Latest News and Updates on Dad's Condition

Latest News and Updates on Dad's Condition
(jump to the bottom to start at the beginning)

June 2, 2005 - 9:15pm :

Well its officially two full months today. Dad was admitted to St Barnabas late on the eve of 04/01/2005, and got to his ICU room by 04/02/2005. Today is 06/02/2005, and he has been through the ringer and back - what a ride.

In that time he has had all the problems that you are all already aware of, and had mostly recovered - to the point where we went down to Spring Lake on Saturday to his 5 mile run so that he could pick up his t-shirt and pint glass. He is now driving himself. He is going to work - not to perform physical work ... yet, but to go to the job and talk to customers. So I'd say he is fully back in the swing of things now.

He is really just down to managing the fatigue now, and improving his stamina, slowly. So for anyone coming to visit - please continue to come around back to the deck door and knock there - its easier for dad to get up and answer that door than it is to get to the front door if he's reseting. Outpatient therapy continues, but now its just like any other time of the year - he may or not be there if you stop by now because he's getting so active.

So thanks a final time to all of you for all of your support, kind wishes, cards and emails. Since its the two month anniversary, it seems like a good time to bring this site to a close. Im going to discontinue the updates on this site going forward. For any further updates, please contact dad directly.

June 1, 2005 - 8:30pm :

Dad is doing really good. He actually drove himself to therapy today. He took the turbo Riv, my aunt, and ... full control. Seems like all went well - therapy was good, and the respiratory doctor's appointment after went well also. He's doing very well indeed.

For anyone coming to visit - please come around back to the deck door and knock there - its easier for dad to get up and answer that door than it is to get to the front door. He is usually up and active by about 7 or 8am, so anytime between then and 6pm is a good time. Outpatient therapy is currently 3pm to 5pm, but we are trying to get that moved to the morning hours.

May 30, 2005 - 8:40pm :

Dad participated in the holiday parade today in the firemen's crew, but as a "rider" not a walker. Small gathering at Kar-Kar's for the holiday as well. Other than that, not much to report.

Otherwise, a couple of visitors today, and just a bunch of regular activity. One of dads friends brought his Prowler by - might I say that is one damn cool car.

The shakes are still present, but in my honest opinion, they are starting to lessen .... ever so slightly. Of course, due to the holiday, no therapy today. That resumes on Wednesday.

Also - for anyone coming to visit - please come around back to the deck door and knock there - its easier for dad to get up and answer that door than it is to get to the front door. He is usually up and active by about 7 or 8am, so anytime between then and 6pm is a good time. Outpatient therapy is currently 3pm to 5pm, but we are trying to get that moved to the morning hours.

May 29, 2005 - 11:59pm :

So today dad took his "driving test" with mom, and all went well. Mom said he passed.

Other than that, not much to report - a few visitors today, and otherwise just relaxing.

May 28, 2005 - 11:59pm :

Sorry about yesterday's entry - I didnt get up there at night, so didnt have an entry to post.

Well, today was the Spring Lake 5 mile run. We drove down bright and early (6am), and dad picked up his glass, t-shirt, and other literature. It was a great day for a run - perfect weather down there - but of course, he's not quite there yet. But he did end up walking about 2 miles we guess based on the distance from the check-in tables to the car, and the round trip walking effort to and from that check in table.

Other than that, not much to report - a few visitors today, and otherwise just relaxing after all that walking.

May 26, 2005 - 11:59pm :

Dad continued his at home excersize as today was a day off therapy. He continues his walking - today walking up to Drug Fair, which is totally uphill. That was pretty tiring by his account, but good excersize none the less. He still fatigues quickly, but that is not a surprise. The morning shakes continue, but seem to be getting better - ever so slightly.

He had a pretty nice visit last night from his friends at the Verona Fire Department. They all came by (trucks and all) and hung out for about a half hour or so - that was nice. And of course the grandkids loved it too.

May 25, 2005 - 11:29pm :

Dad is doing well. He's excersizing, getting therapy (another session today), and resting as needed. There are also lots of nice distractions from all that, like visitors, dinner with the grandkids, etc.

He still fatigues quickly, but that is not a surprise. He wakes up with a bit of the shakes - he can still do the stairs on his own, and eat his breakfast and stuff though so its not like its anything major. During daily excersizes, we have to be careful he doesnt push too far, but he seems to be respecting those limits properly. And by about 8pm each night - he's done.

As for excersize, he's still getting therapy on an outpatient basis every Monday, Wednesday and Friday. He also still walks up the street one house worth of distance, and down the street about four houses worth. He still does the stairs completely on his own each day - down in the morning and up at night. So things are continuing to progress. His apetite is starting to return, so maybe we can get him to start putting on a few pounds - we will see.

May 24, 2005 - 9:24pm :

Dad is getting along pretty good now. Happy to be at home, and really going through the paces. He walks up the street one house worth of distance, and down the street about 4 houses worth. So its a pretty good distance. He is also doing the stairs completely on his own each day - down in the morning and up at night. Sleeping in his own bed is a great thing.

He also finally continues to get a full nights rest - we figure its actually the one Tyleonol before bed, in addition to the lack of cat-naps in the day. Either way, its working now. That helps with the fatigue, but he is still 100% done by about 8pm each night.

May 23, 2005 - 9:56pm :

We got our railings put up at Mom and Dad's today - one going downstairs and one on the deck. Today was also dad's first day of outpatient based therapy. We were not sure how things were going to be scheduled after getting kicked out of Kessler so abruptly and rudely on Friday. As it turns out, we were able to get in today at 3pm for the first one hour session of occupational therapy, followed by one hour of physical therapy. Dad said it was good, and was also very specialized/focused as its purely one-on-one based.

Dad also finally got a full nights rest - first time in almost two months - who would have thought such little things could make us happy ... So he got lots of sleep and he seemed more alert today. There were quite a few visitors today, so the alertness came in handy.

On another note, we got the ipod hooked up to the stereo in the back room today, so it not only helps him sleep at night now, but it helps pass the time in the day too - and it sounds great on the stereo.

Also - for anyone coming to visit - please come around back to the deck door and knock there - its easier for dad to get up and answer that door than it is to get to the front door.

May 22, 2005 - 9:35pm :

Not as many visitors today, which was good, because it gave Dad a good chance to catch up on some rest. Thats a good thing too because work was killing me today and I couldnt be around much anyway.

Tomorrow we find out all about the home care part. We call in the morning to find out about the outpatient therapy schedule, when he will need rides, when the equipment will arive at the house, etc. So tomorrow will be alot of calls and planning for the weeks ahead.

Also - for anyone coming to visit - please come around back to the deck door and knock there - its easier for dad to get up and answer that door than it is to get to the front door.

May 21, 2005 - 9:20pm :

I forgot to mention that he got his feeding tube out yesterday before he left - so that finally did happen.

Wow did we have a ton of visitors today. I was up at the house bright and early, and the visitors started that early. They were stopping in all day and up to almost 8pm - Dad was happy to see alot of the faces - so it was nice to see.

Im guessing I will keep this site going for a little while longer. Hopefully it may cut down on a few calls - but you never know. Either way, the site will continue to updated for a few more days or weeks I guess.

May 20, 2005 - 10:02pm :

Ok - so today was an eventful day - a bit shocking but eventful. On my way to Kessler tonite I found out that dad was being discharged. So we spent the last few hours arguing with Kessler about how they could release him without any warning or setup, and then happily took him out. We dont know when the outpatient therapy will begin yet, but we will call on Monday to find out. So effective immediately, he's now home again.

