Second Annual Jimm Revelle Racquetball Tournament

For anyone who happens to check in here.. we held the tournament in Westminster Nov 1, 2008 and everyone had a blast. We also earned additional much needed money for hospital bills and other expenses incurred by Deborah.

From the JimmRBall Blog
The tournament went very well. Good food and fun was had by all.. and due to a great turnout, a good amount was earned for the JR Revelle Fund. Details on that, as well as racquetball placements and pictures, will be up soon.
Many thanks to Joe and Kathy Cornell for another fabulous job.. and to all who attended and contributed!

Date Worthy of Note

May 29th 2008 marks one year since Jimm first went into the hospital for his pancreatitis. He was admitted at Upper Chesapeake Medical Center in Bel Air. The beginning phases of his treatment are documented HERE.
This turned out to be the beginning of a nightmare lived by Jimm, all who knew him.. and especially those who loved him dearly.

We have learned that the Community Foundation of Carroll County passed along funds to Deborah for Jimm's funeral, but it was not enough to cover the entire cost. However, after Jimm's passing, friends rallied to contribute over $2,000.00 which enabled the Foundation to completely cover all funeral expenses. Thanks as always to all Jimm's faithful friends!

Update - Deborah and the Revelle Family

I recently visited Deborah, Mandi, Laura, Rob, Mason and Robert.
They are doing well considering. Jenna is studying for her masters, but still finds time to visit the rest of the guys often. They all live busy lives and are effectively putting one foot in front of the other, day by day.. as they will be doing for a considerable time to come. Moments occur that act as reminders- looking through Jimm's stuff for instance- and can quickly bring emotions to the surface.

May 29th 2008 will mark one year since Jimm was taken ill.
Hard to believe any of it.

From Donna Quante

I am so sad to hear of Jimm's passing. I was in Canada at
the time, but checked the blog everyday.
As I was driving home this morning, after being on the road all
night, I witnessed this sunrise. I realized it was about the time of
Jimm's memorial service. So, I said goodbye and farewell in my own
way. I have printed this out as a card for Jimm's family.
Godspeed, Jimm.
Donna

The Gatherings and Goodbyes

The long illness was a constant struggle, for Jimm and everyone. Now that Jimm's struggle is over, others still have difficult times to endure. Allowing family and friends to say goodbye, meant more work and emotional pressures for those already in distress, but they did it with class.

Sincerest thanks to the many who visited the funeral home on Thursday, and attended the service on Friday. Members of Jimm's enormous family.. and friends who have become involved with him and Deborah through proximity, work, play and life.. were there to wish him well. The memorial service was unforgettable. There were prayers, readings, and comments by those who will always hold Jimm tightly in their hearts. At the conclusion, military honors gave recognition to Jimm's four years in the Air Force. It was hard to remain detached as taps was played, followed by the ritual folding of the American flag that had been draped over the coffin.. which was then presented to Deborah.
For those who were unable to attend and who will be remembering Jimm in their own way, we have included above, the pamphlet of thoughts and pictures put together by Jimm's loving family.

The reception and lunch at Laura and Rob's beautiful home in Bel Air was a celebration of love and family history. The presence of multiple generations from diverse places, with the most amazing and colorful stories about Jimm, highlighted and honored his remarkable life.
All of us are so lucky to have known this man, and to have lived parts of our lives with him. And now, in turn, we are accorded the pleasure of continuing to enjoy the company of many of the wonderful people we have befriended through him.. even after his departure.

At this point, if you have goodbyes, stories or thoughts about Jimm you would like to share, please feel free to do so in comments below.
_____________________________________________________

This blog will continue to be added to as needed, and will remain open indefinitely.. acting as a partial record of the events which occurred in the final part of Jimm Revelle's life. Sometime soon I will make an effort to record the entire blog as a Word file, or, if you are good at that sort of thing, you may wish to do it yourself.
aw

A Note

People ask me how Deborah is doing, and I have to say very well considering the extreme circumstances. She has shown a great deal of toughness and determination during this long and painful process. The same applies to everyone in the Revelle family. They have all been amazing, and have consistently been supportive of each other.

We in this space have helped to support each other too. Soon, we might want to try exchanging thoughts about some of the fond memories we have of Jimm. After all.. he was quite a guy - who had a lot of good friends. And of course the financial issues are not going away, so the funding blog will continue to be relevant, as will the racquetball page.

