybody had lost their answers. I remember how one of the doctors in the ICU came into our little room, and talked about the option for us to move Jacob upstairs, remove the breathing tube, and just hold him until he would stop breathing. I remember that she was telling her own personal story for why she had gone into ICU care, I assume to help us. I still to this day have no clue what she said. I felt my whole body and mind resisting the information coming towards us. I felt my stomach hurting, thinking that it was only a week before Christmas. I remember anger, and that the only thing I wanted ICU to focus on was to get Jacob’s breathing tube out successfully. It was not the right time to give up on Jacob.

I remember the nurses in the ICU changing their attitude towards us. I remember two very young nurses feeling the urge to have the “big talk” with me when it was the least thing I wanted to discuss with strangers. Strangers looking at my child as someone they couldn’t save in the ICU, so it was time to ship him off to hospice. I read somewhere that it’s extremely hard to work in the ICU, and that you sort of survive because of the lives you save. In the cases of recurrent patients that they know they can never completely fix, they loose hope. They don’t know what to do, and that’s where there is a place for hospice.

At the same time as we wanted the ICU team to do whatever they could for Jacob. We could also not just ignore the topic after seeing how sick Jacob had been with epilepsy and his body crashing. We had spent 40 days in the hospital, and didn’t see an end to it. We also couldn’t ignore the topic, since it was brought up by Dr. E. who knows Jacob better than any other doctor. She made it very clear though that she couldn’t predict the future, but she felt we had to start thinking about it. She felt we should consider a DNR (do not resuscitate) in the house in the case that Jacob would die in his sleep. It would give us legal protection in the event of Jacob passing in his sleep.

We did leave the hospital right before Christmas with a DNR and a very uncertain future for Jacob. We had no idea how long he would stay with us. The threat of the future was daunting. It was hard to see others around us going about life’s normal duties when we just couldn’t plan anything.

Today, Jacob has come back to a baseline that I didn’t think was possible in December. I was in doubt if we would get the suctioning under control. I was in doubt about his brain and lungs. Being in status epilepticus for 11 days also changed Jacob’s life a lot. It’s devastating to think that Jacob was rolling, grasping objects, used his walker and stander on a daily basis, and laughed, smiled and vocalized a lot last year. But at the same time, it’s not as bad as you would think when we know the option is death. When you compare death to where we are today, I’ll take today any day. A good day with Jacob can make up for many bad days. It might not make sense to any ICU doctor or nurse, whose mission it is to save lives, but to me, his mom, it makes the world of difference. As long as I know Jacob is enjoying life, is not in pain, and can find his pleasures, we will do what makes sense for him.

I have spent many thoughts on hospice this year. I can see where it fits into the picture of care. There is a place where the goal is comfort. I just doubt if it will ever be the place for Jacob. Mitochondrial disorder just doesn’t work that way. It’s not that there is a possible cure, and when that cure fails, you move to hospice. You treat the obvious things like seizures, feeding issues, pneumonia and other things. If I would predict the future, we’re not going to get a warning of when Jacob’s life is getting to an end. I am expecting a big crash, and very little time to make decisions. I am hoping I will know when that time is here, and be the brave mother to let my son go.

But for now, I am hoping for a great summer. I am hoping that Jacob gets to enjoy the outdoors and his pleasures in life. I am hoping for that perfect summer that simply means good health and good friends.

Thanks for listening, Maria.