Boy was he happy to be sleeping in his own bed tonite. I can only imagine how good that must feel after 7+ weeks out of home. So this will likely be the last entry on this site. From here on forward, he's home and will going back for outpatient based therapy - and just getting back to normal life.

Thanks all of you for your support along the way !

May 19, 2005 - 8:29pm :

Dad continues to be pretty fatigued. He is still shaking from the workout and lack of sleep. But the good news is that he was moved to another room today. When I got there, I learned he was relocated to a room with no respiratory needs, so hopefully he will get more sleep tonite. Its a whole different crew of nurses and aides, so we will miss the old ones. We hope he gets some sleep tonite, so our fingers are crossed.

New Standard Note : Visiting for dad at Kessler will be limited to Sunday only. He did get scheduled for a majority of the day on Saturday in highly specialized one-on-one training. We figure he will be out cold by the time he gets back to his room Saturday afternoon. So its Sunday only for this weekend. Thanks in advance for respecting that.

May 18, 2005 - 8:56pm :

Strangely, dad was showing signs of extreme fatigue over the last two to three days. He has been going to sleep tired but unable to get rest, body shaking and partially nausiated. He was waking up in the same state - and this is creating problems, such that he is going to therapy in the same condition the next day. In conversations with the doctors, the nurses, and the therapists - we all agree that its definately related to dad being over active, for too long, each day - without getting enough down time.

So what we have started doing immediately is to leave him alone each night by 7pm to help him get to sleep earlier. In addition, he will remain in bed when not in therapy or the cafeteria getting food and nourishment. He also needs to limit his movement and talking. So we are limiting his time in the wheel chair - even we are leaving early at nights now. So we are really requesting everyone to keep visitation to Sundays only.

The only sleep he is getting is in the hours leading up to midnight - so we need to maximize those hours after therapy and dinner, by leaving him alone as much as possible. He seems to go to sleep as soon as we leave the room - so if he's only staying awake to entertain us (while we are supposed to be providing him comfort) - then there is something wrong. So that is why we are now leaving early and requesting that everyone really only come down on Sundays.

May 17, 2005 - 9:26pm :

Therapy continues, and continues to remain tough - in fact, over the last two or three days, he has been wiped out earlier each night. It seems fatigue is really setting in. He knows that fatigue will be the main challenge after he gets out of Kessler.

He was also told today that he may be getting the feeding tube out tomorrow. Thats good because it means they are confident that his eating habits are solid enough that he doesnt have any risk with not getting enough nutrition now. And as his last tube left, we will have to throw a mini-party when that one gets out.

May 16, 2005 - 9:40pm :

As expected, therapy continues, and remains tough. They say he is improving at such an accelerated rate, that it doesnt fit the training programs and they have to keep trying to find new things for him to do. He is completing excersizes the first time, where most people need two or three days to get them completed as well. This is causing some pleasant frustration for the therapists.

Dad's pretty mobile now. I would say he can run or anything like that yet, but he was scampering around pretty quickly with the walker yesterday when all the visitors were around - there was even a period where the nurse at the main desk told him to slow down. But today, the walker is now gone - he's just using a cane now. They hope to have him off that by the end of the week. So all things are going well.

May 15, 2005 - 9:24pm :

No therapy today but lots of visitors. Dad was out of the room for most of the day today - about 8 or 9 hours. Lots of time spent with guests in the Atrium, and some outside too. A nice day, but all that time out of the bed tired him out early. Being out of bed keeps him active - even just trying to sit in regular chairs, on couches, outside chairs, etc - all keeps him moving. He also tools around with his walker, moving really quickly - so that also tires him out. Sitting in bed is the only time he's really relaxed - so he was out pretty early tonite. Tomorrow is back on normal therapy and he also starts eating in the cafeteria now - no more room delivered meals. Boy, they are just making him work for everything now ... :)

May 14, 2005 - 9:35pm :

Therapy continued today with the one-on-one session. It was gruelling and tough as expected. He was very tired today, but still went out of the room to sit with the grandkids today for a few hours. But he was definately tired out from all the excersizes.

New Standard Note : Visiting for dad at Kessler will be limited to Sunday only this week. He did get scheduled for a majority of the day on Saturday in highly specialized one-on-one training. We figure he will be out cold by the time he gets back to his room Saturday afternoon. So its Sunday only for this weekend. Thanks in advance for respecting that.

May 13, 2005 - 9:00pm :

Not much to report on today. Therapy continued - its tough thats for sure, but it wasnt as bad as they had built it up to be. It was tough, like yesterday and the day before it - but not a tremendous amount more. Perhaps this is a new strategy. We think they are trying to find dads breaking point now. The feeding tube is still in as well, but that is really about it. Tomorrow is the one-on-one therapy session - so we figure he will be dead-tired at the end of that.

May 12, 2005 - 9:36pm :

Ok, so Im a tool (but some already knew that). The doctor was not saying she was going to have dad moved, she was saying she was having his catheter re-moved. So he's still in the same room, and not getting much sleep - but the catheter is out now. Oh well, I guess thats why he was getting frustrated when I was trying to read his lips ..... whatever.

He was exhausted when I got there today. He did to stairs in therapy today - and it was everything they said it would be - lots of concentration, control, and effort - but he did good. Plus they hit him up with a bunch of balance type excersizes - so he was pretty wiped out. But he is continuing to get better every day.

So at this point, the only tube he has left to get rid of is the feeding tube. He hasnt used it since Monday night, but they just have not removed it yet. Otherwise all is well.

May 11, 2005 - 9:20pm :

Dad finally got the tracheostomy tube out today - that is very big, because he is now able to move out of the very distracting "quad" he's currently in, and may finally be able to get some sleep/rest in a regular room. He is expected to move tomorrow morning - he cant wait.

Therapy today wasnt too bad as far as new excersizes, but was tough as far as fatigue and stamina. Without the sleep and rest at night, he's just more and more tired coming into therapy. Plus, he also has an additional hour now - two full hours of occupational therapy (dressing, eating, walking, putting on your own shirt/shoes/etc), and two full hours of physical therapy (movement, strength, etc). He's getting a workout - thats for sure. Tomorrow, he gets to do stairs - thats a big day, and they have been warning him to get some rest for this one. From people who are always trying to break him - for them to warn him, tomorrow must be really tough ... only time will tell.

New Standard Note : Visiting at Kessler will be limited to weekends. He has therapy Monday to Friday for most of the day - and on Saturday its really just an hour or so. There is no-one allowed in when he's in therapy. The rest of the days are spent eating, sleeping, showering, and recovering. So the only real time that visitation can happen is on Saturday and Sunday. So anyone interested in coming - PLEASE only come down on weekends. The hours he should be available for visitation on weekends would be about 10:00am through 8:00pm. So even though Kessler lists weekday hours as available, its not really true for dad because of his specialized schedule. Thanks in advance for respecting that.

May 10, 2005 - 9:15pm :

Therapy continued today - dad continued walking with a walker today. Still doing squats and stomach excersizes. They are going to finally get the traecheostomy tube out so that they can do some serious one-on-one training on Saturday. They are also finally trying to get the feeding tube out because they say he is eating well on his own. He got his hair cut today - thats a load off for him. So its all up from here.