In the meantime - I want to thank the many folks who have had kind things to say about this blog. I really appreciate hearing about how useful it has been to many.

For those attending the memorial service on Friday.. please drive carefully in the foul weather, but try your best to make it. The family still needs us to "be there" for them.

Funeral Information

Condolences may be sent to:
The Revelle Family
430 Oakton Way
Abingdon, MD 21009-3201

In lieu of flowers, contributions may be made to:
Jimm Revelle Fund c/o Community Foundation of Carroll County
255 Clifton Blvd, Suite 203
Westminster, MD 21157
Make checks payable to: Jimm Revelle Fund

Viewing: Thursday 2/21/08 2-4pm and 6-9pm

Memorial Service: Friday 2/22/08 at 10:30am

All services to take place at-

Schimunek Funeral Home

610 W MacPhail Rd

BelAir, MD 21014
MAP

Please note.. following the memorial service on Friday, all friends are invited to the home of Laura and Rob Andrews - 219 W. Hall Street, Bel Air, MD 21014 MAP

Further details can be found in obituary sections of the Baltimore Sun and the Aegis in Harford County in the Wednesday and Thursday editions.

Here is the notice from the Sun:

James R. Revelle
REVELLE , James R. On February 18, 2008, JAMES R. REVELLE; loving husband of Deborah Revelle; beloved father of Jennafer Revelle, Mandi Click, Laura Andrews and her husband Rob; dear grandfather of Robert and Mason Andrews; former husband of Susan Revelle; dear son of the late Edith Revelle and grandson of the late Pauline Preston. Relatives and friends are invited to call at The Schimunek Funeral Home of Bel Air, Inc., 610 MacPhail Road (at Route 24) on Thursday from 2-4 PM and 6-9 PM, where a memorial service, also open to friends and relatives, will be held on Friday at 10:30 AM. A private interment will occur at a later time. In lieu of flowers, donations may be made to: Community of Compassion, Revelle, The Community Foundation of Carroll County, 255 Clifton Blvd., Suite 203, Westminster, MD 21157.

Final Update for Feb 18th

Jimm passed peacefully at approx 7:58 PM. It turns out he had a severe antibiotic resistant form of pneumonia that was basically untreatable... that in addition to numerous other major physical issues, made it an insurmountable situation, and helped the family make one of the most difficult decisions of their lives. Jimm is in a better place now, and finally at peace.

Information on funeral arrangements will be noted when they become available.

Further Update #2 Feb 18th

Dr. Johnson has spoken with the family. They are going to let Jimm go.
Teams of hospital personnel are present to make Jimm comfortable and to be there for the family.
The family members are now saying goodbye one by one.

Further Update Feb 18th

At this time(4:45 PM)all the Revelle family members are at the hospital, including Jenna from the Philadelphia area, brought by Jimm's former wife and Jenna's mom Susan. They are awaiting a meeting with Dr. Johnson, chief of critical care surgery, for an assessment.
Jimm remains on the ventilator with full breathing assist.

Update February 18th

Things were much the same with Jimm's condition over the weekend. However, he has had quite low blood pressure often and two incidents of high temperatures around 102.. one Saturday early evening, and another Sunday at about the same time of day. The doctors thought that maybe the infection was due to a pocket of infected fluid in the area around the recently removed pancreatic drain site, but a scan and testing has not found that to be an obvious explanation.
This morning at 3:00 AM Deborah was called and told that Jimm was having trouble breathing. At this point(10:00 AM)he is not breathing by himself at all. A ventilator has been hooked up and is now providing full breathing assist. This is the first time since his stroke that his breathing ability has failed. Now, with Jimm on life support in this manner, the family may have a decision to make. Their knowledge of the situation, Jimm's preferences as delineated by a legal medical directive, and the doctors' opinions on Jimm's prognosis for a quality future, will all be taken into consideration.
Deborah and Mandi are on the way to the hospital, and the other family members have been notified.

Update February 14th

Yesterday the drain that had been in Jimm's left side kind of fell out. They decided not to put it back in and are hoping all is OK with the residual pancreatic discharges it was removing. The more drains they take out, the closer Jimm gets to being able to move to another facility.
He had dialysis and had the low BP thing happen again.. he also got a 101 degree fever, but that's better today.
Jimm had been looking a little scruffy so he was given a nice shave later in the day.

