Update Dec 30th

Short but good report today..
Jimm is still in room 414 and doing well. He's pretty zonked but really looks good, talking a lot, sat on side of bed for 15 minutes today.. which he didn't really want to do, but did it anyway. Things like that only help his strength and balance. Got dialysis yesterday, and today his jejunostomy feeding rate was increased slightly.. a positive thing to be sure, since he has had so much trouble tolerating it in the past.

Update Dec 27th

Christmas Eve was not exactly as calm as in the poem. It was more like: 'Twas the night before Christmas, and inside Jimm's room there arose such a clatter with nurses checking in to see what was the matter.. Jimm's sugar level had been high and readings were taken every forty-five minutes. Not very conducive to Deborah having a "long winter's nap". She gave up and left around five AM.. and returned later in the day with other members of the family coming and going.
Jenna stayed for a short while Christmas night and returned to spend more time with her dad yesterday.

Jimm had dialysis yesterday and again today, with one liter of fluid draining off during today's session.
They have been trying the tube feed again.. no news as to whether or not it continued successfully into today. Recently he went to a separate procedure room where his main and dialysis lines were replaced. Jimm has been feeling OK, but is very tired with all the dialysis.

Deborah had a bit of a row with the people in records who said they couldn't find an important bunch of forms. She will face off with them again tomorrow, and when all is accounted for, the paperwork will go to Hopkins as planned.

Jimm is on the short list to move back up to the seventh floor.. and he probably will be doing that within the next few days.

-day 213

Update Dec 24th

His temp and blood pressure have been stabilized and Jimm is more comfortable today. He is looking forward to a visit from Deborah. She will go in this afternoon after work, and keep him company through the night. Christmas day they will be visited by other family members, listen to Christmas carols and open presents.

The staff has been treated to another round of delicious Revelle cookies, and those nurses who have to work tomorrow morning will at least be treated to a huge bunch of Christmas cheer emanating from room 414.. generated by a family making the best of it.. and appreciating what they have: a really neat, really brave guy named Jimm.


Many thanks, and Merry Christmas to you- faithful readers of this blog.
aw

Update Dec 23rd

Jimm had been doing very well Saturday until he had a setback around 5:00 PM. His temp went to 103, and BP went way down. They suspect a urinary infection, and that may or may not be to blame for a pretty intense lower back pain he is going through. He has been moved back down to SICU Rm 414 for closer observation.. but so far remains off the vent.
The family is hoping Jimm will get through this recent hit as quickly as possible and be able to return to the 7th floor soon. Everyone liked it there this time.

Update Dec 21st

Things have continued to be steady.. Jimm is enjoying being off the vent, gaining strength by talking using the trach collar. He has gone through some minor periods of anxiety, but is good in general.
The filter procedure done earlier in the week went well. It will all but insure against a DVT causing an embolus that may move up inside a vein and threaten lung or heart function. It was a relatively painless operation.

Much to everyone's delight, Jenna's mom Susan baked Christmas cookies for the nursing staff on both floors seven and four. Deborah will spend Christmas Eve night with Jimm, and Jenna will stay there Christmas night. The entire family will be in and out during the height of the Holidays.. what an incredible bunch!

All members of the Revelle family wish to thank the many folks who have written cards and given generously to the JR Fund during this holiday season. Knowing that caring friends are there is a big part of what gets them through.

Update Dec 18th

Since numerous episodes of bleeding have occurred, Jimm has been off blood thinners. In this state clots are a risk. A procedure was scheduled today that would insert a filter to prevent a pulmonary embolism from threatening his improving health. It may be a Greenfield or IVC filter, designed to prevent clots from traveling up the inferior vena cava, and inserted via the femoral vein in the leg or groin. Whatever this filter or mesh device is, Jimm will not feel it and it may be permanent or removed at a later time.

Jimm remains off the vent while receiving a small amount of oxygen. He is in good spirits, talking well through the trach collar, and even showing off a sharp sense of humor at times. He is receiving TPN (IV nutrition) plus saline, and is back on a Mon-Wed-Fri dialysis schedule. His appearance is very good and his arms and hands continue to heal well.

-day 204

Update Dec 16th

A room move back up to the 7th floor was accomplished this morning. Moves always upset Jimm a bit, but he's OK and has been doing very well in recent days.
He has been off the vent for most of the week, which is huge. He has been using the speaking valve and talking up a storm. He is getting some additional oxygen, but that has been cut down to 30% now.

New room is 768.

Update Dec 13th

The doppler ultrasound was looking for clots in Jimm's abdominal area and none were found. There have been no more heart issues, and a CT with contrast was done today looking for pulmonary embolisms.. results are not known yet.

Jimm has been off the ventilator for four days now. This is very good.

-day 199

Update Dec 11th

Tests revealed that Jimm did not have a heart attack last night, and no damage was incurred from the afib. They chalk the episode up to stress.

Today a Doppler ultrasound was done on Jimm's belly. He has had a very good day and has spent much of it in the chair, and on the trach collar. The more time he spends off the vent the better.. and he has been off increasingly longer times recently.

Update Dec 10th

Another surge of infection, most likely in the lungs, caused Jimm's pressure to drop quite low Friday evening.. but with medication the numbers improved.
Dialysis continues to be done often since his kidney function is minimal when his body is stressed with these other negative factors.

Over the weekend he was doing OK and spent much time sitting up in the chair(good for keeping lungs more clear too). He was moved close to the window, and even helped Jenna compose thank you notes to friends.

I wish we could end on that up note, but today around 3:30 Deborah was called telling her that Jimm had encountered an episode of atrial fibrillation. Nicknamed afib by the staff, it is an irregular heartbeat with its own unique set of indicators and dangers. It was thought that this may have been caused by all the strain put on his heart by the infections and marginal functioning of other organs. For those who might be interested his heart rate was 207 and RVR 200. We have no further news at this point, but Deborah is going in to see him tonight and we will try to get a follow up report in the morning.

Update Dec 6th

To obtain a second opinion Deborah had requested Jimm's medical records. For some perverse reason it took one week and three days for a denial to be issued. They told her that Jimm's signature was needed, and Deborah countered with a Medical Power of Attorney. So again we're back to a two week waiting period for the records.. but now Deborah has a more powerful legal standing in making medical decisions for Jimm. Guardianship documents and an Advance Medical Directive were also drawn up.. and there are now assurances that Jimm will be eligible for Social Security Disability. All of these legal documents and procedures are the work of Westminster's Catastrophic Health Planners and founder Lou Yeager. Lou had major medical problems of his own years ago, and ever since has specialized in assisting people like the Revelles who are in need of advice and guidance because of a loved one's catastrophic illness.

Lou and his organization was found by Kathy Cornell, Lee Ziemski and Erle Meinecke during their search for financial assistance. That search also yielded the Community Foundation of Carroll County, which enabled the Jimm Revelle Fund charity to be established. Good people do good work.

There are no significant changes in Jimm's condition today. He is still fairly exhausted, but resting comfortably.

Update Nov 4th

Dialysis yesterday yielded three liters of fluid, and due to inadequate numbers and more excess fluid, Jimm was dialyzed today as well. He has been, and still is, very tired. Probably contributing to that is a urinary tract yeast infection that has flared up.
Jimm has had his dialysis line replaced in his neck after a relocation to the groin for a couple days. Since he is still on blood thinners, great care was needed after closing down that site. He had to lie flat on his back for an hour with pressure applied to the femoral vein area. Lying flat is not the favorite position of someone with respiratory issues, so it was a long and uncomfortable hour.

Many of the nurses who take care of Jimm have done a very good job.. and as a reward, Deborah is baking them Christmas cookies and presenting them in cute little decorative bags.
Tasty for the staff.. therapeutic for Deborah.

Update Dec 2nd

When Laura left Jimm last night he was doing well. He was awake, talkative and getting dialyzed. Dialysis had been put off earlier in the weekend due to a bad neck port.. another spot was found and a new line installed, but in the meantime he built up some excess toxins which caused headache problems. That, and other related issues, caused Jimm enough pain so that he was put on morphine. When on that stuff Jimm often has problems with mental focus and reality tracking.. thus it wasn't used for long.
On Friday he was in the chair and on the trach collar for about four hours, but today the respiratory team wants him to rest. Not surprising considering all the lung and trachea trauma he has suffered recently.
Deborah and Laura will visit today, as Jenna is not able to be here this weekend.