May 9, 2005 - 9:30pm :

Sorry if any of you tried to get to the website today and saw it down - when it gets over 70 degrees outside and I forget to turn my A/C on at home, it overheats the server room, and my computers trip the breaker - so everythign shuts down. Its all good now.

Therapy continued today - dad was walking with a walker today. He was doing some leg squats, and improving strength and stamina in his legs. He also began working out his stomach for the first time. He was truly wiped out when I got there today - but he said the shower felt great after all that. The therapy continues, and he pushes harder and harder each day. He is making great progress and the therapists are astounded each and every day with how far he has come. And its really only the third full day of therapy, since Wednesday last week was a short day (complications), and Saturday is not a full day either (as we now know). So to get this far in three days, is truly impressive.

May 8, 2005 - 9:15pm :

Believe it or not, it was a great mothers day today. Dad doesnt have a phone in his room at Kessler. He asked me to bring him his cell phone last week - I couldnt figure out why, but I dont really have to understand, I just did it anyway. So I brought the cellphone in, and we have just left it on charge for 4 days now. This morning, dad picked up his cell phone, and called mom to wish her a happy mothers day - I think we were all a little surprised, but it was nice.

So after all that, we were planning to get together this morning for mothers day. The Aloia clan (Deana, Mike, Stephanie and Ryan) and the Conklin clan (Kara, Craiger, and Cassandra) came down. Mom was of course already there. We all hung out in the big open area with all the nice views and dad got to see all the grandkids for the first time in over five weeks. So that was pretty good to see. I think both sides were going through withdrawl, and were a little elated - the grandkids, and the grandpa ...

Deana/Kara/Mom also each provided a part of the dinner meal, so dad ended up with Chicken Francese, Broccoli, pasta, spinach salad, fruit salad, and cookies. He ate quite a bit - said it was much better than hospital food, but nobody is surprised there.

Lots of visitors throughout the weekend too. That was good because it enabled us to get him out of bed and around. I'd say he spent half the weekend out of the bed, and either in the wheelchair or in a regular chair - so that was also really cool. He's now able to get himself out of the chair and into the chair - even walked a few steps from the wheelchair to the regular chair today on his own. Thats real progress.

New Standard Note : Visiting at Kessler will be limited to Sunday's. He has therapy Monday to Friday for most of the day - and on Saturday we dont yet know the schedule, but its assumed to be longer than Monday to Friday's sessions. There is no-one allowed in when he's in therapy. The rest of the day is spent eating, sleeping, showering, and recovering. So the only real time that visitation can happen is on Sunday. So anyone interested in coming - PLEASE only come down on Sundays. The hours he should be available for visitation on Sunday would be about 10:00am through 8:00pm. So even though Kessler lists daytime hours as available, its not really true for dad because of his specialized schedule. Thanks in advance for respecting that.

May 7, 2005 - 10:40pm :

Not much to update today - blood pressure, heart rate, and oxygen percentage all still good. Minimal therapy today - Saturday is lighter than expected. But for the first time, dad got some good rest last night. He's eating better now, even though the meals are the same. He is getting out and about now - out of the room ... granted, its still in the wheelchair, but he pushes himself, and its activity - so we like that.

May 6, 2005 - 9:04pm :

Another day of therapy - he is getting better every day. He's also drinking comfortably from a cup now without a straw, able to hold it on his own (the cup that is), and looking more and more alert and normal with each passing day. He walked over 80 steps today at the parallel bars, and the physical therapists were so impressed. He just keeps telling them that he will do his part if they do theirs - he doesnt want to be in there any longer than absolutely neccessary. The main physical therapist stopped in today to check on him on the way out and did reinforce that he just has to be careful not to tire himself out too much - thats an issue specific to Guillian Barre that he has to be careful of. But he is really doing great.

The biggest problem he is having now is getting rest. Hopefully he will get out of that room he's in at this point - and off to his own (or a double), but one without loud roomates. We actually left him a little early tonite because he was finally sleeping - it doesnt happen often, and doesnt last long, but we let him have what he could get.

May 5, 2005 - 9:18pm :

Another day of therapy, and boy are they working him over - but he is a good match for them. Sometimes he does so well on some tests that they think he's cheating with some manner of leverage or something. Turns out, he's just stronger than they expected him to be at this point, so thats good. So the therapists love his willingness to keep going, and they are very un-used to that. Anyone that knows him, knows his attitude - just tell him what needs to be done, and he will do it - dont worry how he looks doing it - dont go easy on him. So its all helping him recover. But that doesnt mean they still dont try and break him.

He doesnt sleep a lot at night, because his three roomates are all sort of tough patients to be around at times - so he does little excersizes so that its not a total waste of time ..... is anyone really surprised at that? So rest isnt so good - but he wasnt bleeding anymore today and his blood count was good - so thats good to hear. His next evaluation is Wednesday next week, so we just keep repeating this pattern until then.

Jeez, I almost forgot - he also began eating today ... by himself. He is able to hold a fork and eat things like cut fruit. Difficult foods are still trouble (rice, etc), but its a heck-uv-a start. That was great to see. Its difficult, and slow, but its progress :)

May 4, 2005 - 9:20pm :

Today was his first day of real therapy and they sure did work him over. He missed the first few hours of therapy today though because the bleeding returned a bit. Didnt seem to be anything to be too concerned about (at this time), but just to be sure, he didnt go to therapy while the doctors discussed it. He did go for therapy in the afternoon though - and was worked hard for almost the whole afternoon. Its good, but tough as expected. He's exhausted. He did good though - lots of reps of lots of excersize. Then he got to take a shower - that was great - I have not seen him smile that big in a while.

So that pattern will continue until at least Wednesday of next week, which is 8 days after arrival, and time for re-evaluation again. At that point they decide if another week of in-patient is in order or if it should be out-patient from there. Time will tell, but they say he is stronger than they expected for this point in the game.

May 3, 2005 - 9:15pm :

Ok - he left the hospital today at about 10:30am, right on schedule. He is now in Kessler Rehab (West Orange). Tomorrow is first day of real therapy. Today was just a series of tests. There were two teams of interviewers today, plus xrays, doppler tests, and other information gathering episodes. He also did have his tracheostomy tube reduced to the smaller non baloon type today - and for the first time is speaking through his voice box with his real voice - no more kazoo simulator speaking device. That was cool. He's also totally off the ventilator now, so no more external breathing tubes. That ultimately means that he will be transferred out of the "quad" he's in now, which is for special breathing care - and he's off to a regular single or double room.

Visiting at Kessler is really quite limited. The actual hours are pretty big in duration, but based on other scheduled events, and based on his therapy schedule, it appears that only about 4:30pm to 8:30pm is available for true visitation - they dont want us hanging around watching therapy sessions. Mom was there today for admission, and I will be there tomorrow morning to make sure he has everything he needs to get started, but after that its really the late afternoon and early evening only ... and that is if he's not sleeping from the exhaustion.

Anyway, thats all good news, so we are anxious and optomistic.

May 2, 2005 - 10:46pm :

All things considered, I guess this is the best day yet - today we learned he will be transferred to Kessler tomorrow. So physical therapy will begin tomorrow after checkin, which is scheduled for sometime after his 10:30am departure from the hospital - so thats when he can start kicking some butt. Of course we will miss the wonderful staff at St Barnabas, but he is on to better and brighter days now.

So visiting is officially closed at this point. The visiting hours end at 10pm each night, and dont start until 11am the next day. So as of this writing, no more seeing him in the hospital - mom will be the last to see him there, as we will all now find him at Kessler. So everyone can join us in wishing the fastest (and safest) possible rehabilitation session possible.

