from Linda

I delayed posting this blog entry as we tried to reach family members with the news.

As I mentioned in my previous post, Jake suffered three serious seizures in the course of an hour on Monday. The EMTs were able to administer medication to ease the third seizure as they already had him in the ambulance when it started. We are thankful for that.

But these seizures are a sign of the future and that future will be short. We met with a Palliative Care professional from the Elliott Hospital yesterday afternoon. We talked about what the situation is and our expectations. Jake asked the tough question – how long? The answer – days to weeks, not months.

We voiced our desire to have Jake with us at home as long as possible. The kind Lisa gently explained about the seizures getting worse and more frequent as time moved on. Although we could have VNA and Hospice care in our home, it would not be 24/7. When Jake suffers his next seizure, it would take precious time to get the medicine necessary to ease the seizures effects. If we place Jake in a live-in Hospice situation, the medical staff there would be able to address his needs immediately. As one of four family members who witnessed those seizures, I cannot convey how terrifying they were. And add to that Jake was conscious of what was happening to him and his terror was evident. The decision has been made to find a bed for Jake in one of the three NH hospice units. Our house in Chester seems to be smack dab in between them all. We are hoping for the one in Concord, NH as my family lives nearby and that would help during this time.

Now for a little good news, Jake is not in pain and has not required any pain medication. So while he is tired and weak, his humor still shines through. Yesterday, Jake had a Five Guys burger and fries for lunch which impressed the staff. Last night when it came time to order from the hospital menu, Jake said “If this is one of my last meals, I’m not going to eat hospital food!” On request, we got him Haddock Fish and Chip, fried scallops and shrimp with lots of tarter sauce from The Weathervane. Following this thought, I got a Lazyman’s Lobster to make sure Jake’s last lobster wasn’t that icky fried stuff we had on Sunday. For dessert, another trip out for soft-serve chocolate and vanilla twist ice cream. This morning we are slow cooking baby-back ribs for his lunch.

Jake has also started a travel list with the kids of all the places he wants us to visit for him. Of course, the polar bears top the list, although more than a couple dozen places and sites have been discussed.

At this point, Jake is okay to have visitors as long as the visits are relatively short. While he is at Elliott, the visiting hours are 12noon-8pm – more info at www.elliothospital.org We don’t have a time frame for the move to the hospice. Please let me know if you plan to visit so I can keep you updated should anything change.

11am update
We just heard that Jake definitely qualifies for in-house hospice care but currently there are no beds available in Concord, NH. We are looking further afield in Merrimack and Dover.

 

Jake at the Elliott Hospital   May 21st, 2012

Today was a tough day. After a nice lunch with Jake’s brother, Dave, Jake started experiencing strong seizures. We called 911 for an EMT/ambulance. Thank you Derry Fire Department for being so kind, fast, and professional. And thanks to Dave for driving the kids and I to the hospital. Thanks to ┬ámy mom for driving Dave back to his car and taking the kids home, plus coming back to the ER to wait with Jake and I until his room was ready.

We spent most of the rest of the day in the ER waiting on test results. We are thankful – no more seizures at this point. They have started Jake on a new medication aimed at preventing more. Jake and I will be meeting up with various doctors tomorrow as the CT scan did not reveal anything new that may have caused these seizures.

Jake was groggy due to the medications, but demanded a meal in the ER so that is a positive sign. He also ran through his list of the things I should bring him like his special warm duvet comforter and such. At this point, I don’t know how long Jake will be in the hospital.

I apologize in advance to family as this may be the first time you hear about this especially if David has not been able to contact you yet. I just need to write this entry now before tomorrow when I will likely be spending most of my day in the hospital speaking with the doctors.

Linda