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

Update July 11th

The washout was performed yesterday and the remaining fluid sack was drained. IV feeding is being done to rest his gut and avoid worsening a recently discovered colonic fistula that doctors don't seem to be too worried about. Blood pressure raising meds are down, dialysis is back on a more "as needed" schedule and his ventilator assistance is extremely light.

Jimm seems to have rebounded well from his recent setback, and is quickly becoming more aware again. The physical therapy people were called to his room today to give him a little workout, and try to improve his writing skills so he can communicate better via notes(like "I want mashed potatoes and gravy with my steak!"... right big fella).

Next washout is scheduled for Friday.

aw

Update July 10th

As mentioned late yesterday, two fluid filled sacks were found in Jimm's upper abdominal area.. not too far from the pancreas. The docs were able to get a tube into the larger one and drain it. The other will be tended to today during the planned washout procedure. The fluid itself was analyzed and found to be infected, leading them to believe that these sacks may have caused Jimm's Friday night attack in which he became quite ill. This unfortunately has resulted in the return of the 24 hour dialysis machine and the ventilator, the discontinuation of stomach tube feeding, caused an indeterminate delay in closing him up, and thrown his recovery back about a week.
However, Dr. Lissauer says we should be encouraged by Jimm's overall progress, and that he would be very surprised if these backslides did not occur.

aw

Update July 9th

Our friend was much better today. In fact he was awake and quite responsive.. although doing best at yes or no answers of course. The operation was not done today, but will instead be done tomorrow. The MRI sightings turned out to be fluid sacks.. one of which was drained.. the other will be drained during the surgery. They are full of some pretty yucky stuff, and it is suspected that they were the primary cause of the infection that occurred a couple days ago that has set Jimm back in his recovery.
More tomorrow AM.

Update and Note July 8th

Latest news is that Jimm is resting today and stable. An MRI has found something in the upper chest that they want to look at during the washout which is planned for tomorrow morning. Since we don't have any clear indication of what it is, I considered not mentioning it. But this is the kind of stuff that the family insiders have gone through all too often with Jimm's illness. I figured we could join them in wringing our hands until tomorrow, and let's hope it's nothing but fluid or something else easy to deal with.
More as soon as it's available.

aw

Blog note: I have moved some of the more important posts up into this month for easier access via the archive list. Also, a link has been installed so you can flip easily to the picture blog, and back again. Some neat new pics over there.. to lighten things up a bit, go look.
-a

Follow Up July 7th

We learned later today that unfortunately Jimm had a bad night last night, and has encountered a temporary setback. Blood pressure has dropped, the darn respirator is back for a while, yet another new infection found and different antibiotic now at work. Sorry we had to put a bit of a damper on the previous good news with this.. but let's hope for a better report tomorrow. Hang in there.. Jimm is.

aw

Update July 7th

Some encouraging news for today..
Jimm is more awake now and trying to mouth words. Communication is tough because he can't speak or write yet. Soon he will be taught by a therapist how to talk with his trach in. Being stationary for so long, his right arm and hand are not moving well enough for him to jot down notes.. but upcoming physical therapy will be more aggressive on arms and legs, and they are hoping he will be able to move back and forth to a chair in the foreseeable future. Hot damn.

A while ago we thought maybe he would be able to come off the vent for good, but they still had to put him back on for a while each day. It seems that now he really is done with the breathing assistance for good. Also gone is the insulin drip, and the stomach feeding rate has been stepped up. Jimm's damaged left arm is now healing up and looks better, his foot swelling is greatly reduced.. and his main abdominal bandage was changed yesterday at bedside.

To top it all off he had a nice bath and shave. Shaving is a somewhat delicate process considering the blood thinners our patient is still being given.. but it was done this time by one of the nurses who evidently has a special knack for such procedures. Good for her.. and very good for Jimm.

aw

Update July 4th

Jimm's upper body is looking good with the fluid dramatically reduced. He continues to be off the vent and breathing by himself 4 to 6 hours a day. A washout was done yesterday.. the docs still need to do this, and have given no word on closing. They are a very patient lot. We and the family are not nearly so patient.. are we?

aw

Update/Notes July 2nd

Things are about the same. Jimm was off the vent today from 10:00 AM to late afternoon- and maybe beyond. BP strong. Arm was wrapped in plastic.. now has a regular dressing. No word on when grafting will be done. No dialysis since Friday.. blood tested often for elevated toxin levels.. kidneys putting out a good amount now, but not as efficient in their ability to clean the blood as they will be. No word on further surgeries- but at least one more will be needed sometime soon.
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Important funding note: Please keep an eye on the *Contributions/Fundraising* section. It is a living document that will be changing constantly as things develop.
Blog hint: Since we are in a new month now, hit the arrow next to June to open that month up in the archive list.
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One more very special note: A salute to Deborah, who is staying strong and keeping her sense of humor at the ready- and to daughters Laura, Jenna and Mandi, who contribute an amazing amount.. each in her own way.. to support Jimm, Deborah- and each other. All you guys, and the rest of the family, are in our thoughts during this difficult time.

aw