Update Nov 29th

Stable with a normal temp is the report for today, but Jimm remains exhausted. It seems that the trach clogging episode on Monday was more severe than the family was lead to believe at first, and took quite a bit out of him. Jimm was turning blue and had to be intubated, with a scope entering into the process at some point.. then a heavily bleeding vein had to be cauterized.. and afterwards, air in his chest became an issue. As happens so often with our friend, it was not simple, and evidently put a good number of extra years on one particular respiratory therapist.

Second opinion update: The request for records has been made, but it will take about two weeks for them to be copied and delivered to Deborah. After that they have to be taken or faxed to Hopkins, and doctors will be assigned to analyze the case with levels of expertise to match Jimm's various medical needs. Only after that will he actually travel over there to be examined.
More on that as the process unfolds.
___________________________________________________________________

Yesterday's Applebee's Dining for Jimm Day was rewarding for all those present who we saw.. lunch and dinner groups were launched to up the ante as much as possible, and if you were able to go, we thank you very much and hope you had a pleasant time and a good meal. The results of the event will of course appear here, and on the Funding site as soon as we get them.

-six months hospitalized

Update Nov 27th

Jimm was very tired over the weekend. Part of that may have been dialysis which leaves him quite drained, another reason may be a lung infection the family didn't know the scope of until just recently.. we kind of knew that pneumonia in some form or another has been present often.. but this is an additional factor. The most obvious respiratory issue that was most likely the culprit in making him tired and causing breathing problems during the past few days is a badly clogged tracheostomy tube that was discovered yesterday. That has been replaced. Also, an irritated bronchial vein was found which may have contributed to bleeding. This in turn lead to the clotting which was partially responsible for the trach clogging.

Deborah is closer to being able to get a second opinion now that a hospital caseworker is helping, and the insurance company is in the loop. If things go as planned, Jimm will be ambulanced to Hopkins to be checked out soon.
Thursday it will have been 6 months since Jimm was first hospitalized. During his stay at University, he has suffered setbacks and been weakened by infection after infection. This examination by another team of doctors can't be a bad idea.
___________________________________________________________________
A note from Deborah's daughter Laura Andrews-
Copied in part from the blog's Jimm Greetings post:

I don't want to post a comment for Jimm as my family and I tell him regularly how much we love him and want and need him to get better!! I want to post this comment for all of Jimm's friends who have been so wonderful and so supportive through this horrible ordeal. THANK YOU ALL so much for all of the love, prayers, support, fund raisers, notes on the blog and everything that you all have done. You are all amazing and Jimm is so lucky to have you in his life and now all of the rest of us are so lucky to have you in our lives and we are so grateful!! We cannot thank you ALL enough!

Thank you and much love to you all!

Please keep praying!!

Laura

Update Nov 23rd

No move from room 432.. and no further success with the feeding tube. Jimm was having dialysis as of 1:30 today, and has spent increasing amounts of time off the ventilator.. which is of course a very good thing.
Dr. Jonhson will be on duty this coming week and the family hopes that he will provide clearer details concerning what's going on, and what the prognosis is for Jimm's case.

Thanksgiving day, as you can imagine, Jimm got numerous visits from family members.. and he was appreciative, but probably would have preferred dinner at home. Ya think?
Next year, we all wish for Jimm to have more than an IV in a hospital bed on this wonderful holiday.

aw

Update Nov 21st

Jimm was on the trach collar earlier today, and had dialysis this afternoon. No word on results of latest scans or blood work, but the fever is under control and he's doing well. Well enough to spur talk of a return to the less intensive 7th floor soon.

aw

Update Nov 19th

Jimm had a very good weekend. However, Deborah got a call from the hospital at 10:00 Sunday night that Jimm had spiked a fever and was being moved back down to the 4th floor so they could keep a better eye on him. More on the situation later today.
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Additional Update:
Saturday Jimm spent 8 hours on the trach collar and about 7 on Sunday. Both days he was talking away and enjoying visits from many family members, including Jenna's mom Susan, Deborah's mom Ellie, and Laura's boys. Much of the time he was able to sit up in the chair, and he looked sharp thanks to a shave and mustache trim by Deborah.
Late Sunday evening he spiked a temp and his BP went into the dumper. He was taken back down to the 4th floor SICU, where they administered pressors to get his BP back up, and fought the fever. Here, with one-on-one care, he would be better looked after. As a matter of fact, Kim.. one of the family's favorite nurses, called Deborah to tell her that Jimm would be well cared for.
They are awaiting results of results of blood work and a CT scan done today, but no further news regarding what caused this most recent setback is available yet.

Jimm's new room is 432.

aw

Update Nov 14th

The infamous tube feed, although just a trickle, has started to cause vomiting problems again. If it keeps up they will have to discontinue liquid nourishment again. So frustrating. TPN drip continues.

No dialysis has been done as of 3:30.. they may do it later today or wait until tomorrow. A new line was put in Jimm's neck today.. prompted by the removal of an older one a couple days ago suspected of harboring an infection, which he still has. This procedure ruled out trach collar use, and any chair sitting.. but our pal was in good spirits anyway, telling many of the staff to "have a good day"!!

All right! Keep that thought Jimmer.

aw -day 170

Update Nov 12th

Mandi and Deborah are with Jimm today, and he had dialysis so he's very tired.. but is doing pretty good. Mandi was putting lotion on his hands when I spoke to Deborah, who has had a stinky cold but is feeling a bit better. She has to wear a mask in the room as well as the usual gown and gloves.
Jimm was on the trach collar (speaking valve in.. the vent unhooked) for a very short while today. Dr. Lissauer says what they will try this week is Mon-Wed-Fri dialysis.. and Tues-Thurs getting out of bed and sitting up in the chair as much as feasible.

Tube feeding has been cautiously resumed at a very slow rate, and a central line in the left side of his neck has been removed for testing since an infection is suspected at that site.
Nursing care seems good.. better than it was at times back in late July on the same 7th floor.

aw

Update Nov 9th

To state the obvious, all of us following Jimm's case are very disappointed after having our expectations built up about so many things.. then, not having them turn out as we had hoped. Our job remains to hang on.. roll with the punches and be there for our friend with a stubbornly positive attitude. It's not easy, but look what Jimm is going through.
The most recent let down, postponing rehab, was caused by a number of issues.. one of them the intestinal blockage causing feeding tube probs. They still have not found out what is causing this.
The ventilator is not a deal-breaker, but has been a thorn in recovery's side for a long while. The experts say that some patients sort of get hooked on breathing assistance. They don't know if that is true in Jimm's case, but are thinking of disconnecting the vent without Jimm knowing and seeing what happens. If this takes place we will let you know.

Anyway.. he remains tired but is resting comfortably with only TPN IV and anything else only as needed.
They have scheduled dialysis Mon,Wed and Fri next week.. more often than usual.

Laura visited last night and took the boys along. She was told they could not go in. She told them that Jimm needs to see them, and they need to see Jimm.. call security if you want but the're going in. They went in to see Jimm without incident. Way to go Laura.

aw

Update Nov 8th

Not much to report. Jimm was very tired today.. yesterday he had a fever and by today it was brought down to about normal. He had a clot clogged central line at around noon. It was cleared in a couple hours and TPN was resumed. He needed two units of blood this afternoon to boost anemic readings.
When he was awake today he was in an OK mood.. and seemed moved by seeing a picture book from the rball tournament that Kathy had so kindly put together for him.
Deborah has gotten a nasty cold so she won't be able to visit for a couple days.

aw

Update Nov 7th

During a recent CT scan doctors found a large mass of fluid on Jimm's side. Drains are working to reduce that now.. but this doesn't seem to answer the question of what is blocking things up in the intestines that has again put an end to tube feeding. Last night it was said that they are in another "wait and see" mode regarding this problem, which makes it pretty obvious that rehab is not an option for a while.
Considering the fact that he wants outta there, and now that's on indefinite hold, Jimm has been in better spirits.

aw

Tournament Pictures Now Available- More RBall and Golf Shots Just Added

You can now go directly to the Flickr page for each tournament by clicking on link list on upper right of this page. We also urge you to go to Funding page and RBall page for more info on each event.
The Golf Tournament and Racquetball Tournament, held on consecutive weekends.. have together earned $7,550.00 for the JR Fund.
The organizers of the Racquetball Tournament have decided to make it a yearly event.

