Jon Moved to New Facility

It appears Jon has improved so much that he's now outgrown the treatment and rehabilitation abilities of Kindred Hospital, and beginning today, he will be moving to a skilled nursing facility in Long Beach.

We saw him today. And apart from not being able to remember some names of people and places, he was sharp and agile. In fact had you not known he has been hospitalized, you would never notice.

I'm not sure yet about visiting hours, but Jon has now been moved to:

Empress Rehabilitation Center and Skilled Nursing
1020 Termino Ave
Long Beach, CA 90804
562.433.6791
(Note: This phone number is the MAIN number, not direct to Jon's room)

We're still not sure what the next steps are. The one thing that's known for sure is that his stay in Empress will likely be short term. More on that later.

Another Good Sunday With Jon

We visited Jon again Sunday and were impressed at his improvement since he was first hospitalized. He was sharp, remembered most things we quizzed him on, and was eager to start working again (almost too eager ... we kind of had to encourage him to focus on getting better first). But it was great seeing him at almost his normal self.


Jon enjoys a burrito from Baja Fresh. (09/16/07)

Incidentally, he's been making a lot of phone calls, calling friends and family, etc. So don't be surprised if you get a phone call from Jon.

In terms of next steps, there's a couple of things going on. You've already read about the dispute between Amy and the insurance company. They want to send him to a nursing home. She wants to send him to where he can get better care and speech and cognitive rehabilitation therapies.

Thanks to the suggestion from one of you blog readers, Amy got in touch with a place in Encino called the Centre for Neuro Skills. This place works specifically with people with brain issues, like Jon. After some phone calls and later, a consultation, they've determined that Jon is a qualified candidate for their facility, and they would like to take him provided that the insurance will approve.

So currently Amy is gathering letters from the doctors to help petition the insurance company to approve his transfer to the Encino facility. In addition, she's having a meeting tomorrow with some of the administrators of his current facility, Kindred hospital. Hopefully she can gain some support from them in transferring Jon to the Centre for Neuro Skills.

If anyone can think of any additional resources Amy can use in petitioning the insurance provider, please pass them along to Amy. If you don't have her direct contact info, you can always send it to thejonlesageblog@gmail.com and we'll forward to Amy. Thanks! :)

Insurance Battles

Sorry for not having updated the blog very much this week. There's not much new news with Jon other than he's continuing to improve. He's no longer on intravenous anti-viral medication for the encephalitis (they're switching to a pill form, which is the next stage).

The big trouble this week is the difficulty Amy is having with the insurance company. Insurance wants to send Jon to a skilled nursing facility. But he is unlikely to get the speech and physical therapy there that he needs, and she would prefer not to move him.

If anyone has had success petitioning an HMO in the past and would like to share any tips or strategies with Amy, I'm sure she would appreciate it. Please contact Amy directly, or if you don't have her contact info, send a note to thejonlesageblog@gmail.com and we'll forward it.

Jon's Sunday Picnic

Jon was doing really well today. We got there and found him sitting at the picnic table just outside the hospital entry, along with Amy, their friend Tom, Tom's son Dominic and Jon and Amy's dog Flossie (it was Jon's first time seeing Flossie since he was hospitalized more than three weeks ago).


Amy and Jon take a visit outside the hospital today. (Click photo to see a larger size)

Jon was taking a well-needed break from hospital food as he was digging into a sandwich from Togo's (#9, turkey and avocado), Jon's favorite. He was walking around quite a bit, although he did get tired easily since he's been accustomed to laying in a hospital bed these past couple of weeks.

We stayed nearly two hours and he was pretty sharp and alert the whole time. He still has a long way to go before recovering 100%, but it was good to see how much he has progressed since the beginning of this whole ordeal.

Jon Moved to Room 213

We saw Jon last night. He was doing well for a while, almost as if he was back to normal. But after about 20 minutes or so he kind of started to fade out a little bit. It's probably going to be that way for a while.

Also, if you go visit, please note that they moved him to room #213. He's now closest to the door.

A Request from Amy

I just got off the phone with Amy, who has essentially spent all morning on the phone with the insurance company about where to send Jon after he gets discharged from Kindred Hospital (which could be as soon as this Friday).

The insurance company would like to send him to a skilled nursing facility. However, Amy fears that sending him there would impede his recovery, especially if the facility is lacking in speech and cognitive therapy.

What Amy would like to ask all of you reading this blog: Are you aware of any facilities in Southern California that specializes in treating people with brain injuries and diseases like encephalitis. Especially if the facility offers speech and cognitive therapy.

If anyone has any suggestions, please contact Amy. If you don't have her direct contact info, you can always e-mail thejonlesageblog@gmail.com and it will be forwarded to Amy the same day.

Amy also wanted me to thank everyone who has sent supportive e-mails and other messages.

Jon's Improving

Just talked to Amy who said Jon has improved since Sunday when he appeared really out of it. The medical staff have deemed the heart monitors to no longer be necessary, so they disconnected him from that. They also are weaning him off some of his medications, providing them only when needed and not routinely. (The anti-viral treatment for the encephalitis will continue until completion on the 9th, however).

Amy, Sabrina and Eric even took Jon outside for a while (in a wheelchair, but still, at least he got to see some new sights apart from his hospital room). As it turned out, he got too hot after a few minutes and wanted to get back into the air conditioned room. The whole time he was outside, he kept saying, "I didn't think it would be like this."

Clearly Jon is approaching the point where they're going to have to determine the next steps. Although Jon's improvement has been exceptional, people who have had brain damage akin to Jon's may take several months before they are back to their normal selves.

A skilled nursing facility was mentioned by at least one of the doctors, but Amy is a little worried that it might depress Jon if he's mixed up with people twice his age. So she's exploring other options.

A note about this blog: If anyone else would like to post updates here, we encourage you to do so. For example if you visited Jon and would like to share your experiences with Jon and Amy's friends and family members, please send your story to thejonlesageblog@gmail.com and we'll post it.

Up Days and Down Days

We saw Jon around 11:30 a.m. today. Amy was there too. Today was one of Jon's down days. He wasn't nearly as alert today as he was last Thursday. In fact he was pretty out of it.

Apparently he was feeling restless last night and attempted to pull his IV tubes out last night. Subsequently, the nurses sedated him with a sleeping pill around midnight. Because Jon doesn't typically take medications, they tend to hit him pretty hard. He was completely passed out when we got there.

He awoke a little later, but wasn't very talkative and only minimally responsive to our questions. We don't know whether he was still experiencing the after-effects of the sleeping pill, or whether he was just tired. The whole time I got the feeling he just wanted to get out of the hospital.

Jon is still going to be there at least until the 8th, since that's when he's scheduled to finish his anti-viral treatement for the encephalitis.

According to Amy, Jon is having three therapies each day: physical therapy, speech therapy and occupational therapy. When those start getting better, the doctors and therapists will decide if he needs to continue staying in that hospital.

The next progression is sending him to a skilled nursing facility, or possibly in-home care that Amy is looking into.

Therapists Optimistic

Amy spent yesterday morning with Jon during his appointments with various therapists (speech therapist, physical therapist, occupational therapist). They each performed various exercises with him, and each was optimistic about Jon's recovery thus far.

Amy wanted me to mention that Jon did well at playing Blackjack. You know what that means ... if you come visit, bring a deck of cards!