Mom has continued to progress.  She counts the days until her next Prednisone decrease.  She went to Mayo again for a checkup recently, and also had an appointment with Dr. Kim just prior to that.  She only sees Dr. Kim monthly now.  She continues to have her blood values checked weekly.

For those that see Mom for the first time in a while, they all recognize how much progress she's made, both physically and mentally.  The mental "fog" while still there occasionally is drastically improved.  Her Wegeners is definitely in remission.  The doctors at Mayo are talking about getting her off ...<< MORE >>

As most of you know, Dad has been out of rehab now for a few weeks.  He's getting stronger and stronger every day.  He is having some issues with his back with quite a bit of pain, and we're not sure if this is hip related, compensatory, or what.  He's seeing the hip surgeon soon to get an assessment of that.  But his spirits are great.  He's using his cane somewhat but he's quickly minimizing that too.  He is good about knowing how far he can walk and keep his breathing proper.  In his words "all is well".  We're ending this blog category now as he's basically recovered from this episode.

Of interest, there was a recent outbreak of Legionnaires in Illinois of about 6 cases.  This one had something to do with a supermarket and perhaps the misting systems for the veggies.

Dad greatly appreciated all the support everyone gave him.  Thanks tons!

SO sorry for the delay.  Things have been quite busy.

You'll all be happy to hear Dad / Joe is doing much much better.  He's walking now with the assistance of a walker, and can navigate the stairs with the assistance of a railing and a cane.  His speech is near normal.  They are still working with him somewhat on managing his oxygen utilization.  He is learning to gauge when his oxygen is off and take appropriate rests.  He is also learning to breathe properly to maximize the utilization of oxygen.  This may be a permanent thing with him.  Not sure.  ...<< MORE >>

Mom had an appointment with Dr. Martin yesterday and her PT today.  All looks good and she continues to progress.  Her Pred is now down to 20mg daily and her memory is definitely improved although she's still having difficulties.  Her left leg, the one that was replaced last year, is getting stronger.  She had been having problems with this being particularly weak.  Her PT today said she is definitely getting stronger, and is evident even in the way she walks, which we have all seen as well.  He strongly encouraged her to use her cane if she felt at all ...<< MORE >>

Dad will be released from the hospital likely Wednesday 10/1 at around 9 - 9:30am.  He has decided to check into the Inpatient Rehab facility at Meriter Hospital.  This sounds like a great program and dad thinks he'll be there max 14 days.  He did take about 5 steps on his own yesterday.  On his own meaning with a walker and with two people at his side to catch him if he fell, but not providing weight support.  He'll have a private room at Meriter given his MRSA status (has a colonized MRSA in his lungs...not a great concern of ...<< MORE >>

Saw dad yesterday.  He's doing much better, in particular his voice.  He gets a bit hard to understand if he's been talking for a while (ie long sentences) but overall he's pretty understandable.  No real idea about his release.  We're guessing between this evening (longshot) and Thursday.  He wants to go directly from the hospital to one of his friends up in the Dells, although I'm trying to convince him to go to an inpatient facility to get his rehab kick started.  No idea really how long the rehab will be but best guess is 4 to 12 weeks.  He's ...<< MORE >>

Mom had an appointment with the LPN today to get her anemia shot and review the results of her blood tests.  All in all, from what I understand, her white blood cell count is good, which is great considering this has been a problem in the past every time she's gone on the Cytoxan.  I believe I was told her red blood cell count and platelets are also good.  I think her kidney values went up a bit (which is the wrong direction), but nothing too alarming.  They were down last time.

No change yet to her prednisone.  Probably will be another week for another reduction.  Her appointments for the anemia shots are now every 2 weeks, again good news that she needs these less.  She's on and off one of the blood pressure meds depending on where her BP is.  When she's on it she seems more likely to have the shaking difficulties and/or dizziness, although now she is much more aware when this is about to happen and more able to cope with it.

Again, slow steady improvement.  We expect perhaps another 3 months of difficulties for her.

I saw dad today.  At the end of my stay he had been moved from ICU to a regular, although private, room.  He seemed very good today.  He's back on a normal diet, although he didn't seem particularly hungry.  His cognitive abilities seem really good all things considered.  Each day, there are a couple of "huh?" moments, but other than that he was able to tell me the fastest way to get from Madison to home (and he was right no less, down to knowing that the hospital was very close to Park Street), he remembered a birthday from just ...<< MORE >>

More good news today!  Dad got to eat and drink today and the doc's believe he will be transferred out of ICU today or tomorrow.  The biggest thing they are trying to manage at this point is weaning him off the meds.  Because he has been on them so long, they are concerned about him going through withdrawal. 

Paula and Aunt Marni went to see him today so perhaps they can add comments as to how their visit went.  I did get a chance to speak with him briefly and, although raspy, he sounded great!