Our pal is the same, exhibiting no responses or movement, but with eyes open- he is watching and waiting with the rest of us.

Because it's Valentine's Day, Deborah wanted me to tell you that her heart goes out to all you guys who are there for her and the family, and who are checking in on the blog. She really appreciates it, and wants to send all of you a big old Valentine's hug.
Back atcha kid.

8 mo, 17 days

Update February 11th

The room move has occurred. Jimm is now in 756.
Dialysis today was accompanied by a period of very low blood pressure. Fluids and pressors brought that back up.
Otherwise, no changes of note in Jimm's overall condition.

Deborah, appreciative of good nursing care, has recently made a gift of Longaberger coffee mugs to members of the hospital staff who have been faithfully caring for Jimm these many months.

Update February 7th

The bladder infection is still a factor and is causing some bleeding, so they are working on making that better. Yesterday Jimm had dialysis and was quite tired, but today he was more awake and responsive.. following action well with his eyes and remaining attentive for longer periods. It is clear that Jimm appreciates visitors. Even though he can't tell anyone or communicate, a visit could mean a great deal to him. The cards and greetings certainly do also. Deborah and all family members wish to sincerely thank all those who have sent get well wishes, pictures and extras. And the blog greetings are read to Jimm every so often, so please keep them coming too.

Jimm is still on the list for the 7th floor, but remains in room 404 for the time being. He receives physical therapy and occupational therapy often, and he seems quite loved and well tended to where he is.

8 months 9 days

Update February 4th

A couple of things worthy of note today- Jimm had the usual dialysis, but not a lot of fluid was removed due to lower than normal blood pressure readings. He has a bladder infection that is being treated with an antibiotic, but is free of the vent to the point where it has been taken out of the room. Otherwise there are no significant changes in his condition.
They are thinking of moving him back up to the seventh floor in the near future, so clearly he is not in need of a concentrated amount of nursing care. The plan is to treat him as needed, make him comfortable, and watch and wait.

Update Februray 2nd

For the past few days there have been no changes in Jimm's status. Occasionally an arm lifted a bit here and there.. nothing else. The doctors have not commented further.
The family is becoming resigned to the fact that things may not swing Jimm's way from this point on. An old friend from Philadelphia saw him today. She had been reading the blog and thought it was time. No reaction from Jimm, but we would like to think he knew who she was.

*Jimm's Mailing Address

Jimm's mailing address-

James Revelle
Gudelsky 7 Rm 756
University of Maryland Medical Center
22 S. Greene Street
Baltimore, MD 21201

Cards and notes are so appreciated by the family, as well as by Jimm, that we urge you to continue sending them.

Thanks so much.

*Visiting Jimm

Recently, he has has a massive stroke which makes him unresponsive, but visits are still urged. We know he still appreciates seeing friends.. maybe now more than ever.
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By calling ahead to the patient info number.. 410-328-6971.. they will connect you to the nurses station and with some luck you may be able to speak with his nurse who will give you a general idea of his status. Frankly though, most staff won't give out much or any info to non-family.. so you will probably have to take your chances. The one question that may be answered.. is this an OK time to come see him? Answering that is not giving away any personal medical information.

Be aware that gloves and gowns are needed while in the room and they will be available in the hall outside the room in drawers of a cart usually. Gloves may be in boxes on the top, or in upper drawers. Put them on before going in, and take them off and toss them in a bin before exiting the room. If you have trouble getting the gown untied, it's pretty easy to just rip it off. Hospital staff people do it all the time.

When entering UMMC via the Green Street entrance, go to the information counter and say you are visiting James Revelle. They will give you a clip-on visitor's tag, validate any parking stubs you may have, and give you directions to the room. It would also be a good idea, especially if staying more than an hour, to obtain a slip from the main nurse's station on the floor that will help to keep your parking fee lower. As Helene has reminded us in the comments section- there are also pay-to-park spaces around the area. Just make sure you note the end time.. 3:00 or 4:00 PM usually, because they tow pretty quickly from what we've heard.

His room is #756 on the 7th floor of the Gudelsky Building(if that has changed they will tell you at the info desk what his current room is). Visiting hours are 11:00 AM to 6:30 PM. If you have other questions the general info number is 410-328-8667. For getting there and parking, look online at http://www.umm.edu/gethere/


Thanks so much.