Update Nov 5th

The trip to rehab has been postponed, so no move out of the building has been made.. only one within the building. Jimm has been moved back up to the surgical step-down floor to room 764.
They are researching with a CT scan, and dye, the cause of blockage.. or whatever is causing the jejunum tube feeding liquids to come back up- and not go where they should go.. down. No trips anywhere until this, and a couple other issues are addressed.

Jimm is doing OK. His BP has needed adjusting with meds, but is under control. He got very anxious during the move, and it doesn't take much to get him that way it seems.. but most of the time he is good. He got a nice warm bath, with actual water and moisturizing soap last night. Most wounds and graft sites are healing very well, and he was able to speak through his trach tube the other day because something was screwed up with it. Here he is getting good O2 and the respiratory assist he needed, but was able to croak something like.. "I shouldn't be able to do this, but hey, I'm talking..", etc. What perverse fun for a short while!

He was told about the racquetball tournament and was glad to hear about the family visiting and how well it went.. but wanted to know who won. What a competitor.
The answer is.. Joe Cornell. Joe and his wife Kathy put the tournament on, and they have known Jimm for many years. He will be glad to hear that Joe won in the top Open/A Singles division.

aw

Update Nov 4th

Our friend's condition remains about the same. In the past few days he has been able to sit by the window, and has been observed wearing a Penn State cap while doing that.

As of Saturday they were still talking about moving Jimm to USH(they pronounce it that way.. ush as in usher)or University Specialty Hospital on or about Monday. If you are interested, you can review USH's various care plans on the website and check out its location. There they specialize in things like weaning patients off the vent, and have what they call a "medically complex care program".. sounds to be right up Jimm's alley. It has become clear that in many ways Jimm's drive down the bumpy road to recovery has become stalled. Maybe these folks can help him to begin a new improvement phase that will lead to a more positive medical future. Later, maybe he can move on to a more advanced facility like Kernan.. although other institutions have been named that may be even more suitable for him.

When the subject of this upcoming move has been brought up in Jimm's presence, he has become quite upset. So, in case you should see him before it happens, better not to mention the topic to him. Thanks.

aw

Update Nov 1, 2007

Things are about the same in Jimm's overall situation, with the exception of the feeding tube. It is installed way past the stomach in the jejunum but still causes vomiting often, and so that feeding route has again been discontinued.

Today, procedures have been approved to stabilize and strengthen the ports for TPN(IV feeding), and dialysis. This is in anticipation of moving Jimm from University Hospital to University Specialty Hospital. There, a different phase of rehab would begin. They are thinking of making the move as early as this coming Monday. We will see.

In the meantime, at Jimm's current location, where he has been for five months.. a new rule has been instituted. No visitors, including family, between 6:30 and 8:30 PM. This is the very time that the family members often arrive at Jimm's side. It is supposedly for confidentiality during nurses report, when they exchange information during a shift change. None of the family members are remotely happy with this new policy, and have asked that an exception be made since they have been operating under the old visitor rules for so very long.

Yes, we may be seeing Jimm moved out soon, but what rules will the new facility have? Perhaps even more strict. And what about the level of care.. all of these are of course unknowns at this point, so only time will tell.. but Deborah and the others are concerned nonetheless.

aw

Update Oct 30th

Jimm is doing all right. Tube feeding has been restored, and the vent and dialysis remain constants.
There has been discussion about another facility, University Specialty Hospital on North Charles St, where Jimm may go in a couple weeks if he continues to be steady. I haven't looked the place up yet but will do so soon. It evidently will take patients for rehab who are still not as fully weaned from devices and treatments as some, which is the case with Jimm.

We hope that his message reported on Monday's blog will open the door to more long term recalling of things that have happened and been said. So far he is still quite responsive, and if anything is problematic, it may the lack of a positive and determined attitude that sometimes creeps in.

aw

*A Message From Jimm

Nothing like this has happened for four long months, but finally here it is. As an indicator of a possible major turning point in Jimm's recovery, he has requested.. through Laura.. for me to put the following on the blog:

"Please tell everyone I said thank you so much for all you're doing and I miss you all".



I'm pretty speechless..
this post is open for comments if you would like to respond or offer your thoughts.

Update Oct 28th

No news has been good news.. Jimm is still going along well. This weekend he has done some chair sitting, and yesterday he wore his Penn State hat for the first time! His mood is good and he is communicating actively.

Light vent continues, CT scan done earlier today to check something out having to do with starting up tube feeding again.. only IV feeding has been done the past few days. Another urologist has been called in to give an opinion on mysterious blood in urine. But now, at least that's the only place bleeding is still occurring.

We told him about the golf tournament going so well.. and got him an Oakmont Green hat(where the tourney was held in Hampstead, MD). Now that he seems to be wearing hats again, that's pretty good timing.

aw

Golf Tournament Note/Update

The following reprinted from the Funding page-
The Jimm Revelle Charity Golf Tournament has been a rousing success. The weather broke perfectly, as planned by John through a previous arrangement, and a good time was had by all. That is a judgment made after seeing John and Harry careening about in their cart, laughing hysterically and having more fun than should be legal.. and Tracy and George in their "refreshment cart", grinning ear to ear and showing off hilarious photos of players, and a tip jar bursting at the seams.

A further report and pictures will be coming up.
---------------------------------------------------------------------------------------------------
Jimm has been doing about the same, which is basically good news.. more details will be on the way today.

Events Updates

We have word from John Valente that 44 people have entered the Jimm Revelle Charity Golf Tournament. That is great news. See more about the tourney, going on today Saturday Oct 27th, on the JimmFund page.. and late word from John below...

Hi Everyone-

Golf event is a go at this point. Unless we have heavy rain in the late morning/early afternoon Saturday, everything is on. Please call my cell phone for follow up if you have any questions.

717-465-5723

John A. Valente
Mortgage Consultant
Prosperity Mortgage Company
MAC M4011-021
1444 Baltimore Street
Hanover, PA 17331
Work - (717)630-0020
FAX - (866)526-3885
Cell - (717)465-5723
john.a.valente@prosperitymortgage.com
http://www.johnvalente.com

The Jimm Revelle Benefit Racquetball Tournament will be held on Saturday, Nov 3rd.. and you can find details about it on the JimmRBall page. Official close for player registration is Friday Oct 26th. However, some late entries may be accepted.

Update Wed Oct 24th

Monday evening Jimm had some bleeding from his stomach. An endoscopy showed it was his ulcers. He had been getting an antacid drip, and that continues. Even though the jejunostomy tube goes in well below the stomach, they have stopped feeding through that for the time being and are concentrating on IV nutrition. Blood is still present in his urine- they are not sure of the origin.. and the vent is now on a very low assist setting, so the lung clot must not be much of a factor anymore.

There is once again talk of selecting a rehab facility. It would probably have to be a place that would take him with a few strings attached.. like the need for dialysis, ostomies, drains, and the ventilator. It seems unlikely that he will be able to shed all of these peripherals anytime soon.

Jimm spent more time Tuesday in the chair, and is pretty darn perky compared to a week and a half ago. Friends are urged to visit, especially on weekday afternoons. He is evidently talking his nurses' ears off at times.

aw

Update Oct 22nd

We're glad to report that Jimm continues to be much more "with it" as compared to last week. Today he sat up in his chair for four or five hours, had dialysis and so he will be tired tonight, and they are once again trying to wean him off the vent.

Deborah and her mom were able to spend some time with Jimm today, and Deborah is very happy that things are better. She is off to the Quarter Auction with her friends in Rosedale tonight.

aw

Update Oct 21st

The big news is that today Jimm has come out of his delirium-like non-communicative state. He has been waving, talking and interacting.. much to the relief of all concerned. What the cause of the strange behavior was is not known, and predictably Jimm doesn't remember any of it.
The tube has been taken out of his nose, bleeding veins in his belly have been successfully treated, and he is receiving an IV acid neutralizer for his stomach.

It's a good report.

aw

Update Oct 19th

Jimm has not been feeling well at all today, and has been sick often. Because no brain scan or other evidence of physical problems has been observed, for the time being they are treating his communication shut-down as delirium, and, in an attempt to improve matters, are trying to cleanse his body of as many drugs as possible while still keeping him reasonably comfortable.
Still wait and see on the clot, which is still there. Sounds like they will wait as long as necessary for it to dissipate by itself, especially since airflow is better and the vent is down to 40% assist.
No bug ID yet..but no temp either, and other vitals are solid. New jejunostomy is taking in food well and IV nutritional feeding is also being done.

aw

Update Oct 18th

No change. The clot is still about where it caused the trouble.. at the intersection of the two primary bronchi. Because it landed right in the middle, it was able to shut Jimm's air off completely on Tuesday stopping his heart momentarily. It has gotten smaller so that air is passing around it. As reported yesterday, it remains a wait and see situation.

