Sadness in Our Hearts

It is with great sadness that I write this. Damonito passed away early Friday September 2, 2016. He had been moved into at home Hospice Care in June because it was felt that he had moved into the next phase of Dravet Syndrome. His brain was no longer regulating the things we take for granted, temperature, muscle coordination, sleep, and swallowing. He had been getting worse but he was such a fighter and would often surprise us by following a really bad day with a string of really good days. In fact, when I spent time with him last Sunday, he was up, moving around, playful and happy. We had a great day together. Thursday Nicole noticed a decline she hadn't seen before. I have to say that Nicole has superpowers. She has the ability to see things that are invisible even to the doctors. She called me Thursday to say I needed to come right away and of course, I did. No one, at that point, could have anticipated the outcome. He had become comatose but at one point, he did open his eyes and gave everyone a hug, Nicole knew it was his goodbye. But you know, he had come back from the edge so many times I think we all thought he would find his way back. By midnight, he was struggling to breathe and we decided to move him to the Ryan House in downtown Phoenix. Transport came to get him and Nicole rode with him. He took his last breath around 4am.
I can't begin to tell you how tremendously sad we are. He was the light of our lives. He made us all better people. He was our prince, our beautiful boy, our knight in shining armor. And we will miss him every single day.

Familiarity

Damonito has had some really bad days. This is nothing new. He's also had some really good days, again, nothing new. It's easy to get drawn into thinking it's all going to be ok because it feels familiar. Just a string of good and bad days.

There are some definite issues that need daily attention. Swallowing is a real problem and will only get worse. The suction/aspirator machine has been tremendously helpful. And there's morphine for those moments when his body takes over and anxiety sets in because when you can't swallow sometimes you can't breathe. It's frightening. Damonito experiences panic attacks just like anyone else.

Damonito loves to turn on and off the light switch in his room. He watches the lights and the fan. He's discouraged from turning everything off because the fan in the room helps keep it cool. Also, he's struggling to walk making getting to the light switch difficult. So I bought him his very own light switch that lights up when he flips it on. He loved it. There is the possibility it would cause seizures so he'll have to be closely supervised when playing with it. But so far, so good.

Happy Birthday, Damonito.

Damonito had a birthday on Wednesday. He's 13 now. It's pretty amazing, actually. He's a teenager. It's a big deal.

DNR

Signing a DNR for a child is much different than signing a DNR for an adult. Especially someone who is elderly. It's a lot more clear when someone has lived a long life, you understand when they are sick and there is no hope for recovery. It's not so clear with a child. You hold on to hope.

When you sign a DNR for someone, you are letting medical personnel know that you don't want that person to be resuscitated by chest compressions or intubation. In other words, you don't want the person to have their heart restarted if it stops or a tube down their throat if they stop breathing. You are letting this person die a natural death. You are simply going to let them go.

If you don't sign a DNR, medical personnel is obligated to do whatever measures are necessary to keep someone alive. They have to by law. If they don't, they could put their own jobs and licenses on the line. It's the deal. It is only after all measures have been taken with no success that a person be allowed to die.

How is it even possible to make that decision for your own child? For a kid? As a parent, how can you see the situation rationally even when you know what is best? When you know your child has been through so much and managed to hang on but you are now facing the end of the road? How do you sign off on that?

Do Not Resuscitate. You doubt everything you know.

When Every Moment Counts

Damonito went to see a palliative/hospice pediatric doctor this week. His epileptologist recommended this new doctor because he feels that Damonito has moved on to the next phase of Dravet Syndrome. No one really knows. It's all pretty uncharted territory with Damonito steering this ship. We are no longer leading but following him now.

One of the things this new doctor told us is through her career in hospice, she's had five other Dravet Syndrome kids. Damonito is the oldest. That's the good and the bad news. Good because he's beaten the odds so many times he's setting a precedent. He has always found his way back. Bad because we don't know how much time he has left but it doesn't feel like much.

Damonito will get a new bed and other equipment as he needs it. We will take each day as it comes and see it for the blessing it is. He is interactive and happy and that's what is important. We will make every moment count because the moments are limited.

No News is Good News

 

I got to spend a little time with Damonito on Sunday, he's doing really well. Compared to last year at this time, he's fantastic. 

Damonito has been using Klonopin as a rescue drug since the onset of this epilepsy. Klonopin is used for a number of issues but it was developed as an anti-seizure medication and it works well. However, it has a number of undesirable side effects so long term use is not recommended (although it is used long term for many because it works). 

The point of a rescue drug is just that, for rescue and unfortunately since last June Damonito has been taking Klonopin daily. Damonito needs a reliable rescue drug so when all else fails and he is having uncontrollable seizures, he has something that will bring him out of it. The surgery was intended to ease his seizures so he could be taken off the regular dose of Klonopin and bring it back only when he needs a rescue.

It's a slow process but it's working. He's better than he has been in awhile.

Happy New Year

With a new year there is always new hope, Damonito is doing ok. He's still having grand mals but he is way better in January of 2016 than he was in January of 2015. He has a seizure disorder and that's not going away but he's better and we'll take what we can get. 

 

He's up and moving around a lot more. He's still not very steady and too much activity can mean a difficult night with seizures but it's hard to keep him down. He repeats movement like someone with obsessive compulsive behaviors. According to the Epilepsy Foundation website, "OCD is uncommon (some would say rare) in people with epilepsy, but there does seem to be a connection. OCD is seen most often in those with complex partial seizures originating in the temporal or frontal lobe, or seizures originating in the anterior cingulate gyrus, near the corpus callosum." 

Damonito has generalized seizures which means his seizures happen in the entire brain. I'm not sure how that fits into the OCD model but observing Damonito for just a few minutes, you would realize he has obsessive compulsive disorder. Or some version of it. 

For now, he's ok. We're looking forward to the new year.