Hello everyone, it's me!

Hi there! I'm finally getting a chance to send a message to this helpful blog about my recent health crisis, created by James and Tim. They've invited me to share information about what's going on - now that I actually have Internet access and am in good enough condition to share some of my experience.

Thank you guys for your interest and support. It has been an amazing life experience, which I'm still going through. The following text is something that I just sent this morning to my co-workers to update them on my situation:

I'm currently going to morning rehab sessions located at Junipero and 3rd St. in Long Beach, at a very large and cool 1920s house that has been turned into a medical/counseling program center. I'm also seeing an accupuncturist named Dr. Arnette twice a week, and am seeing my regular physician, Dr. Sherman, who is also sending me to specialists and lab work. So, the schedule stays fairly busy, along with additional work that they assign to me. But it's going well.

My memory is coming back slowly. You guys might be familiar with some of the incorrect info I had in my brain and shared with others. One was telling people that I stayed for three weeks prior to Aug. 12 (the day I actually had to be hospitalized) at a small hospital in Long Beach. I didn't know why I was placed in that hospital, but I kept telling visitors about it until my family informed me that my memory was incorrect. And then there was the story about having been in the army and still being an auxiliary member, recently helping them create commercials for TV shows and other interesting tasks - none of which is true. I'm appreciating getting my brain back.

I'm being treated medically for herpes enchephalitis. That means herpes virus was sent to a section of my brain that mostly controls my memory of recent events and names of people and places. Encephalitis altered that section of my brain, causing me to not remember anything for the first month and then having lapses in memory and ability to focus properly. That is getting better, but I still have gaps that are being treated by those that I mentioned.

My heart stopped twice on Aug. 12, which was the first day I was placed in Community Hospital in Long Beach. Another near tragic situation was once again picking up a blood clot (in my left leg and in my lungs) which occured while being bedded down for over a week at my second stay, Memorial Hospital in Long Beach. I'm doing much better now but of course am more focused on my health condition, which will probably stay with me the rest of my life in a dormant status, according to doctors. I'm getting healthier and feeling better now, but will always have to take care of myself and be in contact with doctors.

Yes, a lot has happened and things have changed, but I do feel blessed by God and sense my condition improving. I do appreciate essential blessings I have now, including living through all of this so far and having some wonderful people provide support in my life. My wife Amy has been extremely involved and helpful here, including working out tricky administrative situations with Aetna and Regal, the health insurance providers, and communicating with doctors and specialists regularly to better manage my care. She's been very supportive and helpful, as have a few other friends and family members.

That's it for now! Will share more later.

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!

Visiting Hours Update

Just noticed someone wrote a comment inquiring about visiting hours.

Visiting hours are from 7am-9pm daily. They request that you keep cell phones turned off and that no more than two visitors are in with him at a time (there really isn't room for more than two anyway).

Please check in at the front desk to get a visitor sticker. Jon is currently in room 303, in the bed furthest away from the door and closest to the window.

Kindred Hospital - Westminster
200 Hospital Circle
Westminster, CA 92683
Phone: (714) 893-4541

Thursday Update: Continued Improvement

I just got back from visiting Jon, and his improvement has really been impressive. He was more talkative than he had been. These past couple of weeks, most of his talking was in response to questions people asked. This time he was talking more without having to be asked first.

He's not using his full range of vocabulary yet. He uses a lot of verbal placeholders, like "that thing," "so-and-so," and "whatchamacallit." And he tends to talk in generalities (i.e. "Amy and I have to take care of business at the house") without mentioning details.

After grabbing a small whiteboard/marker/eraser set that Amy had brought to the room, we started playing "Name that Name." I would write down the name of someone Jon knows and quiz him on who that person was.

Having worked for several years at the company where Jon is currently employed, I have the advantage of knowing many of the people he works with. So we started off with names of coworkers, and Jon would describe what that person did at the company. For the first dozen or so names, he scored 100%.

Trying to make it a little more challenging, I wrote down a few names of people who had worked there for many years, but don't work there presently. He got those correct too, except for one, which he eventually got after a couple of clues.

Jon's brother-in-law, who walked in mid-way through the round, suggested that we write names of famous musicians. Remembering names from Jon's iPod, I wrote "Nino Rota." After a moment's pause, Jon identified him as the musician who scored films for "that director" (he didn't mention Fellini by name). He even correctly noted that Nino Rota wrote music for the Godfather .

Next was "Ennio Morricone," who Jon successfully identified as the one who did music for westerns in the '50s and '60s. He even specifically mentioned the film A Fistful of Dollars.