Jimm's inability to communicate continues. Despite making eye contact, he does not talk or follow commands. A scan has found no sign of a stroke, so maybe Jimm has just taken a break for a few days. It is not thought to be a conscious choice, but the body works in strange and mysterious ways when it comes to protecting itself from stress. We just don't really know what's going on at this point.

The bug, and the source of the most recent infection, has not been found yet. If memory serves, the now famous MRSA has gone through Jimm at least once. It's a good guess that he has had every nosocomial super bug that exists.
Today a new dialysis line is being put in, and dialysis will be done this afternoon.

aw

2nd Update Oct 17th

They have been continuing efforts to dislodge the clot, by dissolving it, and by physically removing it. No success yet, but they are taking their time for now because Jimm is breathing OK with the vent turned down to about 70%.
If there is no further success with other methods, the thoracic surgeons will take over. Surgery will be a last resort considering the obvious inherent dangers. It is doubtful they will try it today unless Jimm gets worse.

Another new infection is being cultured to prepare an antibiotic, and Jimm's NG tube is still in place even though the new jejunum tube is feeding him at a good rate. Thankfully, he is stable for now.

aw

Update Oct 17th

Early review of last evening's alarming event:
Yesterday I got a call from Deborah at 5:10 PM. She said Jimm had a clot in his lungs and was in trouble, and that the family was being called in. In fact, she had been directly told by one of the doctors that his chances of survival were slim.
The update of Oct 16th at 5:30 PM was based on this call. The only info I could get from her in her hurried and distressed state was that they had something down in his lungs trying to get this stuff out, and that his heart had stopped once earlier during the crisis.
Thus, the mention of the pulmonary embolism, often a life-threatening occurrence, and not uncommon in patients like Jimm. In fact, a fairly rare thing had happened. A sizable mass of coagulated blood, a large clot, had built up somewhere higher in his throat and dislodged. It went down through his trachea to the bronchi and managed to shut off the airflow to both lungs causing his heart to stop for a short period. According to the docs, the 6 minute mark is seen as the danger point, but his stoppage lasted less than a minute. Most likely a bronchoscope was used to try and pull the largest clot out. They were successful enough to stabilize Jimm overnight with the vent working as hard as it ever has, but more needs to be done this morning. Also they will need to analyze where this mass came from. One early guess was that it may have come from the the problematic bloody tracheostomy tube. That will be discussed in a meeting of doctors today.
All I can say is that I am relieved for the time being.. I really thought that Laura's call at 9:15 last night was word that we had lost Jimm.
He had a tough day, and has had a tough four and a half months.. but he is still here.

Hang in there with me.. I'll see if I can get anything further later in the morning.
Thanks for being there.

aw

Second Update Oct 16th

Jimm is still with us.
He had a large clot in his airway down near his lungs that shut off the air to both lungs for less than a minute, but long enough for him to code and his heart to be restarted. That means there is a likelihood of no permanent organ or brain damage. He seems to have dodged the bullet.
The family has left the hospital for the night believing that Jimm is stable, and will see the morning. In the morning, docs will have a meeting to determine how to get the clot out completely.. since they were successful in getting only some pieces of it out tonight. They will also try to figure out where the thing came from.

More as we get it in the AM.
Get some sleep.

Update Oct 16th

A note about the following: a pulmonary embolism was not what actually happened to Jimm. From the emotional first report, that's what it sounded like.. but it turned out that the clot was not in an artery, but in the trachea.. cutting off air instead of blood supply. Both of course are dangerous, and Deborah was told this day that Jimm's chances of survival were slim.
This note is kept here as a record of how the event was recorded at the time.. a scary time to be sure. aw

Jimm has suffered a pulmonary embolism. This means that one or more clots have reached the lungs. Procedures are being done to try to remove them.
He is on the ventilator and his heart has already stopped once.

The family is coming in because things don't look good.
If you pray, do it now.

Update Oct 15th

Jimm's bleeding on his lower right side is still an issue, as is the anemia. He received two units of blood today. A CT scan will be done soon to determine the source of the problem.
The jejunostomy, which enables liquid food to be introduced into the intestine at a point close to the stomach, was completed Friday, and Jimm is being fed via that method now. It is hoped this will let the stomach rest and that it will begin to function better at a later time. He is still on the vent.

In the past few days Jimm has not always been communicating as willingly as before. It may be due to feeling low about the whole situation, and if that's it, he just needs to snap out of it. The family believes that reinforcement and encouragement from good friends is one of the best medicines Jimm can have right now.

Deborah has been given a list of possible rehab places to consider.. the thought being, if he keeps doing well, he could be out of the hospital in a few weeks.

aw (day 140)

Update Oct 12th

The stomach problems persist. Things won't stay down, and the bizarre greenish secretions continue. An external tube to provide nourishment going directly in somewhere below the stomach is being planned. Maybe a jejunostomy for enteral hyperalimentation no less. An NG tube has been used for all stomach feeding and aspirating up till now.
There is still evidence of blood in Jimm's urine, and that is thought to be from the constant use of a catheter. They are taking that out today. There is also blood coming from a drain on his lower right side. With all this leaking it's no wonder that Jimm has been anemic for some time. He was given one unit of blood today.
Lung issues are being addressed by the respiratory therapy folks and he remains on the vent most of the time.

Rehab is being looked at in one of the more comprehensive and aggressive places like Kernan, which is owned by the University of Maryland Medical System. Before going to such a facility, Jimm will have to continue to be stable for a couple more weeks, and make some progress in the gastro and respiratory areas.

Jimm is always dealing with negative feelings but he's been doing some sitting in the chair and actually stood by himself by the side of the bed for a few moments.. a big deal. Also, he recently got a ride down the elevator to the lobby. Reportedly, he was chatting away with his trach collar much of the time.
That had to feel good to him.

aw



.

Funding Update

We hope to have news on Jimm tomorrow.
In the meantime, please check out the impressive new totals in the Fund.

Thanks.

The Jimm Revelle Benefit Racquetball Tournament

The racquetball tournament for Jimm is near the close of registration and has its own page. Please go to http://jimmrball.blogspot.com to get more details.
This is an event that Jimm would love to be involved in and will definitely get a kick out of hearing about.
Please support it however you can.
Thanks.

Update Oct 10th

The only news we have so far is that Jimm spent some time sitting in the chair today, and that he is quite low and in need of friendly faces.. especially in the early to mid afternoon when the family is less likely to be there with him.
Go see him this week if you can.

Deborah will be there this evening.

aw

Update Oct 8th

Oxybutinin or Ditropan, an antispasmodic/anticholinergic drug for bladder issues, was causing Jimm to get the shakes a few days ago. It has been discontinued and he shakes a bit only when exerting himself lifting his arms. He is still quite weak.
Jimm's urinary bleeding was investigated with a cystoscopy today, and nothing substantive was found. However, urine will be sent to an outside lab for further testing.
The trachial bleeding has for the time being been blamed on the installation of a new downsized trach tube.. a positive step. But a complete endoscopy will be done soon to check his entire digestive tract. Of special interest is his stomach which has been problematic in a number of ways.
Today, in addition to the cystoscopy, he was dialysed and so is one tired cowboy right about now.
The temp spike on Friday was traced to an infection in his central line which was quickly removed and actually has not been replaced as of earlier today. With no mechanism to administer sleep meds, this led to a sleepless night Saturday. He is still getting insulin as needed.. pain meds as needed.. IV feeding of some sort(TPN or PPN), and is still on the vent which has been dialed back as much as possible. Getting off that device is seen as a necessary step in further improving Jimm's condition.

Jimm has been very tired the past few days and this has made it tougher for family members to communicate with him. He hardly moves his lips when fatigued like this. He does seem to better understand where he is, and he now fully realizes that he has an ostomy. He of course is not happy about that and has been depressed at times. Currently he has a good bunch of nurses who understand the situation and push Jimm to do more. At this point he needs that.

aw

Update Oct 6th

Our buddy has been more awake, and his mood pretty positive. He hasn't been sitting up in the chair anymore since earlier this week, but recently did enjoy a sit on the side of the bed for a while until he got tired.
No word yet on what caused that bleeding we mentioned earlier. The insulin drip has been replaced by occasional shots as needed following daily blood sugar tests. Jimm is still on the vent at low pressure, is on IV feeding because of continuing bad luck with tube feeding, gets dialysis every other day, and despite a temperature spike last night(it WAS Friday after all) is much improved today.