Visiting information for Kessler will be provided once it becomes available to us ... sometime tomorrow.

May 1, 2005 - 11:50pm :

One month in now - we started this journey on April 1st (no joke), and its now one month into the process. Dad's making a great recovery at this point - all the life threatening part seems to be behind us now. He's setup for an evaluation tomorrow (Monday) with Kessler and could be released from St Barnabas as soon as tomorrow. We figure its likely that he will be released on Tuesday or Wednesday, but it could happen tomorrow. Either way, physical therapy will begin then, and thats when he can start kicking some butt.

He's eating a little better today. They stop the feeding tube about an hour before meals to help generate some hunger, to make him want to eat more real food. It helped a little today - as lunch was almost completely consumed, but dinner was about 30% or so.

He continues to breathe more and more on his own. He really could be done with the ventilator at this point, but we are going with the doctor's collective thought of being conservative. So he will go back on the ventilator tonite at midnight and use it until about 6am. Last night it was 10pm that he went back on it. So last night he was doing 8 hours ventilator, and the rest on his own. Tonite its 6 hours ventilator and the rest on his own. Tomorrow would be 4 hours on ventilator - but its all subject to change pending the assessment. Thats pretty much it for now - we anxiously await tomorrows results.

April 30, 2005 - 11:46pm :

Another great day. Dad has made some incredible strides in the last three days. Dad is fully alert now - aware how long he's been in the hospital, recognizing more nurses, and telling his same old jokes. He's on solid food now, so that is extremely encouraging. He gets to use the voice module on the tracheostomy tube, so we can understand him so much better than the last four or five days - and that makes it almost a pleasure. He did the entire day today on his own breathing, and with the voice thing - its almost like normal. He still goes back on the ventilator at 10pm each night for overnight sleeping, but that could change tomorrow or Monday if they think he no longer needs the ventilator at all. He's also scheduled to meet with the therapists for assesment on further acute care - probably at Kessler in West Orange.

Physical movement is also improving - he was able to scrath his nose, and wipe his eyes today. He can shake his legs vigorously and can begin to move his legs up off the bed slightly - so they are all very good signs. Grip is returning to his hands, and he spent some time out of the bed today in a custom chair, so that is also good. He's been working his fine motor skills with a stress ball and tonight pushed the nurse button by himself. He's anxious to hold a cup on his own now (small steps to normal people but huge improvements for him!).

So all in all, things are starting to really good. Basically we are just about to a point of pure physical therapy - which is what he will do best at. He's always been very fit and in shape, so this should really be the "easy" part. He knows he's going to Kessler but he's not completely admitting to himself that the first portion of that phase will be in-patient. We'll find out more about the long term plan on Monday when he has the neurological and physical assessments.

The nurses and respiratory therapists are all popping in to "meet" him after almost a month of care. It's so nice to see how happy they are to finally see him awake and alert.

Standard Note : we are still keeping the visitation to a minimum - please. We will definately keep you all posted for when we get the regular room - it should be very soon. Once he's in a regular room, we will let everyone know that its ok to visit - even if only for a short while. And not to sound repetitive, but as always, thanks again for all your wishes and prayers - they mean alot to us.

April 29, 2005 - 10:36pm :

A great night really. We from incredibly constant (but not angry) dimensia to almost complete and total alertness at about 9pm tonite - almost like some magic. He was immediately aware that he had been in the hospital for four weeks, recognized some of the nurses from the few days, and overall just wanted to get out of the bed and walk. He recognized the doctors and other personnel, and was eating solid food today. He also had his voice module on, so we could understand him SOOO much better than the last four or five days.

He did 2 more sessions today where he was breathing on his own - the pattern is now 3 hours on the ventilator and 6 hours off. Then tomorrow we repeat and try to get him totally off by Sunday. If we can do that, we cap the ventilator tube, and eventually have it replace with a smaller one, and then ultimately removed.

So things are starting to really look up. While he remains with the tracheostomy, he could be off the ventilator as soon as next week, and off for physical therapy. We remain highly optomistic, and he is very charged up to get better now. We just hope this new trend will continue ..... :)

April 28, 2005 - 11:04pm :

A basic repeat of yesterday - with a slight improvement. The physiscal conditions continue to improve in a fantastic rate. However, he was still a little bit out of it - and the sedatives are reduced to an as needed basis. As long as the physical continues to improve, we will manage with the temporary dimensia.

He did 2 more sessions today where he was able to breathe on his own - first for over 8 hours - and this time the ventilator was completely in standby mode (basically powered off). The second was about 4 or 5 hours when we were kicked out, and in that case, the ventilator is put into a mode where it will force him to breathe if he forgets, otherwise he has to find a rythym and breathe for himself. He wasnt able to get by with the speaking device today - so possibly tomorrow.

April 27, 2005 - 11:34pm :

A strange day today - the physiscal conditions are improving in a fantastic manner. And there were moments when he was sharp as could be, mentally, today. However, when it came time to leave, he didnt seem to like the fact that he had to stay overnight - that caused a bit of panic in us.

He is awake alot now - awake and alert enough to become frustrated ... regularly. He did 2 sessions today where he was able to breathe on his own - first for 6 straight hours, and the second was 3 hours when we were kicked out. In those two cases, the ventilator is put into a mode where it will force him to breathe if he forgets, otherwise he has to find a rythym and breathe for himself. Tomorrow we shoot for 12 hours straight - and if all is good, he can get off the ventilator.

They tested a speaking device today which was really quite impressive. It connected to the traecheostomy tube, and allowed voice to come out - almost like his real voice. It worked well, but he has to be off the ventilator for that to work - so it can be used in emergency right now, otherwise full time wont be until Friday at best.

Standard Note : we are still keeping the visitation to a minimum, at his request now, but if this trend continues, we may get to a regular room soon. We will definately keep you all posted. Once he's in a regular room, we will let everyone know that its ok to visit - even if only for a short while. And not to sound repetitive, but as always, thanks again for all your wishes and prayers - they mean alot to us.

April 26, 2005 - 11:04pm :

A good day today. Dad is awake alot now - still a little groggy from the sedation that remains, but alert enough to become frustrated. He did about 2 or 3 sessions today where he was able to breathe on his own for two or three hours. In those two hours, the ventilator is put into a mode where it will force him to breathe if he forgets, otherwise he has to find a rythym and breathe for himself. So he went through that excersize three times today I think. Pain really hasnt changed much since yesterday.

Funny point today though - in the evening, while I was trying to understand something he was saying to me (which incidently turned out to be that he wanted to sit in a chair), he got frustrated with me and mom trying to figure it out. So I went to get the nurse who was excellent with this, and when he first tried with her, I repeated what I thought he said .... so he looked me right in the eye, and with excellent pronunciation (albeit silent - we still just read lips), told me to SHUT UP! So I guess that was good ...

We are hoping to get the physical therapist in tomorrow for some analysis, but we will know more after we see her.

April 25, 2005 - 10:48pm :

A good and bad day today. Dad is still able to wake up on demand, and what is really great news is that he is now able to breathe on his own for two of every eight hours. In those two hours, the ventilator is put into a mode where it will force him to breathe if he forgets, otherwise he has to find a rythym and breathe for himself. So he went through that excersize twice today. The bad news is that there is still a bit of internal bleeding, so it seems he wont get off the IV based nutrition tomorrow either. In addition, there was a period of deleriousness today, but it wasnt constant - so Im willing to call it an anomaly if it doesnt return.