Thanks again to everyone for their ...<< MORE >>

As the urgency of dad's condition has escalated, we've slowed down on updates on mom.  This is also consistent with little dramatic changes.  We no longer have the day to day crises we were dealing with her her condition.  Now, she makes slow steady improvement.  There is still some significant impairment of memory, but that seems to be improving with the reduction of the prednisone.  She's also in PT now.  She believes she is getting weaker, and we're not sure how much of this is related to the disease process and how much is due to fatigue from the additional activity she has now vs. the past few months.  She does have some period where she will suddenly get a case of the whole body shakes, and pretty significantly.  Her overall condition, however, in the last 4 weeks is significantly improved versus, for example, her trip to Mayo which I believe was mid-August.  She has a return trip to Mayo scheduled for 10/13.  She is wearing a medical alert necklace.  We (the kids) are still helping her with her meds because cognitively she's still just too out of it to remember to do it.  She is frustrated with her lack of independence, and we are helping her gain some back by having her pull her own meds while we watch and double-check.  She usually does a good job of pulling them and taking them, but she still needs to be reminded to actually do it.  Otherwise she'll just start eating and forget she needs to do this. 

She continues to get blood draws weekly, and she had been battling trying to tolerate the Cytoxan, which is the cancer drug they are using to keep the Wegeners away.  We'll know more tomorrow how well she's tolerating it.  She is still getting weekly anemia shots to boost her red blood cell count.  Her kidney values have been improving lately, which is good since we weren't sure if they'd respond any more than they had already.  She's seeing her Nephrologist only monthly at this point, which is a change from previous where it was bi-weekly.

We will continue to update her condition probably monthly to coincide with her doc appts.

Dad is making progress, but the doc's always caution that it is "still early in the game". 

They increased his oxygen to 35% today which is not abnormal to increase at times.  He has problems sometimes when they turn him from one side to the other and this sometimes causes a need to increase the oxygen  Again, normal oxygen percentage is 21% and he was at 70% for most of his stay in Baraboo.

The other variable to watch is his peep, which measures the amount of pressure needed to inflate is lungs.  They decreased this to 8 today.  Normal is 5% and he was at 15 most of his stay in Baraboo.  This is movement in the right direction.  The less pressure needed to work the lungs, the closer he is to breathing on his own. 

They may have him try and breath on his own tomorrow morning if everything stays as is.  Although the nurse cautioned that it is not abnormal for it to take several attempts before this is successful.

Please see the link on this page to receive automatic updates via email.  We are trying to limit the calls to the doctors and nurses and use this as the main source of information.  Please pass this along to anyone following dad's condition.  Thanks!

Jim

It's been 2 days since the update, and I wanted to thank everyone for their nice wishes.  Seems like every time there is an update, a few hours later it changes.  Here's the latest:

- Emmer (that's Jim for those that don't know) talked to the doctor and they mutually agreed to have Dad transferred from Baraboo to Madison (teaching hospital at the University).  Good move.  The approach Madison seems to be taking is trying to save his life.  The approach Baraboo seemed to be taking was not to let him die.  While those seem to be the same thing they're really worlds apart.

- Yesterday was a transportation, communication, stabilization day getting him there. 

- Today (and I think each day now), they will "wake" him (reduce his sedation) to see his level of physical abilities, etc.  He was in obvious pain, according to Emmer, but was able to respond to doctors commands to squeeze his hands, move his feet, etc.  The most dramatic thing Emmer and Colleen both said was the difference between seeing him lying there completely out of it versus being aware, awake, etc.  They both said it was refreshing to see him that way.

- There is another (I think) minor infection going on, but the docs aren't too concerned with it as I think the antibiotics he's on will cover this.

- They had some concerns that there may be more than just the Legionnaires, but Emmer reports that they have narrowed down his disease to just Legionnaires.

- They, as opposed to Baraboo, are expecting him to be on the ventilator for maybe another week.  Doing a tracheotomy is still a possibility as it would allow them to wean him off the ventilator more easily and make the transition easier for him.

- His oxygen level in in the ventilator is now 40%, down from 80%.  Recall, air is 21% so we're getting there.

- Pressures still seem to be high.

- They scoped his lungs today and were able to visually check things out and take a culture of the "gunk" in his lungs. 

- The doc reported that he expected dad to be worse and thinks he's ahead of the game so far.

That's it from the medical side.  On another note, I wanted to share a comment from cousin Jackie that has a link and some information on ARDS that may be of interest.  I am not sure if they are still saying he still has ARDS or if they've changed the diagnosis completely, but it may still be of interest.  Here's her comments:

"...If it helps, a good friend of mine, Eileen, is the president of a national organization/support group dedicated to informing family members of people who have contracted ARDS. Eileen almost died from it when she was in her 30's. There is nothing she does not know about ARDS. The website for the organization is www.ardsusa.org. Take a look. It may be quite helpful. Also, feel free to contact her and tell her that you are my cousin."