Jenna, who has always been a faithful weekend visitor to her dad, will not be there today.. so Deborah will keep him company.

aw

Update Oct 3rd

Yesterday and today there has been a bit of blood in his urine, there is also blood in his trach tube which they are going to investigate this afternoon. Jimm is regurgitating some of the fluid in the intestinal feeding tube.. not clear at this point why that is happening. He has had the shakes a bit, and that has led to a medication change we will get more info on.

The graft donor site looks good and the stomach grafts have continued to take quite well. And it is good to note that Jimm now has another key goal besides getting off the vent, and that is being able to sing happy birthday to Jenna on October 26th.

aw

Update Oct 1st

Jimm sat up in a chair yesterday for about 4 hours. He continues to do well, with very little pain, and is a bit sharper and seems to be remembering things better than he was on Friday. He spent some time off the vent and talking also yesterday.. and his tube feeding rate was increased.
He is a little depressed, but is exercising each day.. and, as mentioned before, is making a concerted effort to get off the ventilator.

aw

Update Sept 28th

Today's report is good. Jimm spent about four hours on the trach collar(speaking valve or speaking tube.. whatever you want to call it)today. The rest of the time he is on the vent. A deal has been struck between Deborah and Jimm that the goal is to get off the respirator completely as soon as possible.
He is on pain meds as needed, and luckily that isn't a lot recently. Kidneys are doing pretty well, so dialysis is mainly taking fluids off.
His grafted area is looking very good.

He has been right talkative, but still thinks he is back at Upper Chesapeake(in fact that was in late May-early June). They have had him look out the window at the stadium.. but don't think he really has the whole picture yet.
Still, considering all he's been through, he's doing well.

aw

Update Sept 25th

Things went well during surgery last night, tightening and grafting the bottom part of the surgical wound site. Grafts were taken from the thigh.. from a smaller area than last time when they came from the side of the abdomen. This procedure is seen by the docs as one of the last major hurdles prior to rehab. As said before, if our boy can stay free of debilitating infections, they may begin talking about the possibility of that major move away from the hospital. In rehab he will be much more aggressively removed from the vent and receive increasingly intense PT.

Those direct questions to Dr. Dexter that we spoke of recently included:
-Are his stomach and intestines intact? Yes, and he may eat normally in time.
-What is the status of his pancreas? There is only a residual amount of the pancreas left, so he will be diabetic and need insulin.. his need for digestive enzymes and other aids of that sort will have to be determined after further study.
-As for other procedures such as fistula and hernia repairs, and realignment of displaced organs.. some may be elective, others become necessary. We'll know more later.

Today Jimm was on the vent to let him rest, getting meds for pain as needed, in a pretty good mood, and more awake than he had been over the weekend.

aw
(day 120)

Update Sept 24th

Jimm had a good day today. He had dialysis and was a little more awake. The stomach site grafting was not done during the day, but is planned for between 5 and 9 this evening.
Mandi and Deborah are visiting tonight so we should know tomorrow if and how it went.

aw

Many of our readers are associated with MPT, and it has been noted that another member of the MPT family is involved in a health struggle: Mindy Mintz's husband Monte Mordecai will be undergoing surgery soon for esophageal cancer. Our thoughts are with the entire Mordecai family during this critical time.

Update Sept 22nd - And An Orioles Game Note

On Monday they are planning to do the final grafting on the main surgical site. As long as Jimm can stay away from infections and other backslides, and get rid of a few drains here and there that are seeming to run dryer all the time, this graft will be the last step until more serious rehab can begin. During the rehab Jimm will be much more aggressively weaned off the vent and other medications.
As of now he is off the Fentanyl drip and is being given meds for pain only as needed. Today he had dialysis, and it was said that his kidneys are actually putting out pretty well. He was very tired and conscious only in the 50% range. He has been tired most of the week, but some of the reasons may be: enough dialysis to drain off 5 liters of fluid, non-bacterial pneumonia.. perhaps caused by aspirations, and a lot of coughing that will probably lessen when they are able to raise him up in bed a bit more.

Dr. Dexter, who is a surgeon on Dr. Johnson's team(and who is around much more often than the super-busy Johnson), has been helpful in answering questions that the family has about Jimm's condition and the prognosis for the future. More on that soon.

Interesting note:
Recently, during an Orioles Camden Yard game, one of the commentators mentioned Jimm and the fact that he was ill. They took shots of other camera guys waving and wishing Jimm well. It is so fantastic to hear about this.. and Jenna told Jimm about it today. It was one of the rare times when he had an expression of joy on his face. If any of you freelance folks know when this happened, and if a tape of it could be obtained to show Jimm, that would be so amazing. Please try. Thanks.

aw

Update Sept 20th

Yesterday the vent was unhooked for a while but Jimm was put back on it last night and stayed on much of today. He continues to be very sleepy.
Dialysis is done usually every other day and the effort will be concentrating on fluid removal which has him more puffy than usual.
The fistula is now a real ostomy, with not just drainage, but a tube, bag and suction pump.
Jimm has had some blood in his urine, but they don't seem too concerned.. blood has also recently been found in his trach tube(origin unknown), and the family has just been made aware that he has had pneumonia.
More skin grafts are tentatively planned for Monday.
Also on Monday, Deborah hopes to discuss poor communication and inconsistent care with a patient advocate.

aw

Update Sept 19th

It has been observed that every so often(especially when the head honcho Dr. Johnson isn't around)the level of Jimm's care sort of declines. We seem to be in one of those periods now. He spent most of the weekend sleeping with maybe a tad more Fentanyl than he needed.. and he has been kept on the vent and has become pretty dependent on it. Additionally, not all of his nurses have been totally into keeping him and his area as clean as they might. These kinds of things drive the family members nuts. Complaints have been lodged.

Many folks have been very bravely going to see Jimm. This is good, but as we have discussed before, such visits are not always easy. An old Air Force buddy Bob, and his wife Debi, went to see him this weekend and reportedly he was not awake enough to be able to communicate much. So disappointing. But we all have to hang in there and keep trying. Thanks so much for all you are doing in that area.

Today dialysis was done, pain meds decreased, and he was taken off the vent for a while to fend for himself.. not comfortable for him, but necessary.

aw

Update Sept 17th

Happily not much new to report on Jimm. BP had been down, but now it is better and he is off the pressors used to boost it. He continues to get dialysis as needed and remains on the vent.
Deborah is spending time with him today.

aw

Update Sept 15th

The family stayed late last night, until about 11:00 PM, and things were good. Jimm is steady and his mood has continued to be positive.
Jenna has been with him today.

aw

Update Sept 13th

IV Feeding has been replaced for the time being with liquid introduced into the jejunum, and if there are no adverse indications they may turn up the spigot a bit tonight on that. Jimm remains on antibiotics and Fentanyl for pain. The perverse bleeding issue of last week was caused by abdominal vein blistering, which occurred because of all the trauma in that area. Flow has been stopped as reported earlier, but during the problematic period a good amount of FFP was used, as well as an undetermined amount of blood.
There were plans to do more skin grafts on the belly, but that will probably be put on hold due to clots in both arms that have been found. They will have to be cleared before any other procedure is done.

The fluoroscopy that was done yesterday to examine his GI tract for more fistulas did not yield needed info, so it will have to be redone.

Jimm had physical therapy today, and although still more comfortable with assistance from the vent, has been in a good mood. In fact, according to his nurse, he has been "animated".
A number of folks have been visiting Jimm in recent days, and we have to think that seeing friends has been an attitude booster. Many thanks to everyone who has dropped in on Jimm and who is planning to!

aw

Update Sept 12th

Jimm still has a TPN line for IV feeding, so the result of his jejunoscopy yesterday, to find a place for food introduction that will encourage better absorption, is not known. He is still on the vent and so is usually unable to talk using his trach tube, but his numbers are good. Today he had a sonogram to check his neck veins for clots, and was due to get a fluoroscopy to look for more fistulas and other abnormalities in the intestines.
He was a bit groggy on pain meds, but responsive at times.. enough to appreciate visitors.

aw

Update Sept 11th- Room Move

As last post indicated, Jimm's weekend was very good. He is as aware as he has been and in a positive mood. Today they are inserting a feeding tube endoscopically into the GI tract past the stomach to see if it works better there.