*Please Leave A Greeting For Jimm's Family*

Now that Jimm is gone, you are invited to write down your thoughts, reactions.. or notes to his amazing family. I will leave the text of the original post intact.
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Someone suggested that it would be nice to have a sort of visitor's book here so that when Jimm gets better he will know who has checked in, and he can read all the thoughts that his friends have had -and enjoy their well wishes.

Please leave your name and a message for Jimm here!!
Click on "comments" below and a window will open that should make it easy for everyone to enter a note.. and to read all the others as well.
Thanks! -Note: If you access this post directly from the archive list, the comments may already be visible. In that case, please scroll down past all the existing greetings and find the "post a comment" link there.

I need to tell you how wonderful it is to see all these notes. The way they keep coming is an inspiration to all of us. Every so often I print up the greetings and take them, or have a family member take them to his room, so they can be read to him. Thanks so very much to each of you for taking the time to leave Jimm a message. Each one is sincerely appreciated.
aw

*Room Assignment Record

Jimm's rooms at UMMC 2007-2008..
14 rooms over the course of 8 mo, 17 days
MICU - Medical Intensive Care
SICU - Surgical Intensive Care (Shares OR's with Cowley Shock Trauma Center)
Surgical Step-Down - Still SICU but with 2 or 3 patients per nurse instead of 1-1

June 1- W7A RM 11 7th Floor Rm 11 Weinberg Building- MICU
June 5- G4 RM 22 4th Floor Rm 22 Gudelsky Building- SICU
July 22- G4 RM 20 4th floor Rm 20 Gudelsky Building- SICU
July 24- G7 RM 760 7th Floor Rm 760 Gudelsky Building- Surgical Step-Down-SICU
Aug 8- G4 RM 402 4th floor Rm 402 Gudelsky Building- SICU
Sept 10- G4 RM 420 4th floor Rm 420 Gudelsky Building- SICU
Nov 3- G7 RM 764 7th floor Rm 764 Gudelsky Building- Surgical Step-Down-SICU
Nov 18- G4 RM 432 4th floor Rm 432 Gudelsky Building- SICU
Dec 16- G7 RM 768 7th floor Rm 768 Gudelsky Building- Surgical Step-Down-SICU
Dec 22- G4 RM 414 4th floor Rm 414 Gudelsky Building- SICU
Dec 31- G7 RM 766 7th floor Rm 766 Gudelsky Building- Surgical Step-Down-SICU
Jan 7- G5 RM 513 5th floor Rm 513 Gudelsky Building- Private Room
Jan 8- G4 RM 404 4th floor Rm 404 Gudelsky Building- SICU
Feb 10- G7 RM 756 7th floor Rm 756 Gudelsky Building- Surgical Step-Down-SICU
Feb 18- Jimm leaves RM 756

*Note- Jimm Revelle Fund

The Jimm Revelle Fund is now in full swing. Please go to JimmRevellFund, a blog page that focuses on all financial issues.. and learn how you can help.

aw

*Companion Blog- JimmPics

We've put together a blog with pictures and other lighter stuff.. so click on this link
http://jimmpics.blogspot.com/ and take a look.
(Be sure to bookmark this one too)

Also: To go there anytime you can just click on the JimmPics link at the upper right of this blog.

Update January 30th

This is encouraging- later yesterday Jimm did some neat stuff. He mouthed(no speaking tube was hooked up) "bye bye", "bathroom" and a couple of other things.. he also did a thumbs-up sign. Considering his status, this is rather big news.

Today he could not be prompted to do any of these things, but at least he has demonstrated that he can perform these actions, and 'that is really cool'- as Deborah put it. He is back on a M-W-F dialysis schedule, meaning he had it today.. which may have made him too tired to be very responsive.

Update January 29th

No changes today. It has been eight months since Jimm's first hospitalization.

Update January 28th

No one had been able to rouse Jimm for the past three days, throwing a bit of a scare into all concerned. But today he has opened his eyes and seems a bit more with it.. enough to receive physical therapy. He also had dialysis.

The approach being taken now is to give Jimm a chance to have his brain cells decide whether they can come together and restore enough function to give Jimm a livable life. He also, from down deep inside, must chose to fight. If he can not do that, all who know the man understand that he would not want to go on with an existence devoid of all quality. If he can heal up a little more in a couple places, the next step for further rehab would be USH.