When Jon saw "Bernard Herrmann," he immediately identified the genre, adding that Bernard Hermann wrote music for films by "that British director." He couldn't remember the name of that British director immediately, but after hearing the first name ("Alfred") and the first letter of the last name ("H"), he correctly said "Hitchcock."

It was really impressive seeing Jon dig for, and then find those memories. It definitely leaves me with the assurance that, with time, Jon will fully overcome his memory lapse.

So if you visit, please grab that whiteboard and continue helping Jon remember.

Noticeable Improvement

Last night we went to visit Jon at Kindred Hospital in Westminster, and we can honestly say that Jon appears to have improved quite a bit from when we saw him last Thursday at Long Beach Memorial.

Jon still has memory loss, but otherwise he was conversing pretty well. There was a time back when he was at Long Beach Community Hospital where if you asked him a question, he might answer with something completely off topic. Last night, however, he was on topic nearly the whole time, even if he didn't remember some details.

A good example was when we asked him who was President when he was born (it was John F. Kennedy, FYI). He didn't answer that one, but he did mention that the first president he remembers was Richard Nixon. In fact, he remembered all the presidents after Nixon, although a couple of them he couldn't remember their names (Bill Clinton, surprisingly enough).

He's also kicking butt on his hand-held Yahtzee game. Amy, who spent about four hours with him yesterday, said he even had a 400+ point game yesterday.

So in our non-medically-trained assessment, we see definite improvement. Still no word on how long they expect him to be hospitalized. He'll be in there another two weeks at minimum, since that's how long the treatment process for encephalitis is. After that, we're not sure at this stage.

Jon in New Facility

Jon has officially moved hospitals as anticipated. Amy and sister Ashley were there for several hours yesterday and said he seemed to be doing better. Today Jon' s mom, sister and brother in law went to spend time with him. Other than that, not much to update for now.

Jon Transferring Hospitals

Just received word that Jon is transferring to Kindred Hosptial in Westminster. This 109-bed facility is what they call a LTAC (long-term acute care) hospital, which is designed for longer-term care of medically complex patients, including people with brain injuries.

Just so there are no misconceptions, LTAC is not what they call a chronic care facility. It's not a skilled nursing facility (aka "nursing home"). And it's not a rehabilitation facility. It's just the type of place you go when your recovery is going to take weeks, not days.

We're told he is moving sometime tonight and should be in place on Saturday. We don't have the room number at this time, but we do have the address:

Kindred Hospital - Westnminster
200 Hospital Circle
Westminster, CA 92683
Phone: (714) 893-4541

Once we know more about the room and visiting hours, we'll post it here on jonlesage.com.

Friday Update

I got an update from Amy about Jon. The reason he was put back into ICU after being transferred to a regular room was due to a pulmonary embolism, which is the blockage of pulmonary artery, usually from a blood clot.

Subsequently, they now have him on blood-thinning medication. Unfortunately one of the side effects of blood-thinning medication is inflammation of the brain. Because he's still under treatment for encephalitis, they need to monitor him more closely, and the ICU is the best place for that level of monitoring.

Treatment for encephalitis takes a couple of weeks, however they expect to move Jon out of the ICU and back into a regular hospital room in a couple of days.

Incidentally, the medical staff was a lot better about providing information to Amy on Thursday than it was on Wednesday. Amy has since received much more information and is a little less stressed out from that aspect.

Still no visitors for Jon except for immediate family at this point.

New Tests; Still in ICU

Not a lot has changed since the last update. Jon is still in the ICU and has undergone more tests, including a new MRI. Meanwhile Amy has been struggling to get more information from the doctors.

We visited him last night. He was in fairly good spirits given the circumstances, and recognized us when we walked in. But you can tell the hospitalization is wearing on him. He was pretty tired too.

But we are happy that he's at the better hospital now. For instance, Amy's personal doctor called to inquire about Jon's status, and asked who Jon's primary doctor was. When Amy's doctor heard the name, he said Jon's doctor is very reputable in his field. That's good news. The flip side to that is that Jon's doctor has not been very accessible to answer questions for Amy.

The nurses are very matter-of-fact about things there. We understand they have difficult jobs with a lot of demands. Too bad they don't have very much bedside manner when it comes to explaining things to Amy, who's been pretty stressed out trying to get more information.

Incidentally, for all of you who have sent support messages through this website, please know that Amy has been receiving your messages and has been telling Jon about all the people who have written. With her hectic schedule right now, she hasn't had the chance to individually write back to everybody, but she does indeed thank you for all the love, support, prayers and positive thoughts.

Scratch The Last Update

Just found out from Amy that Jon was moved from his regular room back to ICU. We don't yet know the reasons why. Amy is waiting to hear back from the doctors.