The pain situation is really the same - the majority of any pain (outside of the all-over-body-pain, and tingling-skin feeling) is the shoulder and back. So he may still need some pain medication, but that remains to be seen.

Communication was a little bit easier for me today. I'd say for every ten times he said something, I got about eight of them. That is a sharp contrast to yesterday, where that number would have been one or two. It continues to be a little tough to communicate though but better overall. Of course the tracheostomy is still in, so of course he cant speak yet. The specialists all continue to believe he will be able to get off the ventilator in a few days.

There is still a long road ahead for physical therapy, but the complications part of this journey may finally be almost behind us.

April 24, 2005 - 11:08pm :

Another pretty good day today - no blood, no dialysis, no new complications. He is able to wakeup on command, and is up a good deal of the time on his own now. The sedative is almost reduced to nothing, and in just a few more days it will be. Half of the specialists visited today and were all very pleased with the progress.

The majority of any pain now (outside of the all-over-body-pain, and tingling-skin feeling) is the shoulder and back. So he may still need some pain medication, but that remains to be seen.

It continues to be very tough to communicate though because the complete muscular function isnt back yet, and he cant quite move his lips enough to read - at least not for me anyway. Its truly harder to read dads lips than I expected - much harder than it was before he took the 10 day *nap* - and what we find hes saying is that he wants to get out of bed. That is pretty encouraging.

The tracheostomy is still in, so of course he cant speak yet. The specialists all seem to believe he will be able to get off the ventilator in a few days - that would be great.

There is still a long road ahead for physical therapy, but the complications part of this journey may finally be almost behind us.

Standard Note : for anyone new to the list that may not have heard, we are still keeping the visitation to a minimum, but if this trend continues, we may get to a regular room soon. We will definately keep you all posted. Once he's in a regular room, we will let everyone know that its ok to visit. And not to sound repetitive, but as always, thanks again for all your wishes and prayers - they mean alot to us.

April 23, 2005 - 8:33pm :

A pretty good day today. They removed the dialysis line because hes urinating enough that they think the kidney function seems to be good enough that they dont *think* he will need the dialysis again - but its not an exact science, so its still possible. Another new fever did appear again, but it was yet another low grade, and was down to 99.2 by about 7:00pm.

But, he was wide awake when I went in, and he is at least semi-conscious. I think he is fully conscious when hes awake, but the jury is still out - he has moments where he is dazed-n-confused, but thats not really all that surprising. He seems to understand everything when we talk, but he just cant reply. Hes feeling all kinds of sensations and was moving his legs a little bit today. He also moves his shoulders too - so we really cant wait for next week to begin some physical therapy assessments.

It still is very tough to communicate though because the complete muscular function isnt back yet, and he cant quite move his lips enough to read - at least not for me anyway. The tracheostomy is still in, so of course he cant speak yet - we just need to find a way to communicate that works for all of us. As always - we remain cautiously optomistic.

April 22, 2005 - 11:04pm :

An up and down day today, but the up part sticks in my mind. There was some internal bleeding discovered today, so he didnt get any feeding today as a result. In addition, four units of blood were added, so no dialysis was performed either. And a new fever did appear again, but it was another low grade, and was down to 99.7 by about 10:00pm. So that pretty much constitutes the bad part.

So as for the good part ... the hiccups seem to be gone, and there is still reduced coughing now. The pain shots continue to be administered periodically. The good part though is that he is really opening his eyes and starting to focus. And he feels pain now - real and new pain - not the back pain or sore throat that have been a problem as of late. Today when the nurse put his air boots on, you could see his face express all new pain from muscle movement - and I asked him if he felt that, and he nodded yes. He even tried to mouth some words to mom - so hes starting to come around a bit.

As always - we remain cautiously optomistic. He continued urinating today, which is still a good sign, but I am not sure if the results came back from the testing of the toxins level ... so we contiue to await those results.

April 21, 2005 - 10:48pm :

Overall - mostly the same status as yesterday - which isnt such a bad thing. Dialysis did not take place today. No additional transfusions were needed today. Although a new fever did appear, it was a low grade, and was down to 99 by about 9:30pm.

The hiccups have gone, and there is reduced coughing now - but we are getting better at knowing when to suction his lungs to supress the coughing in general - live and learn. His sore throat persists as well, but it seems slightly less now. Its not as much of a nuisance ... but then again, even though the sedative has been lessened, the pain shots are still administered periodically.

He opened his eyes a few more times today - and for a little longer than yesterday. At times, he had his eyes open for over a minute. That seemed pretty encouraging. However, while they are open a little longer, the focus on the objects in front of him, its still a little off - but improving. He also continued urinating today, which would indicate the kidneys may be beginning to regain some functionality - but it is stressed that we not jump to conclusions on that until the samples come back - its still possible to urinate but not filter out the bodily toxins ... so we await those results. Dialysis is still judged on a day-to-day judgement call basis, so we wont know until tomorrows tests if the dialysis will be needed or not.

Now we just have to get all these complications out of the way so we can finally address the situation he was actually admitted for - the GBS.

Standard Note : for anyone new to the list that may not have heard, with the dialysis going on, and with his general overal uneasiness, we are asking that all visitors hold off until after he moves to a regular room. We are even trying to limit the immediate family to one visitor at a time to prevent any further disturbances. Our whole goal right now is to correct these respiratory issues as soon as possible. Once he's in a regular room, we will let everyone know that its ok to visit. And not to sound repetitive, but as always, thanks again for all your wishes and prayers - they mean alot to us.

April 20, 2005 - 9:58pm :

Dialysis did not take place today. The feeding tube was relocated from his nose to his stomach - something about going in through the navel. No additional transfusions were needed today. The fever passed so things are stabilizing now.

The hiccups have gone, but the coughing is now getting more pronounced. Thats not a bad thing though because with the ventilator still hooked up via the tracheostomy, we need to see that he is strong enough to attempt taking him off it, and coughing is one of the important things he will need to be able to do. His sore throat persists as well, but again, thats not really a surprise.

He opened his eyes a few times today - mostly for the doctors when they shout his name. However, we did see them open one time for almost 30 seconds. While he is still not able to fully focus on the objects in front of him, its still a step in the right direction, and is a positive sign. He also started urinating again, which would indicate the kidneys may be beginning to regain some functionality. Dialysis will be on a day-to-day judgement call, so we wont know until tomorrows tests if the dialysis will be needed or not.

April 19, 2005 - 10:32pm :

Dialysis continued today for another few hours but no additional transfusions were needed today ... so that was nice. The fever from Sunday finally passed, and at the close of the dialysis - about 6pm, it was at a normal 98.6 degrees. Antibiotics were changed again in an attempt to control these fevers.

The hiccups have gone, but tonite they were replaced with the shivers. It seemed he started shivering, and his temperature was rising again. We turned off the fan at that point, to try and take the wind chill out of the room. So it appears that after getting rid of the one fever, its now replaced with another. We saw the temperature rising about one tenth of a degree every 10 minutes on average. From 8pm to 10pm for example, it went from 99.4 to 100.9.

His sore throat persists as well, but thats not really a surprise. He is still not awake, although he opened his eyes two or three times today - no more than a split second at any time, and while his pupils were nowhere near focused, the lids did open.