The waiting tests us all.. but in the meantime we must not forget to breathe.. and supporting the family is a way to do that. Deborah has received the first of the greetings containing gift cards and cash. A couple gas cards were passed along to Jenna, the gal with the longest drive, and we hope many more supportive goodies are yet to come.
Also, nothing is being said about restricting visits to Jimm. At this stage it will be a one-way conversation, but it's critical that he knows we are there for him whatever way we choose to show it.

Update January 24th

Yesterday Jimm spiked a mild fever, maybe from the fairly rigorous line insertions Tuesday in IR. Overnight his BP dropped and they gave him fluids and one unit of blood to help ease things back up. This morning it was just the opposite- he was put back on the vent when his BP became elevated due to irritation about all the people fussing about in the room checking this and that.
Later in the day he got dialysis and they left him alone so he could calm down and rest.

Tomorrow Deborah hopes to get an estimation of their plans for Jimm. At one point she wanted to take him back to Upper Chesapeake Medical Center where he started all this. The thought was: since UMMC can do only a limited amount for him in his current condition, may as well have him closer to home for the family's convenience.
Unfortunately that won't work with a certain particularly active drain in his side(one of three remaining drains). The only place he could go at this point is USH. University Specialty Hospital.

Update January 22nd

Today things are about the same. Jimm has been steady and is being dialyzed now. Earlier he went to the IR room, a sterile procedure room, and had new dialysis and central lines installed.

Deborah talks to Jimm a great deal, bringing him up to speed on current news and happenings.. and she is sure he hears her. She confirms that Jimm enjoys looking at pictures, and she reads him cards from friends often. Having a few extra greetings sent to him should really help to buck him up.

*Note: January 20th- Care Cards

The recent news about Jimm is very upsetting. Our first inclination is of course to feel bad for him and his incredible family. For me, that was followed by frustration at not being able to do anything.
Then I got thinking.. we have Deborah and the family. They are being swamped with expenses and drive at least 60 miles each day back and forth to the hospital. The cost for fuel alone is huge. We also have Jimm. He is still hanging in there, and can see and hear. He knows what's going on and needs even more support now than ever before.

Let's send a get well card to Jimm. In it could be three things: a message of hope and encouragement; a picture of you and your family taken off the computer.. just printed on plain paper and taped to the card would be fine; and a gas card for whatever amount for Deborah, or whichever family member she wants to hand it off to.

So Jimm will hear an upbeat greeting, be able to use his good eyes and look at a picture of friends, and the load will be lightened by a small amount for Deborah and the family. If a bunch of us do something similar it would send a hugely positive signal to all concerned.. that we are still here, and still hoping for better things for our good friend. Instead of a care package- it will be a sort of care card.

If you agree that it's a good idea do it!
Gift cards for other daily expenses like food, etc. would be great too.. just as long as it's from a major chain that can be found in all areas of the state of Maryland. Of course enclosing a small check would be a wonderful gesture as well.
If you can't do the money or gift card thing.. or even the picture part, please join in by sending a card to wish Jimm the very best. Getting these cards may not make him improve.. but they sure won't hurt!

If your card contains gift cards or money, you could send it to Deborah's home address to ensure it gets to her safely.. for cards alone, the hospital is fine.

Home address:

The Jimm Revelle Family
430 Oakton Way
Abingdon, MD 21009-3201

Or for cards only:

Mr. James Revelle
Gudelsky 4 Rm 404
University of Maryland Medical Center
22 S. Greene Street
Baltimore, MD 21201

Whatever their contents, having a lot of these cards coming in will send a very personal and heartwarming message to a family that is pretty low right now.. and doing this will make us all feel like we are at least doing a little something.

Comments section is open for any questions or ideas.

Thanks,
aw

Update January 19th

Family members met with doctors on Friday. They were told that there is an 85 to 90% probability that Jimm will not be responsive enough to avoid needing long term care in a nursing facility of some sort. One of the only areas of his brain that was not adversely affected by the anoxia is his brain stem.. the part of the brain that leads to the spinal cord, that functions as a conduit for impulses between the brain and body, and is a center for respiratory and cardiac control. This is why Jimm is able to breathe without the ventilator. See- Not Affected In Jimm's Brain -on right
The experts estimated that six months would be needed for rehab before this stroke hit, now they say that if he is able to come back, it will take an additional six months just to get to that previous starting point.