If you're not immediate family and were planning on visiting today, please hold off until further notice.

Jon's in Room 453B

New update. They have moved Jon out of the ICU and to a regular room. It's room 453B.

If you'd like to visit Jon, visiting hours are 8 a.m. to 9 p.m. Only two visitors per patient are allowed in the room at one time.

Please no phone calls to his room at this point.

Jon Leaving the ICU

Amy just got back from visiting Jon in the hospital the second time today. Jon was doing fairly well all things considering, but she said he was a little down from being in the hospital so long.

But the good news is that Jon is being moved out of the ICU and into a regular hospital room tonight, which means that barring an unforseen change, Jon will be able to see visitors Tuesday (please call the hospital to confirm that he has been moved before actually showing up).

General visiting hours are from 8 a.m. to 9 p.m. Only two visitors per patient are allowed in the room at one time. No food, drink or cell phones are allowed in the rooms.

Jon Still in ICU

Latest update: Jon is still in the ICU. Apparently they don't have a bed available to move him to. But they are now hoping to move him to a regular room tomorrow.

Jon also saw a speech therapist today, who said he was doing well given the circumstances. She didn't see any reason why Jon can't recover from this.

Visits are still limited to immediate family only. But if you do get a chance to visit Jon in the next couple of days once he's moved to a regular room, Amy says he has trouble recognizing some people. So don't be surprised if he reacts as if he doesn't know you.

Jon Diagnosed

Finally after a week the doctor's confirmed that Jon does indeed have encephalitis. Which is good because now they know the course of action. It's still serious. But treatable.

They are likely moving Jon from the ICU into a regular room tomorrow (Tuesday). So that's good news!

Update on Jon's Condition

Hi everyone,

Some of you know that Jon is in the hospital. For those of you who are just finding out, sorry for the delay. It has been a crazy week! Thank you all so much for your love and support. You are all so appreciated, especially at this time. I am getting many, many calls every day. As much as I love to hear from everyone and share info about Jon’s condition, I am getting exhausted! So, James and Tim have put together a blog. You can get updates on Jon’s condition and write questions via email. One of us will do our best to get back to you as soon as possible. Right now, we can use as much love, light, positive thoughts and prayers as you want to send our way. He’s still in ICU and only able to get visits from immediate family. When that changes, we’ll get it in the blog and I’m certain he would love lots of visits, since he will probably be in the hospital for several weeks.

Big hugz all and thanks again,

Amy

Address: www.jonlesage.com

FYI, he’s at Long Beach Memorial Hospital

Sunday Update

Just got an update from Amy. Jon is still in the ICU at Long Beach Memorial Hospital. They're limiting visits to immediate family at this point, and even then, visits are limited to just a few minutes at a time.

If you do get a chance to visit Jon and he's asleep when you arrive, the doctors suggested that it's good to actually wake him up and keep him engaged with simple questions. Obviously you don't want to stress him out with too many questions, but some activity to keep him alert is good for his recovery. So if he's asleep, don't just leave him that way.

Be sure to check this website to see when he can have more visitors.

According to Amy, he seemed pretty alert this morning, and he was playing with his Yahtzee hand-held game, continually attempting to achieve four 250+ games in a row.

Jon has had many medical tests to determine what is causing the problems. It does not appear to be caused by a stroke, but it's looking more like encephalitis (although there is a possibility that it's West Nile). They did a lumbar puncture (aka Spinal Tap) and conclusive test results will be in tomorrow (Monday).

They know it's an infection due to his white blood cell count. It's not bacterial, but probably viral (that doesn't mean he's contagious).

They're also putting him on anti-seizure medication, since one of the side-effects of encephalitis is seizures.

Amy is doing well considering the stress she's dealing with. Jon's family and her family were all at the house today, and Amy's sister Ashley is spending the night so Amy doesn't have to be alone.

Lastly, on a positive note, Jon's epidemiologist said she treated a very similar case and that resulted in a full recovery. Obviously we're hoping for the same results with Jon.

Jon Moves Hospitals

Jon has been moved from Long Beach Community Hospital to Long Beach Memorial Hospital, where he'll be able to get better care.

The address is:

Long Beach Memorial Hospital
2801 Atlantic Ave.
Long Beach, CA 90806

He is in the Intensive Care Unit so he's not allowed to have visitors at this point. Also, please do not send flowers to the hospital - there simply isn't room for them right now.

If you'd like to send a card, please send directly to their home address. If you need the address e-mail thejonlesageblog @ gmail.com and we'll send it to you.

Thanks!