His bleeding problem has been addressed and has been stopped. He is still on a mild vent assist.
He was moved to room 420 yesterday.

aw -d 106

Update Sept 10th

The weekend report was pretty positive. Jimm was in good spirits Saturday and on the vent only for mild assistance, so he used his trach tube to talk until he wore himself out. He has accumulated some tissue fluids, and dialysis on Monday will help to reduce that. Now off the 24 hour dialyzer, he will be hooked up every few days to a machine as needed.

Monday is the day for rounds and conferences to determine the patient's status, and for mapping out the care plan for the week. So with any luck, today or tomorrow we should hear more details about our pal's condition.. including the latest on that bleeding situation that was so worrisome last week.

aw

Golf and Picture Note Sept 5th

John Valente, a good friend of Jimm's and MPT alumnus, is exploring the possibility of a golf tournament to benefit Jimm and his family. Please see info about this on the JimmRevelleFund blog.
Also take a look at some of the new pics on JimmPics. You will enjoy them.

aw

Update Sept 5th

Today(Wednesday) Jimm is scheduled to go to IR, interventional radiology, so they can look for the source of the bleeding. The plan is to inject a contrast agent, go into the femoral artery and find and embolize the damaged area.

Since he can't keep liquid food down, and it's not being properly absorbed for some reason, Jimm is still being IV fed. He is on the vent and on the 24 hour dialysis machine.. has been put on a new antibiotic, and in spite of all this he looks good, and is better than he was yesterday. A visit today would probably not be advised.

Interesting note: Although we did not have info on this before, it seems that the main abdominal operative site has been essentially closed. He still has numerous holes here and there, but that is no longer one of them. However, if you are a faithful reader, you will recall that even though closed up now, that wound will eventually have to be reopened and other work completed before all is said and done. Additionally, the fact that this closing surgery could happen and sort of slip by members of the extremely interested family, indicates a continuing serious shortfall in communication.

Update Sept 4th

The persistent bleeding is now thought to be from a vessel in Jimm's abdomen. An angiogram or MRA will be done soon to locate the source, then it will be repaired using a special stent or an injected clotting agent.

Jimm's consciousness comes and goes. If you are someone who wants to go see him, admittedly you may not have a meeting that is rewarding to you.. but even if Jimm retains a small part of the encounter.. it could be hugely rewarding to him. If we put enough of these together in a consistent way, they could make a big difference in the way Jimm is able to pull himself together emotionally. One of his biggest problems now is depression. When he is awake enough to know what's going on, he doesn't see a very pretty picture. If there is a caring pal in his memory banks somewhere, that can only help.

Please see new info in the *Visiting Jimm post- available in archive list on the right. Thanks.

aw -d 99

Update Sept 3rd

There is still bleeding and they are not sure of the origin, but Jimm has had replacement blood and plasma over the weekend. His temps have been a bit elevated, and dialysis was started yesterday but stopped due to low BP.
On the good side he is back off the vent and talking using his tube.
He is responsive and still needs folks to visit him.

aw -d 98

Update Aug 31

The bleeding turned out to be minor. There was evidently not a lot of blood in Jimm's abdomen after all.. but the reason for the bleeding is not known. No whole blood was needed, but there was word of some plasma. Because he has been very weak, and to assist in blood clotting, Jimm was given vitamin K and others today, and dialysis was done. During dialysis about 2 liters of fluid was removed, helping to reduce tissue swelling. Part of that swelling was due to earlier fluid drips during his time of low BP and high fever.
His temp was down to about 99 today.. a marked improvement.. and he is back on a pain med drip.
He was feeling better today and was awake and responsive from time to time.

aw

Update Aug 30th

Last night Jimm had dialysis and later in the evening it was discovered that there was blood coming from his abdomen. It was packed to stop the flow. They have scanned him and it looks like there is some more blood in his abdominal cavity. At this point the cause of the bleeding is not known.. will check in soon to see if we can get more info on what's going on.
Today Jimm is pretty much out on sedatives due to the pain involved with last night's ordeal.

aw -d 94

Update Aug 28th

Jimm aspirated some stomach discharge last night and spiked a 102.7 temp.
His kidneys have been putting out pretty well during the past week but can't keep up totally, so dialysis will be happening soon.
He is weak today and will need rest.

aw

Update August 26th

Friday night another temperature spike occurred, and for the first time it is thought that this may be the same bug just hitting Jimm again. The infectious disease guys don't really seem to know the origin of these in many cases and so they get him cleaned up, change dressings and replace tubes and drains, etc... trying to minimize chances of the infection sticking around and weakening him further. Jimm encountered another tough night Saturday, but during each day he has gained a bit of strength and is talking well and getting pain meds only on an 'as needed' basis. That means he is pretty awake much of the time, and could use a friendly face even if it's for just a few minutes. He is often on the vent at night so he can rest, and off of it during the daytime so he can communicate by talking using his trach speaking valve.

I know it's scary thinking about seeing him so sick, but we are hoping a few of his closer pals will take a shot at it. Once you do it you will learn the ropes and be more able to visit with confidence as he continues to improve.. which he will.
Thanks so much for being there.. all of you.

aw -d 89

Update Aug 23rd

He had another MRI yesterday and his lungs looked OK. Jimm has a strong enough cough to cause trouble with his mouth feeding tube so they have put him back on IV feeding for the time being. He is being weaned off the vent.. again, and has not had dialysis for a while because his blood pressure hasn't been up to it.
He is stable though, and doing pretty well.

aw

Update August 21st

Late Sunday evening Jimm's heart rate and BP dropped and he began having trouble breathing.. you should be able to nail the diagnosis by now.
Infection #6.
MRI showed enough pleural fluid to restrict breathing. The rest by rote: pressors to raise BP, more antibiotics, fluid removed, drains replaced, infectious disease(ID)doc on the scene, increased pain meds, back on vent. Yesterday, new belly bandage, two bags of frozen plasma.

Surprisingly, Jimm was fairly responsive yesterday. Either it wasn't as much of a hit as he has had in the past, or his body is getting more used to dealing with this.

Longtime friend Lee Ziemsky visited yesterday, and Jimm was glad to see him.

aw

Update August 19th

Jimm is awake and talking today(using his tube).. and the nurse on duty says he needs visitors to take his mind off things. Wow, that is so good to hear.
He is off the 24 hour dialysis machine and should be able to come off the vent very soon.
See the following note on visiting for specifics about times, etc. When you can, go see Jimm while he's feeling better!

Financial Update Aug 18th

Contributions are starting to roll in.. and that's great. They will be put into the JR Fund when it's official this coming week. We have received generous checks from Tony Guiffre and Ann Klimas, and the new funding blog is ready to go at any moment. For now, keep up on activities by looking at the *Contributions* blog available in archive list on right.

aw

Update August 17th

This morning Jimm had surgery to clean out an abscess on his side. 400cc's of fluid was removed and the area cleaned out. A nearby drain has been readjusted to make it work more efficiently. He is tired right now, but doing pretty well and his numbers are good.

aw

Update August 15th

Better news today- Jimm is now on milder pain meds and is off the morphine. He is also off the ventilator and is using his speaking valve more(we think Jenna may have read him the riot act). He is on the 24 hour dialysis machine that is more gentle and does a good job of removing fluid buildup. An abscess on his left flank will be addressed tomorrow by Johnson and his team.
Deborah got no less than three calls from the hospital today offering info. The "squeaky wheel" syndrome at work.

aw -day78

Update August 14th

Deborah, Laura, Jenna, and Mandi met with doctors and other key staff members yesterday. Steven Johnson, head of the surgical team, was especially interested in what the family had to say. They spoke of not being notified in a timely manner when a significant change occurs in Jimm's condition; not having that change explained in detail afterwards; inaction, rudeness, sloppiness and possible carelessness on the part of some nursing personnel; lack of responsiveness on the part of certain medical teams; and lack of efficient communication between the various medical teams*. Deborah displayed pictures she had taken to drive certain points home. It is hoped that this will cause Jimm's treatment to improve.