In addition to breathing on his own, Jimm is following people with his eyes as mentioned previously, puckering his lips to kiss, turning his head side to side, and squeezing hands. Most other movements have been random and are not considered voluntary. No sure response for eye blinks to help in communication has been observed yet.. but they're working on it. He had dialysis today and is receiving IV feeding.
All the family members are concentrating on the remaining 10 to 15% possibility of a recovery. The approach will be to let Jimm rest and recuperate to give him every chance to get better. In the meantime, Deborah has taken a leave of absence from work to be there for Jimm.. watching over him and giving him lots of TLC.

Update January 17th

After yet another brain scan, it is the estimation of the neurology people that Jimm has had a bilateral stroke. They think it was caused by oxygen deprivation(anoxia) during his aspiration event last Tuesday morning(see Tues Jan 8th post), and that it has affected numerous parts of his brain. Please see the list of those parts and related URL's under Articles for Additional Study at the bottom of the right hand column of this page.
So far, the prognosis does not sound good, indicating that he may not recover from this. The family however, is choosing to remain optimistic, and feeding that optimism is the fact that Jimm was off the vent and breathing on his own for four hours yesterday. They were going to try it again today. Deborah, Laura, Jenna and Mandi will have the situation explained in detail when they meet with doctors tomorrow(Friday).

Jimm is not communicating or moving on his own, but his eyes continue to follow movement when he is awake.
Please keep him and his amazing family in your thoughts and prayers during this difficult time.

Additional note: We have found out, due to local TV coverage, that the bug killing patients on Jimm's floor is Acinetobacter baumannii. Jimm has not been affected by this bacterium. He has enough problems already.

Update January 15th

Doctors have been studying the various scans that have been done in the past days.. there was another one performed today as well.. and they should be able to offer an assessment of Jimm's situation soon. Dr. Lissauer from surgery and Dr. Chen from neurology are two of those who are on the case and seem most willing to offer much needed information to the family. As soon as something substantive is forthcoming we will pass it along here.
In the meantime, Jimm has undergone no notable changes in his condition. He had new lines installed and received dialysis today, and is resting comfortably.

-day 232

Update January 13th

The latest CT scan has found what they are calling a "tiny bleed" in Jimm's cerebellum. It is suspected that this is the site of the stroke. The next couple days are deemed critical in determining how much damage this attack has done. On a positive note, a neurosurgeon is taking a careful look at this and has noted that none of the scans have detected any brain swelling.. a very good thing.

Jimm moved his right arm yesterday and did so again today, and at various times has been able to squeeze Jenna's hand, chew and swallow ice, stick his tongue out and actually wink. All these seem like little things, but they add up to evidence of motor abilities that are intact. The vent is still hooked up but they are hoping to begin the process of weaning him off in the upcoming days.

The trip to Hopkins is not going to happen anytime soon. There have been cases of infections due to what sounds like another super-bug mutation.. not VRE or MRSA, but something else.. on Jimm's floor that have killed four susceptible patients in the past week. So University is pretty much quarantined. Luckily Jimm is not near any of these rooms and is being tested daily.. so far, so good. Scary stuff on top of everything else.

With all this going on, Deborah and the family are still not happy with the handling of Jimm's case and the flow of information coming to them. The patient advocate has been consulted, and Monday Deborah and Laura will confront management with a list of questions that beg direct answers.. and the meeting with doctors we mentioned earlier will be requested.

Update January 11th - More facts added during day

It was determined today that Jimm has had a stroke. This is not the kind of news we want to hear. He has clearly been at risk for both stroke and pulmonary embolism during his hospitalization.. thus the insertion of the Greenfield or IVC filter some weeks ago[see Dec 18th and 21st 2007 posts]. At this point it is not clear how bad it was, if it was only one, what all the present effects of it are, and what the long term effects will be. Numerous tests have been done, and more are coming, to answer these questions. Today he had a CT, and earlier an MRI was completed. All we know so far is that the event occurred in the cerebellum. It is being conjectured that Tuesday morning Jimm either aspirated and choked triggering a stroke.. or the stroke triggered the choking.

As of this writing Jimm remains unresponsive. He does open his eyes, and today is following Deborah with them, but is not talking or reacting to commands. A couple days ago we heard that he had moved his toes after being told to do so, but now it's not clear that that ever did happen.