April 18, 2005 - 11:05pm :

Dad is still relatively comfortable with the tracheostomy, but we were really hoping he would wake up today. However, that didnt happen, so we will take another whack at it tomorrow. He still has those moments where he goes through the hiccups and they are truly scary looking - and he exhibited a new non-hiccup breathing pattern tonite that was almost as shocking. However, he also has periods where his is so peaceful and comfortable. He still has a very sore throat and when he tries to swallow, it looks incredibly painful - just like the Chloraseptic commercial if you remember that.

The fever from last night has persisted, albeit less. It was even lower than yesterday, but surprisingly still present - thats over two days now. As of 10pm, it was 100.5. We are sticking with the floor fan mounted high - that kept the air moving, and is still helping, but the warm temperatures outside are causing the room to get warmer than we'd like as well.

He did have kidney dialysis today. He also recieved two more transfusion units. However still no plasmapheresis yet.

April 17, 2005 - 11:59pm :

Dad is definately looking more comfortable with the tracheostomy in place of the breathing tube. He has moments where he goes through the hiccups and they are truly scary looking. He has also developed a very sore throat and when he tries to swallow, it looks incredibly painful.

The fever from last night has persisted. It was a little lower but still present. As of 10pm, it was 101.3. We abandoned the cold-pad in favor of a floor fan mounted high - that kept the air moving, and helped him get from 101.6 down to the 101.3 mark.

Antibiotics were changed again today - not sure what from and to - its getting so hard to keep up with all the drug names, and antiobiotic families. The swelling in his arms and legs appears to be getting even better, although its far from gone. Still, I want to avoid being too positive though, because the last two times we got confident like that, there was another large setback.

We had no kidney dialysis today. So still no plasmapheresis yet, either. At best, that wont be until the fever is under control. He did have a one pint transfusion today - not sure of the full details behind it, but we may find out more tomorrow. However, we are excited for tomorrow (Monday) because the doctors are going to try and wake him up - we really cant wait for that.

April 16, 2005 - 10:39pm :

We are very happy that the tracheostomy was finally performed. Dad seems so much more comfortable in the bed now. We can see his mouth and are very anxious to wean him off the sedative and possibly start to read lips. However, the doctors want to first let him get a good 24 hours of rest following the surgery of the tracheostomy operation. He did good in the operating room from what they say though. So we wait until some time tomorrow to really wean him off the sedative and start to try and wake him up .... if he doesnt beat us to the punch.

The fever from last night has persisted through the night and into today. It was as high as 102.9 today around 7pm, and was about 102.6 at 10pm. The nurses have been using a cold-pad to keep him cool. This is kind of like a heating pad, only its about 2 feet wide and about 5 feet long. Its draped over him like a blanket and its set for 64 degrees - its cool to the touch. Its helping to keep his body temperature down at this point. The heart rate had risen today, but seemed back under control around the 10pm mark.

Antibiotics were pretty consistent at this point. They continued through the day today, and the swelling in his arms and legs appears to be getting under control. I want to avoid being too positive though, because the last two times we got confident like that, there was another large setback.

We will be going with regular kidney dialysis from here, and the decision of using CRRT was finally made - it wont be done that way. So no plasmapheresis yet, not sure when that will begin.

April 15, 2005 - 11:00pm :

Well, the fever seemed to be going away, but right before 10pm, it spiked up a bit again - it hit 102.3. As a result, the night nurse will be using icepacks and whatever else to bring the temperature down. Antibiotics were changed because there was some suspicion that they may be causing the reaction, so tomorrow we will be going back on the Levaquin for a little while. Its imperative to us that the fever be contolled because they wont do the tracheostomy if he has a fever, and we really want him to get that done - then he can have his sedation reduced, and we can begin communicating.

Another day passed without plasmapheresis again - due to the fever mentioned above, they decided against the plasmapheresis and went with another day of dialysis. He has dialysis in the morning, followed by the tracheostomy (we hope).

Regarding the CRRT, we still dont know when/if that will happen. We have heard that he will be fitted with a CRRT setup, which will run the continuous dialysis around the clock, but it just never seems to materialize. This was now the third time we have been told that it may happen, but it didnt.

As before, the thinking is that once he has the tracheostomy done, and the tube removed, he will not need as much sedatation any more. And if we can somehow avoid the CRRT, then he will end up in a room outside of the ICU. However, if he needs the CRRT, then he stays in ICU. If he doesnt get the tracheostomy, he stays in the ICU. So we are pushing for the tracheostomy so that we can start communicating again (we should be able to read his lips until his voice returns).

April 14, 2005 - 10:25pm :

Not much to report today, which is a good thing considering the events of late. He had the dialysis again today. It was supposed to be plasmapheresis today, but for whatever reason, was kidney dialysis again. The plasmapheresis will begin tomorrow. The plan at this point is to have kidney dialysis on Saturday morning, then off to get the ventilator pipe removed in favor of a tracheostomy.

We have heard that he will be fitted with a CRRT setup, which will run the continuous dialysis around the clock, but it just never seems to materialize. This was the second time we have been told that it may happen, but it didnt.

The thinking is that once he has the tracheostomy done, and the tube removed, he will not need as much sedatation any more. And if we can somehow avoid the CRRT, then he will end up in a room outside of the ICU. However, if he needs the CRRT, then he stays in ICU. If he doesnt get the tracheostomy, he stays in the ICU. So we are pushing for the tracheostomy so that we can start communicating again (we should be able to read his lips until his voice returns).

Im including a link to a document describing alot about the kidney and its function. This was useful because we are focusing so much of his recovery on the kidney and lungs right now. This was useful in understanding some of the functions, and most of the odd words the doctors have been using :

http://my.webmd.com/content/article/8/1680_51131.htm?printing=true

Technical Note : this webpage will now update automatically every 60 minutes. I understand some readers didnt realize they had to refresh for updates, so that function is now built in. Once per hour, this will automatically update and mark the last update time in the upper right hand corner.

April 13, 2005 - 10:50pm :

Today was a bad day overall. From the wee hours of the morning, it was tough. Dad bit through the small tube that goes with the ventilator tube, and it caused a problem. In the process of removing the tube and putting in the new one, there was some trauma, and he was bleeding in the mouth/throat area. This caused a great deal of discomfort, and he is now fitted with the anti-bite prevention device, which makes things further uncomfortable for him.

In the process of all this, he has developed some additional pneumonia, and that in itself is creating further breathing issues. He is unable to exhale all the way because of that lower-lung pneumonia, and that makes it seem like his lungs are inflated all the way, and he is still trying to breathe in. Its as if he has short breaths at the top range of the breathing. This appears difficult for him.

Due to this complication, he was not able to be tested for removal of the ventilator today as originally hoped, and he will not be able to be tested tomorrow either due to the trauma caused by this morning's incident. That means the earliest he will get off the breathing tube will be Friday .... if this week at all. We are unhappy with that, but have no choice.

He also had the dialysis again today. Tomorrow is plasmapheresis again. Then at the completion of that, he will be fitted with a CRRT setup, which will run the continuous dialysis around the clock.

For anyone new to the list that may not have heard, with the dialysis going on, and with his general overal uneasiness, we are asking that all visitors hold off until after he moves to a regular room. We are even trying to limit the immediate family to one visitor at a time to prevent any further disturbances. Our whole goal right now is to correct these respiratory issues as soon as possible. Once he's in a regular room, we will let everyone know that its ok to visit. And not to sound repetitive, but as always, thanks again for all your wishes and prayers - they mean alot to us.