Since taking a turn for the worse Tuesday night, Jimm has suffered a severe backslide in his status. He picked up an infection(no one has really been counting, but it seems to be perhaps the fifth hospital-acquired bacterial infection), spiked a temp and began to become septic. He is now on an antibiotic cocktail of four or so drugs. He had a respiratory issue that was finally explained as very shallow breathing that resulted in insufficient oxygen intake.. he was put on a respirator again. His BP declined so that he once again needed meds, often called simply pressors, and fluids. His kidney performance worsened, therefore more dialysis would be needed. He was in need of no-nonsense pain meds and was given morphine. He developed a facial twitch which doctors don't seem worried about and which has decreased with the lowering of the morphine dosage(connection?).

During these days, in which he was set back further than he has been for a long while, there were other occurrences such as drain jostling during a flip, and clogging of at least one drain resulting in a buildup of internal fluid.
As a result of the morphine dosage he has been unconscious and unresponsive.. to look at it optimistically, he is resting, and should be able to gather strength and start to heal again.
The next moves will be to continue lowering of morphine.. continue fighting the infection(the ID team has done cultures and knows what it is- we don't).. weaning off the respirator and BP meds.. pressing on with dialyzing(now more fluids are again present that beg removal too).. and hoping he is as responsive as he has been able to be in the past.

Kudos to the family for standing up for Jimm. Now it's time for everybody, including the Jimmer, to give it their best.


*numerous teams are involved in Jimm's complex care such as: surgical, pulmonary, plastics, nursing, infectious disease(ID), and numerous others.. and as you can imagine coordination of treatments among all these parties, some of which don't see particular patients that often, is not always easy- but critically important.

aw -day77

Update August 12th

Friday night Jimm had a 102 degree fever and an uncomfortable night. He is still on heavy pain medication, has undergone some swelling again and his BP has been too low to do dialysis for three days. They hope to do that tomorrow. The infection is not yet under control and they found a clogged drain that may have caused pooling of infected fluid in his abdomen. The drain has been replaced.
As of late Saturday evening he was resting more comfortably.

The family hopes to have that meeting with doctors and nurses Monday or Tuesday. Not only is the communication poor between medical teams and the family members, but Jimm doesn't seem to be tended to in a manner he is in need of, and the room is not being kept as clean as it should be. All that will be discussed at the meeting.

aw -day75

Update August 10th

Due to an new infection and a "respiratory issue", Jimm was moved back down to SICU on Tuesday night. It is now Friday, and the family still has not been able to find out what that "issue" was. They are not happy with the poor communication between the medical teams and them, and between the medical teams and the nursing staff.
The family has asked for a meeting with the docs to find out what is going on(that probably won't happen until next week at this rate).
They are also in close communication with a patient advocate and social worker.. and, someone who has been helpful in the past.. a friend at the hospital who is in charge of guest and volunteer services.

As for Jimm.. and this seems unbelievable.. he has contracted yet another new infection on top of the one mentioned above. He is on rather heavy pain meds and has developed a disturbing facial twitch that was not there before. The fun never stops.
___________________________________________________________________

Financial note- we have obtained papers to be signed from the CFCC that do not jibe with what the Foundation's lawyer has told Lee Ziemski(one of our group's main contact people). Lee will get clarification asap so things can move ahead.
___________________________________________________________________

Jimm has been moved around a lot. See new room assignment record in archive section.

aw -day73

Update 2 August 8th

The reason for the return to SICU.. it seems Jimm has picked up yet another infection and suffered another setback. Drains and lines, including the CVC, have been changed out and he is back on the respirator.

aw

Update August 8th

Jimm was moved back down to Surgical Intensive Care(SICU) during the night.
Respiratory issues is all we know at this time.
He is on 4th floor room 402.

Update August 7th

Dialysis was done yesterday which lead to Jimm being pretty exhausted and out of it last night. The closing looks good so far. All is quiet, and not much else to report.

aw

Update August 5th

The procedure was completed Friday evening and grafts taken from the abdomen. Jimm spent most of Saturday in recovery and was given 7 units of blood in all. They almost sent him back down to SICU, but that did not happen.. his BP finally came back up and he stabilized enough to go back to his 7th floor room. The closed and grafted upper section is about 6 inches long, and we all hope for good news concerning the grafts 'taking'. Healing will take place for at least a week before anything further is done.

This afternoon he was on pretty heavy pain meds following a dressing change, but still closed his eyes and shook his head in amazement when I told him about his pal Tony working for him to donate his paycheck for the day(see August 5th section of Contributions-Fundraising.. and see also the notification of Longaberger activities from Dinah Seisman).

aw

Update August 3rd

The top half closure was finally done today in the late afternoon. If it goes well this is a positive step that may help Jimm get out of the funk he has fallen back into.

Regarding the fistula, the external opening is in fact up high near the stomach. See this page for an illustration that shows how close the transverse colon is to the pancreas- the original source of trouble. It's on a kid's site that gives some good straightforward info on the human digestive system.
No further mention has been made of the "other" fistula(as reported on July 27), so we're hoping it doesn't exist. That would be great.

aw

Update August 1st

Deborah has been in touch with Dr. Johnson and he says the plan is to close the upper portion of the main incision today or tomorrow, complete with grafts.. then after it heals for two weeks, do the rest. With this two-pronged approach they hope to minimize the problems with finding a way to drain off the pesky fistula (which sounds like it may be up high in the colon.. maybe in the transverse portion.. if I find out more I'll let you know). After all closing is done they can start more serious feeding routines.

Even though the trach speaking valve works pretty well, Jimm doesn't like using it because of the breath it takes. Despite this, he is communicating better by moving his lips and sort of whispering. His strength is gradually returning so that now he can probably push the nurse call-button, so maybe he'll be able to write more soon.

He is still getting antibiotics, and now also iron. His color is good and his feet and legs are getting skinny.. they were quite swollen before. He sits up in a chair at least an hour each day(which actually helps keep his chest clear), and is in a more positive mood than a few days ago.

aw

Contributions and Fundraising - Please Go To JRFund

This post has been left as a record, but is now inactive. An active copy of it is on the funding blog. Thanks.
We know now that Jimm's recovery will be lengthy and expensive. This is the place where questions, ideas and news about various efforts to raise funds can come together.

So far we have a racquetball tournament in the works, two Longaberger events planned, and a suggestion for an eBay auction. A freelancer friend of Jimm's, Eric Weinstein, is going to be in touch with a Penn State alumni group to see what they might be able to do. Work friends of Deborah's have held a bake sale to lend a welcome hand, and a bunch of Jenna's pals have given her a thoughtful gift card for gas money and snacks on the road.

Also, as you will see mentioned in other notes to follow.. a bunch of Deborah's Walmart associates raffled off one of the newly published Harry Potter books and earned her some spending money; Jenna and some friends in the Upper Darby area of Philadelphia are planning a charity Beef and Beer event; our friend Tony Guiffre has contributed a generous $250.00 which will be applied to the JR Fund when it gets rolling; Jeff Wachter has offered to give $150.00 from his next mortgage transaction; Ann Klimas from MPT has kindly offered a donation of $200.00; and I will be contributing $150.00 as soon as we get Jimm Revelle Fund approval.
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New note- July 2nd:
The racquetball tourney date looks like it will be Saturday, November 3rd. Kathy Cornell is looking into a special bank account for contributions.. and arranging non-profit status so a tax write off would apply.
In the meantime, since the tournament is some time away, we are looking into a simple direct donation account too. This would enable anyone to simply send in money- what a novel idea!! So, save your mad money and hang on while we plan for this.. and watch this space for constantly updated info.
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Also July 2nd: A good friend has suggested a motorcycle charity ride for Jimm and Deborah.. a great idea that would be tons of fun, and earn a sidecar full of bucks too. I'm not affiliated with a club, but would happily join such a ride. If you are a biker, please find out if there might be some person or MC club willing to do this.
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July 4th: Jenna and some friends in the Upper Darby area of Philadelphia are planning a charity Beef and Beer event(we might call it a Bull Roast around here). It will most likely take place some time this fall. Updates on this when we get them.
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July 15th: Efforts continue to find a safe place for contributions. Right now some folks from the racquetball group are working on aligning Jimm's cause with a foundation in Carroll County. More on this soon.
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July 17th: Please see new note below in the 'comments' section from Kathy and Joe regarding the benefit tournament for Jimm.
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Aug 3rd: Deborah's pals at Walmart came through again and raffled off one of the first copies of the latest Harry Potter book. The proceeds will go toward gas and EZ Passes for our gal.
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Aug 4th: Those in our racquetball group who are coordinating the non-profit effort are waiting for word from the lawyer at the Community Foundation of Carroll County to see if they will assist with Jimm and Deborah's finances. More on this important topic soon I hope.
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Aug 5th: A good friend of Jimm's, Tony Guiffre, is working at MPT on Sunday for Jimm(meaning Tony's paycheck will go to Jimm). This gesture will be deeply appreciated by Deborah, Jimm and the entire family. Tony, thank you for your generosity.
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August 5th:

This is big enough news to move up from Comments below... if interested in more info on the Revelle Team Basket.. and participating in the Basket Lotto please call Dinah at 410-409-4117.

