First Steps

The idea of "getting turned on" is so ripe for jokes, it's no wonder Den already has a few. "I always wanted to be turned on, but not this way...."  "In college I was turned on all the time and it was a lot more fun .... " And so on.

His good humor and emotional strength aside, the "turn on" and first adjustment of his DBS was difficult. He finds his speech is quieter and slower, and the "down" times are still quite bad but now with a new sense of something in his brain [not pleasant/alarming]; still, in the "up" moments he is experiencing more relief than he has had in a long time.  He is focusing on the outcome, knowing he has at least two more "adjustments" in Portland before they consider him fully programmed.

Yes, but how is he doing, you ask? Answer: it's a long road to the top when you want to rock 'n' roll [and Den wants to dance again].

Daphne

Ready for home!

Den's second surgery went well yesterday and the battery pack is now in his chest. We all await mid-September to have the sensors turned on, and the three months of fine tuning before he is fully "juiced". 

It is a long road to get this fully working.  Let's hope Christmas brings renewed energy and health for Den. 

In the meantime, my dear cousin Robert is with them now and will bring them back to Missoula on Sunday. A Monday dinner of pizza (and maybe a toast!) will be shared together. 

Thank you all for your support. It has meant so much. 

Daphne

Fighting Irish[man]: He is out and healing ... and waiting for surgery #2 in 10 days to get his battery pack. He and Mom are doing great under the circumstances.

When to release

As those of you who learned how to fly fish from Den (and there are a few of you, I know) you know there are times when "releasing" is the right thing to do. 

Releasing Den from ICU to a hotel room one night after brain surgery when he cannot hold down food isn't one of those times.

I am happy to report that with some advocating by a sensible, intelligent, and listening nurse, Den will have one more night in the ICU. This comes as a relief: Taking him to a hotel tonight would have put a stress on my parents for sure.

Mom is holding up great. I am impressed by how calm she is dealing with all of this, and how logically. She has spent the entire day by his side, making sure he is ok and getting necessary care. I saw Den this morning, Michael is there now, and I will bring the kids to see Den--one at a time-- in an hour. I think he feels supported and safe during this foggy time. He looks good but seems very, very tired. I think mom could use a glass of wine and a good meal. Our plan is to make sure that happens tonight.

Thank you all for checking in. I will post again tomorrow before my family and I head back to missoula.

Daphne

Recovery

Today brings challenges. Den was sick a lot of  last night and his blood pressure is high and spiking. He is supposed to be released today but Mom and I may advocate for another night in the ICU.  Advocating to a neurosurgeon is about as easy as it sounds, but we are up for the challenge. 

Den is using his hospital stay to tell people about his Summit for Parkinson's work: it will be a challenge to get that Irishman to turn off his brain for ten days!

I will update this afternoon once we know more. 

Daphne

All is well--first step a success!

Den's surgery is complete and all went well.  He is in recovery and we will see him once he is moved to the ICU. 

Bionic handball

When you or a loved one is suffering from a disease, every cure or beneficial procedure seems to be put into a context of percentages.  This becomes particularly true when dealing with surgery. Right now, I am hanging on to 1 in 1000.

1 in 1000 is the chance of something going seriously wrong during tomorrow's surgery. Pretty nice odds when the lifetime chances of getting seriously hurt in a motor vehicle accident are 1 in 266. Really, getting trough Portland traffic to get to the hospital may be more statistically dangerous than having deep brain stimulation! (Other interesting prcentages: getting hit by an asteroid is 1 in 500,000, getting cancer is 1 in 7.)

Tomorrow morning Den will go in to surgery, the second DBS patient of the morning. When I asked the doctor, "What about alcohol after surgery?", he replied, "You want recommendations? Oregon has some nice Pinot."  It was established that Den can have a nice glass of celebration wine when he gets out of ICU.

Den will leave ICU with two U shaped transmitters in his forehead. About 10 days later he will go back into surgery to implant the power pack into his chest. It will then be programmed and turned on mid-September. So, tomorrow is the first part of a month long journey to finding some relief from Parkinson's: in short,  we won't know if the surgery worked for him until the device is programmed and turned on about a month from now.

In the time between tomorrow's surgery and the chest implant, Den will have to rest his brain. He was told not to think too much and to take life very easy:  his brain needs to rest and heal. All questions about economics or geographical trivia will have to be answered upon his return to Missoula. I thought he could watch the E! Entertainment channel as much as possible, particularly any reality show with Kardashian in the title. Mom and he will, instead, head for the coast for the recovery period where he can be by the sea, which is probably a better idea. 

Tomorrow feels hopeful. His doctor is one of the best and so is this health center. Den  is having such a hard time with Parkinson's that we feel grateful we have this procedure as a possible chance to resume a more normal life. Den spent a fair amount of time with the doctor today asking if the wire from his chest to his brain could be longer so he could have full motion during handball. It can't, which could provide a good excuse if he loses a handball game after recovery. As Den showed the doctor the full motion he needed for handball, I felt a surge of happiness: it has been a long time since he has talked about playing his favorite sport.

Thank you all for your encouragement, support, and hope. I will post later tomorrow. 

Daphne