In Jimm's current state he can not be transferred to Hopkins for a second opinion, then return to UMMC.. if he goes there he will have to stay.
The family will be discussing this possible option during the weekend. They are also very upset about not being told things in a timely manner, and when they are told, facts come out in little bits and pieces. A meeting with all concerned staff is likely to be requested.

Update January 9th

When Jimm was found not breathing yesterday morning, a code(coronary emergency)was called, but reportedly his heart never stopped. It is not known exactly how long he went without oxygen, but the estimate is: not long enough to cause serious damage. Currently Jimm is not conscious, but is stable. His unconscious state is not thought to be deep because he has wiggled toes and fingers on command, and at times it seems he has been trying to open his eyes but so far has no one has witnessed that happening.
He is receiving fluids but no output from kidneys is present, and his blood count is low, leading doctors to suspect possible internal bleeding. They are awaiting CT scan results which may tell the tale on this. His BP is back up into an acceptable range without the use of any more pressors.
This recent crisis is still being blamed on the aspiration of something that blocked his airway.

Just before his relapse Jimm had been given ice chips with blue dye by mouth to see where it came out. Without getting too graphic, the stuff came out where they wanted it to.. leading us to believe that his gut is in pretty good shape considering all the modified plumbing. If Jimm can just get past this bad spot, they may be able to restart the liquid feeding that had been going so well.

On the second opinion front, Johns Hopkins Hospital now has Jimm's paperwork and they are working with Deborah to determine what doctors will take a look at him when he goes over there.

-day 226

Update January 8th

It is so disappointing to have to tell you that Jimm has crashed again. He had just moved to a regular room yesterday.. the very first non-intensive care room ever, but early this morning he encountered a setback. He was found unresponsive, and they think he may have aspirated something which cut off his oxygen and caused his blood pressure to go very low. He is most likely on pressors to raise his BP and has been given two units of blood. His temp was only 100 this morning, so it doesn't seem like the standard infection scenario.. but to be sure they have changed out all lines and are running an antibiotic. He is back on the vent for the first time in weeks, and has been returned to the fourth floor, SICU room 404.
Results of numerous tests and blood work will be forthcoming.
At this point Jimm is more or less stable but is not communicating. Will report as soon as we hear more.

Update January 7th

I had heard that Jimm was being moved today and thought that it might be bad news.. just the opposite. Jimm has been moved to his first non-ICU room. He is doing well enough that they don't need all the bells and whistles for support and monitoring. New room is G5 513. More details in the AM.

Update January 5th

Jimm got a haircut today and feels very positive about it. He has been sitting up in the chair and receives physical therapy most days. He is still not able to concentrate on things for long and continues to be quite tired.. probably added to by the PT which wipes him out, and yesterday's dialysis which does the same.

Deborah and Laura were due to leave him around 1:30 this afternoon so he can rest up for Jenna's visit later tonight and tomorrow.

To clarify something- we mentioned earlier that Jimm asked for his glasses and can hold a phone or TV remote better now.. that doesn't mean he uses these things willingly or with a high degree of dexterity. He would still rather have the phone held by someone else, and doesn't mess with the remote or even watch TV with any long-term attentiveness. The point is, he has gained strength and the ability to do more with his hands and legs, but still has a long way to go before engaging easily in many of the physical activities we take for granted on a moment to moment basis. It is important to note that he's talking better, and on a more regular basis than ever before. This fact alone is huge in making him feel more in touch with the rest of the world. And even though he does not yet have the ability to smile, he is doing it inside. Every so often his keen sense of humor shows itself in conversation. It is very good to see this happening.

Medically, his condition is steady and much the same as last report.. and his disposition is good.

-day 222

Update January 2nd

The room move has been made.. back upstairs to #766. Jimm took the move well and has had his pain meds, insulin and oxygen cut back, and his tube feeding rate increased again. He continues to do a lot of talking through his tube and his lower back pain has lessened.

Jimm's strength is increasing in his legs and hands. He can now hold a phone or TV remote more effectively, and has asked for his reading glasses for the first time. He is still quite tired, so he isn't able to concentrate on anything for long.. but the fact that he has requested his glasses, and can put them on and take them off by himself, is obviously really something.

Happy New Year!