Just an idea.. would someone at MPT want to get a bunch of tickets from Dinah for friends there? (I'll buy a couple:)

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Dinah Seisman said...

...Deborah's Longaberger friends will be hosting 2 fundraisers:

1) AUGUST: We've designed "The Revelle Team Basket" with Ravens color trim strips, Rball tacks and a commemorative brass splint. Other colors and sport tacks are also available for those who might want this for a graduate gift or to support their local sports team.

2) BASKET LOTTERY. Tickets will be $10 and include 40 chances (Nov & Dec) to win a Longaberger basket. Winning numbers will be determined by the MD State Lotto.

We can circulate the word through our Longaberger family. Can you post ticket info on the Blog?

Proceeds from all Revelle Team Baskets and 100% of the profits from the Lottery will be donated to Jimm and Deborah.

For more info, please call Dinah at 410-409-4117

August 4, 2007 11:17 AM

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August 7th:
We are close to an agreement with the Community Foundation Of Carroll County that will give us the non-profit status we have been seeking. This will mean that all contributions made through the Jimm Revelle Fund, as it will be called, will be tax deductible for the donor and better tax-wise for the recipients as well.
All checks will be addressed(or later routed) to the Fund in care of the Foundation(charges and cash contibutions will also be possible).. and in turn the Foundation will pay medical, and home expenses such as mortgage, utilities and others to be determined.

As friends of Deborah and Jimm, we have all been frustrated by not being able to do anything. If this works out as well as we hope, it will be a major step toward being able to help in a rather dramatic way. This, in turn, can only have a positive influence on Jimm's future recuperation.. which will undoubtedly take quite a while.

Soon we will open a new blogsite to concentrate on funding and contributions only. Watch for that in the near future.
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August 8th:
Jeff Wachter, MPT master control supervisor.. who also does mortgage financing, has offered to contribute $150.00 from his next mortgage transaction. So if you want to buy a house, go to Jeff for financing, and in turn you will be contributing to Jimm's fund.
Thanks Jeff.
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Aug 16th:
It's disappointing that the Jimm Revelle Fund has not been officially launched yet.. there have been more nuts and bolts to iron out than was first expected. Those who are involved estimate that next week it may happen. At that time I am planning on shooting in a $150.00 check.
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Aug 18th:
MPT's Ann Klimas has kindly contributed $200.00.. excellent, that will help so much. Thanks Ann.

aw

Update July 30th

Better yesterday. He is more chipper and sat in a chair for a while. He has a speaking valve now but can talk only for about 15 minutes before running out of air. The fistula is really just a hole that is pretty near the main incision, so care is being taken to prevent goo from getting where it shouldn't.
Dialysis was done Saturday and will be done again today.. gut feeding restarted, looking for a spot that will absorb nutrients. He is getting pretty skinny so we hope they find that spot soon.
The infection is still being researched but at least it is not septicemia, which was suspected at one point. That's bad stuff.

aw

Update July 27th

Not a great report today. They have not been able to close Jimm. He continues to suffer from an unknown infection which has weakened him and caused his kidneys to revert to minimal output. Thus, dialysis will be needed more often. Food being delivered into his stomach has been discontinued because he was not absorbing it.. the IV feeding remains. They attempted to change the tracheostomy and insert a speaking valve but this failed to work due to problems with clogging. So Jimm can still not talk or write(hands too weak and shaky).

Jimm's fistula.. now essentially a colostomy and not able to be bagged after all, is causing some messy problems, and it has been mentioned that there is another fistula that has occurred.. though they have not said where it is.

Issues still exist with the staff on the seventh floor. The patient advocate that may be able to help is due back from vacation Monday. The family does not need additional problems like this.

Update July 25th

Yesterday a bag was successfully stitched to Jimm's fistula.. and, with that completed, they are planning to close the main site and do grafting soon. Dialysis and the changing out of lines, drains, and tubes was done earlier this week.. and today Jimm's bandages were changed at bedside.

Jimm and the family are trying to get used to the new floor, which features nurses who are busier(3 to 1 mostly), and a staff that doesn't seem quite as happy and easy going as what they have been used to(Deborah is talking to people about that). Aside from a difficult time a couple nights ago, Jimm is resting pretty well with the help of pain meds and sleeping pills when needed.

aw

Update July 24th

Disappointingly, Jimm's closing has been put on hold due to complications.. further issues with his colon, and he has picked up yet another infection. They are trying to find the source, then it will be treated. Even with all this stuff happening they have elected to move him again.. this time to a surgical step-down unit on the 7th floor. Dr. Sisley is not as forthcoming or easy to get a hold of as some others, so additional info is not available yet.

New location is Gudelski 7 Rm 760.

aw

Update July 22nd

Monday they are planning on closing and beginning abdominal skin grafting. We have been waiting for this a long time.

Also- an important note..
Jimm is in a different room they hope will be quieter so he can rest better.. room 20 on the same floor.
So new mailing address is:

Note: Jimm is no longer in the room noted below.. see current room number in *Address* post in archives to right.
James Revelle
Gudelsky 4 Rm 20
University of Maryland Medical Center
22 S. Greene Street
Baltimore, MD 21201

Update July 20th and Notes

Yesterday the initial steps were taken to close Jimm's surgical opening. It was pulled together to within a couple inches and secured with sutures, with mesh underneath. The next step will be taken early next week. Dr. Johnson, head of the surgical team says the skin on either side looks good, and bringing it closer gradually will minimize the amount needed for grafts later.
During the procedure, which lasted several hours, Jimm had his drains replaced.. and afterwards was given one unit of blood to stabilize his blood pressure.
The fistula in his colon will require a temporary colostomy.. which will most likely be reversed in the spring, at the same time as the repair of the incisional hernia that will have been created.

Jimm continues to receive physical therapy and is constantly prompted by Mandi and others to practice his writing and do his leg lifts!

Note: This blog shows up well on some Verizon Mobile phones. Not all the links come up, but the text is there. So now you can check in with us when on the go during the summer. Try going to http://jimmupdates.blogspot.com on your internet-capable phone and see what happens.

Additional note: Please see the 'Contributions' post for a new message from Kathy and Joe about the benefit racquetball tournament.

aw

Update July 18th

Because Jimm is no longer critical, nurses are now tending to other patients as well as him.. which means they may not be in the room, or even on the floor when we want to talk to them(which was the case today). This, combined with the fact that the surgical team does not always update Deborah in a timely manner, sometimes leaves us without up to the minute details we crave. We do know that he had a tough night the night before last, but is steady now and his condition is much the same as reported earlier.

aw

Update July 16th

Yesterday a drain was put in through the ribs and approximately 3 litres of fluid removed from the area around Jimm's lungs(pleural cavity). The drain will remain in place for perhaps a week.
A washout was done this morning. His numbers are good and he is resting well.

aw

Update July 15th

Things are steady and Jimm remains groggy, but is awake from time to time. He is not yet able to communicate except to answer yes or no. He may be able to write sometime soon, but his right index finger is home to a pulse oximeter which may get in the way. I'm sure the hospital staff will have some ideas when he gets to that point.

IV's continue.. currently supplying insulin, pain medication(Fentanyl), and feeding(TPN). No constant dialysis or tissue fluid removal is needed, so the 24 hour machine(that returned for a while after last weekend's onset of infection)is gone again. Breathing assist is minimal and features 40% oxygen.. common for trach patients. The fistula mentioned earlier has been stitched over and happily not resulted in the need for an ostomy. The current need is to relieve the pressure of built up fluid against the lungs with a drain, which is to be put in sometime today. Technically, this is a pleural effusion treated by thoracentesis.

Because Jimm is more aware than ever of what's going on, and is not particularly happy about it, a new set of needs has arisen to keep him calm and to try to keep his spirits up. The answer for this is complex and depends on a delicate balance of visits by family members and medication. Jimm is still not ready for open visitation.. in fact, that may have to wait until he is moved off this surgical ICU floor. I promise.. you guys will be the first to know when this happens.

aw