April 12, 2005 - 6:50pm :

Today was the first day of plasmapheresis. Its similar to the dialysis, yet different. This is supposed to work wonders for the Guillian Barre, and we are very anxious to see that come true.

We have now completely weaned him off the sedative he's been on since he's been on the ventilator. They dropped the dosage down to zero on the sedative, and now he's on a different type of medication to keep him a little less sedated, but still semi-comfortable. We notice a bit more agitation on his part, but he is still getting good rest, and this is a neccessary evil in order to properly assess his condition and status.

Tomorrow we are going to see if we can get him off the ventilator as well. The doctors tried to wake him up today (verbally) but he apparently didnt want to wake up just yet. We are hopeful that tomorrow he will wake up from the sedation, to see if he is strong enough to breathe without assistance. If so, we will remove the tube from his mouth/throat. If not, he will have a tracheostomy performed so that it will help reduce the risk of infection. Either way its a positive thing, because we will be able to finally communicate via lip reading - thats a huge step forward.

Further on the new bed - it seems alot more comfortable. You can see he's expressing pain, which is good in a way because it shows he has feeling now. But all in all, he's more at ease in this bed than the other. And Im not sure how I can tell, but I can just see that this bed offers different body positions that make the most subtle differences to help with the comfort.

His blood pressure was getting a bit higher last night and today as they stopped the sedative. So a new medication was added to the mix to help control that. Normally the higher blood pressure was a sign of pain, but this may be a bit different - still not exactly sure.

For anyone new to the list that may not have heard, with the dialysis going on, we are asking that all visitors hold off until after he moves to a regular room. There are pretty big restrictions on visitations in the ICU, so we want to let him get as much rest as possible, and not anger the nurses. Once he's in a regular room, we will let everyone know that its ok to visit. And not to sound repetitive, but as always, thanks again for all your wishes and prayers - they mean alot to us.

April 11, 2005 - 10:50pm :

Today was the second hit of dialysis today - 4 hours this time. I dont know that we can see him improving from that yet, but we know its helping anyway.

We are also now actively trying to wean him off the sedative he's been on since he's been on the ventilator. They have been dropping the dosage throughout the day today and night time as well. Everyone feels he has been sedated for quite a while now, and we need to start bringing him back to some level of consciousness to assess the conditions and situations, evaluate his strength, and find out a few other things.

Plasmapheresis to start tomorrow as well - that is rumored to be very helpful for this. The nurses say this is going to be very good for him. Apparently we can run the dialysis and plasmapheresis at the same time, which seems surprising on the level, but we have all the experts involved.

Speaking of the experts, we have specialists assigned to his case for kidneys, gall bladder and liver, speech therapy, physical therapy, cardiology, respiratory, nerves, and diseases - all working on him to be sure we have the best on the job. We also have the head of the entire Intensive Care and Critical Care project managing the whole effort now. They had a meeting this morning to put all of their heads together and work in a more team oriented fashion. This is very confidence inspiring.

The overall is also going to be to try and wean him off the ventilator as well. We figure that if he proves strong enough to breath without assistance, we will remove the tube from his mouth/throat. If not, he will have a tracheostomy performed so that it will help reduce the risk of infection. Either way its a positive direction, and we expect to have made that decision within the next two days.

Last but not least, he was moved to a much more comfortable bed tonite - its called a Flexicair bed. Its highly customizable, and fully adjustable. He seemed very comfortable after being moved to that bed, so we are optomistic that it will help with the back/stomach discomfort, and any bed-sores.

For anyone that may not have heard, with the dialysis going on, we are asking that all visitors hold off until after he moves to a regular room. There are pretty big restrictions on visitations in the ICU, so we want to let him get as much rest as possible, and not anger the nurses. Once he's in a regular room, we will let everyone know that its ok to visit. And as always, thanks again for all your wishes and prayers - they mean alot to us.

April 10, 2005 - 7:20pm :

Not much to update on today or the next few days. Dad was hooked up to the dialysis machine today. This process is expected to run for two to three weeks in all likelihood although there is no definate pre-determined timeframe of how long it will truly last. It will be a day-by-day thing where we find out each day if its needed again the next day or if its no longer needed. This was done today for about 2-3 hours, and will be done tomorrow for about 4-5 hours. He will remain on the ventilator to help the body conserve energy and use it for healing the kidneys.

Nothing further was learned today regarding the infection, catscan, or ultra sound. We hope to get more on that tomorrow.

I will update again in a day or two. Thanks again for all your wishes and prayers - they mean alot to us.

April 9, 2005 - 6:39pm :

For whatever reason, it seems we just keep going in the other direction. Every time we think we are making progress, we find yet another complication.

Originally, he was admitted for the Guillian Barre syndrome. But in the process, the chronic lower back problem kicked up so bad, that we had to increase the pain killer medication so much, it was rediculous. This was needed so that he could get the much needed rest, so the nerve endings could regenerate themselves. The pain had been so bad that he had to stay in a recliner that we moved up and down, back and forth - all to try and ease the discomfort - there was no bed that would work for this.

However, on April 7th at about 6 am, the real complications began. Breathing became so troublesome, that we had to put him on a ventilator. That necessitated a move to the bed, so that the tube could be put into his throat to help him breathe. We did that, knowing that it would create its own series of discomforts, but at least he would be able to breathe. So that was done, and he's been on the ventilator ever since - but the discomfort from that tube in his mouth/throat is such a problem, we have had to sedate him so heavily - just so that he wont try to bite the tube, or pull it out - we even had to restrain his hands/arms so that he wouldnt try to tear it out.

This turned out to be pneumonia that was causing this. Somehow, while treating the nerve condition of GBS (Guillian Barre Syndrome), he developed this new infection/condition. This is what was causing the collapsed lung situation, and other complications. As of April 9th however, that condition is now in remission, and the chest xray from this morning shows that the pneumonia seems to be under control now - no more fluid in the lungs, etc - but he will remain on the ventilator, so the body can conserve its energy for another series of problems .....

Because as it turns out, this has created its own series of new complications. Whether from fitting him with the catheter, laying him down in a bed, or something entirely different that we dont yet know, he has now picked up some nasty new infection that we dont quite know yet - and that has started kidney failure. So all work on the GBS is now put on hold while the kidney specialist tries to get his kidneys back in order.

As a result, we are putting him on the CRRS (continuous recovery something something) as soon as tonite. This is a process similar to what the plasmapheresis was going to do, where the doctor sticks an incoming and outgoing artery, pulls the blood from the body, cleans/launders the blood (not platelets in this case) and replaces it back into the body. Its basically going to serve as an artificial kidney - while the body tries to heal the kidneys that are failing. There is no medication to correct the kidney condition - the body must do this on its own - this process is anticipated to last between two to three weeks - perhaps even longer. During that time, not much else will be going on - so all other treatments will really be on hold.

He currently continues on the antibiotics to fight the infections, and we have an infections disease specialist reviewing the blood cultures. We had asked if the body can survive on one kidney, but the specialist said that unless the patient is a diabetic (and he's not), the kidneys work like a tandem pair in the body - if something affects one, its affecting them both. Only in a diabetic type of patient do the kidneys ever begin to work differently from one another. So there would be no relief removing one kidney in this case.

So we are dealing with all that right now. We are waiting for today's mid-section cat-scan results, today's blood culture results, and a few pieces of other information, so that we can see if anything shows up with more information and further diagnoses or confirms some of these conditions. So at this point, thats all we really have.

