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!