If you can believe it, we are still optomistic, because as we keep getting these complications he fights through them to get to the next one - he's a helluva fighter. We just wish that he wouldnt get so many different punches thrown at him while he deals with all this .... but its not really up to us I guess. He just keep fighting ! I guess two or three days to beat pneumonia isnt really bad when you think about it. Once we get some stability on all these external variables, we should be on a path to recovery. More to follow.

I will update again in a day or two. Thanks again for all your wishes and prayers - they mean alot to us.

April 7, 2005 - 7:53pm :

All - once again, thanks for all the ever growing list of people expressing concern - it means alot to him (and us).

Last night and today have been very difficult. Its been a very uncomfortable period since about Wednesday morning, and reaching what I consider to be the worst point yet - at about 4am to 7am today. That is when he was moved from the chair to the bed, had the catheter fitted, and was unable to get enough oxygen.

Dads had a fever - small at first, but it has spiked up to 102.8 today. The doctors can not tell where the fever is coming from, but have also noticed a great deal of lung capacity issues and think he's developed pneumonia also. 30% of blood culture tests dont show pnemonia so its tough to say for sure - could still just be some sort of other infection. The chest X-Ray shows collapsed lungs - approximately 1/3 to 1/2 of their usual capacity.

The doctors re-reviewed him and are thinking of putting him back on the treatment - this one not the immunoglobulin type though - this is dialysis like. Its called plasmapheresis which runs every third day. Plasmapheresis is a method by which whole blood is removed from the body and processed so that the red and white blood cells are separated from the plasma, or liquid portion of the blood. The blood cells are then returned to the patient without the plasma, which the body quickly replaces.

We are continuing to spend a great deal of time at the hospital - just continuing to try to keep him comfortable - so we have been very busy with all that, Which is why so many of you have not heard from any of us since last week. We thank you again for your offers of assitance, but have not had the opportunity to respond to all of you - please dont be offended.

We remain optomistic in this period, because the doctors keep ensuring us that a full recovery is still possible. So thats it for now, I will update status in a day or two.

April 5, 2005 - 6:57pm :

All - first and foremost - thank you ALL for your phone calls, visits and best wishes - there have been well over a hundred requests for forward your best to him, and he (and we) greatly appreciate it. If you'd like to have anyone else added to this "every other day" distribution, please reply to me with the email address and I will add it.

He currently remains in intensive care at St Barnabas hospital, and will likely be there through the end of the week at minimum. Below is another weblink with some additional information on this Guillain-Barre syndrome, which helps provide some additional points of view and facts on this rare friekish condition :

http://www.jsmarcussen.com/gbs/uk/uk_index.htm

Many of you have asked how this happened, when, and why. The why is the easiest to answer - we have absolutely NO idea, nor do we expect to ever know. Like yourselves, we have more questions than answers. As for how and when ..... It seems that on Thursday morning last week (March 31), it began with a slight tingling in the extremeties - hands and feet. That in itself was not completely recognized as a problem, because we live and work with pain and discomfort regularly, so it wasnt percieved to be anything serious - just sleeping wrong or a pinched nerve perhaps. But he began to weaken a bit after that.

By Friday (April 1), the weakness had become so bad that standing up was tough. Still thinking it was just a pinched nerve or similar, he raised no great concern. He was beginning to have trouble walking in the morning, so Steve and Pete carried him to the Chiropractor to see if it was related to the back. Laying down caused some additional discomfort, so he was sent to the regular doctor instead.

We went to "Dr Vito" in Caldwell and he diagnosed the condition right away, which was both incredible considering he's not a specialist and considering the syndrome is a rarity. This appears to be a very good thing because knowing what it was allows for immediate treatment.

As of today, he has weakend again. Yesterday was a fairly good day - he was almost able to raise his hand to his face, however we think this has fatigued him and he is not getting any rest overnight even with all the meds. So we are taking it really slowly. He is no longer wiggling his toes or ankles, but a worsening of the situation is unfortunatley not unexpected. It seems that a good day is directly tied to the good night sleep before and vice versa. Since we have had one good night and three bad nights of sleep, we are trying to figure out what made the one night good.

Last night Dr Vito seemed to think that he may be finally reaching the plateau phase. The degrading conditions seem to be degrading less each day if you can believe that - I mean how much more can it really degrade, but then again, we make a habit of never asking questions we dont want to hear the answers to :) So we think he may be stabilizing, which would be great. That would mean that we would spend a day or two in the same condition before some touch-sensitivity and feeling may start to return. However, thats when the real difficult part begins because he will begin to feel great pain in all the areas of atrophy, and need to begin trying to work them back into usage.

One thing we learned over the last few days though is that our original optomistic time frame was not accurate because we had nothing to base it on. The recovery period is expected to last up to 6 months or more before he is restored to functionality (walking, talking, eating, etc) - if we can be so bold as to assume a full recovery. But anyone that knows dad, SURELY knows of his persistence, stubborness, and perseverence - where did you think I got it from ? So we are hopeful to make better time than all the cases we have heard of, but thats not a guarantee of course.

We are spending a great deal of time at the hospital moving the bed/chair back and forth, a few degrees here and there, feeding him ice chips - all that sort of thing - just trying to keep him comfortable. That in itself is a full time job - so we have been very busy with all that, which is why so many of you have not heard from any of us since last week. We thank you again for your offers of assitance, but have not had the opportunity to respond to all of you - please dont be offended.

Thats it for now, I will update status in a day or two.

April 3, 2005 - 11:35am :

Hey guys, I figured it would be a little easier to update everyone on Dads situation this way instead.

Dad has some sort of a "temporary paralysis" conition. He is currently "paralysed" from about the shoulders down, because he cant do anything requiring muscular control - has no strength, cant stand up, cant really lift his arms to drink without a straw, etc. He is fully coherent, has no mental issues, and can talk, speak, remember, get angry - all those good things - no issues there. He can move his toes and fingers, and rock his ankles side to side and stuff, but has no strength to situp, squeeze a finger, or lift his legs.

The condition is known as Guillain-Barre syndrome. The paralysis effect basically works its way up from the feet onward up the body. If it is not stopped, treated and reversed, it becomes life-threatening. Once it reaches the lungs, breathing will stop because the lungs cant pump air. Thats when the ventilator will be needed. It can also affect the heart as it moves up the body, and that will mandate a respirator. If it reaches the throat, then swallowing/etc is a problem. Im sure you get the idea.

He's in intensive care now at St Barnabas and is fully monitored and watched 24x7. He can not eat solid foods or have any thing to drink - its pure IV at this point. He's currently recieveing the treatment available for the syndrome, and we are waiting for the effect to stabilize and start its reversal.

Once the condition levels off - basically hitting some sort of end point on its way up the body - the doctors will be able to tell and then they can watch it begin recovery back down the body. Once that happens, he will be moved off to regular room. We expect that day to be between 3 and 12 days away, although some cases have taken up to a month, so truthfully we have no idea when it will be - we tend to think it will be in the next 48 hours for whatever reason.

Here is a link to what he has - its pretty much 100% dead-on accurate for what has happend, how quickly, how much, etc.

http://my.webmd.com/content/article/6/1680_51334.htm?printing=true

Cases seem to last 2 weeks to a month on average. Most make recoveries. But the true life-threatening part is still to come if the stabilization doesnt occur soon.

I will update you as more information becomes available, but at this point, its just a lot of waiting around the hospital and trying to ease his discomfort (chronic back issues make it tough to get any rest).