There have been a few significant events / changes in the past 2 days, so this will cover them both, in order:

1.  Last night, the doctor advised us they found another infection in dad, this time in his blood.  They suggested that the infection was either secondary to the pneumonia or was somehow introduced from the catheter.  If it was secondary to pneumonia, this is  not good.  Secondary to the catheter is much better news.  The doctor didn't believe it was related to the pneumonia, but said the only way to find out definitively was through a lung biopsy, which isn't an option at this point due to his condition.  They changed or added an antibiotic to treat the new infection.

2.  Today, the doctor reports some cautiously good news.  The percentage of oxygen dad requires is down to 50% (from 80%).  This is moving in the right direction.  They also took a chest x-ray and, in Emmer's words, the doctor said he was "impressed with the improvement from yesterday."  They are contemplating trying to wean him off the ventilator tomorrow.  From what I understand, this means after weaning him off they will take him off sedation and he'll "wake up".  Assuming this happens, he will have no idea what has transpired and there is a chance he'll be quite sore from the ventilator.  However, given his generally positive attitude in life, I think he'll take this all in stride. 

3.  The nurse did indicate to me that assuming he survives this, he'll likely need 1 - 3 months of rehab.  She's speculating on the higher side given he never fully recovered from the hip replacement but it's pure speculation. 

4.  We won't know until he's off the ventilator if there are any ventilator related complications.  Generally they said the longer he was on it the more complications there can be.  When Emmer asked what "long" meant they replied one week.  He started on it Thursday so we'd be just short of that.

Keep your fingers crossed everyone.  Thanks for all who have passed on their good wishes.  There's a lot to communicate and a lot of people wanting information, so we I / we don't respond to your emails immediately, don't be offended, just know that we appreciate all the good wishes are are sending your positive karma in dad's direction.

Tom

Today, Dad muscles were twitching a lot, and this caused some concern for the doctors as that creates an oxygen demand that conflicts with the objectives of the ventilator.  So, they entered him into a drug induced paralysis to keep his muscles from moving.  This isn't something they like to do a lot as the patient could wake up, be in pain, etc., and they wouldn't know it.  However, they felt it was the best option.  After doing so, he developed a fever.  The doctors weren't sure if the fever was related to the paralysis or another infection elsewhere in ...<< MORE >>

A quick update.  On the link I sent you, it mentioned that while it was once thought that air conditioning systems caused Legionnaires, they now believe that to be false, with the major cause being the water distribution system.  Either way, it appears to be NOT from drinking the water, but from aspirating it (choking) which brings it into your lungs instead of into your stomach.
...<< MORE >>

Yesterday, we received a confirmation from the doctor that the bacteria dad is fighting is the Legionella bacteria, meaning he has contracted Legionnaires disease.  For more information on Legionnaires, go to www.legionella.org/general_info.htm.  Legionnaires disease typically comes from air conditioning systems, and it is speculated that the picked this up from the rehab center when rehabbing from his hip replacement.  From what I gather, this basically gives them more definitive information on which antibiotic to treat with, but doesn't really change the course of treatment too much.  They are still dealing with the ARDS and trying to get his lungs ...<< MORE >>

I just got back from seeing dad.  There isn't too much to report.  His condition hasn't changed much.  He's still heavily sedated and on a ventilator, which the doc says is doing about 80% of the work of his lungs.  He had a fever yesterday and today his temp was 99 degrees so from that respect he's better.  The staff said that some with ARDS are on a ventilator for days and some for weeks.  The primary objective is to manage the infection and then try to wean him off the ventilator.  There are possible implications for being on a ...<< MORE >>

This is a new category to help keep people informed about what's going on with Dad.  Dad has come down with a serious bout of pneumonia and now has a complication called ARDS aka Shock Lung.  This is a very serious condition with survival rates somewhere between 50% - 70%.  He is in Intensive Care at St. Claire hospital in Baraboo.

There is a lot of information about ARDS at this link:  www.medicinenet.com/ards/article.htm#tocb.

At this point we know that he is not able to breathe on his own.  He is on a ventilator which is doing about 80% of the breathing ...<< MORE >>

Mom went back to see Dr. Kim yesterday.  Her white blood cell count has rebounded after being off the Cytoxan.  However, as we knew, she basically needs to be on some agent.  He is again trying the Cytoxan but at a lower dosage.  If she does not tolerate this (ie her WBC drops again) he will go to a second line drug.  I don't recall the name but it's not what I had written about before.  Basically, there are fewer side effects with this drug, but it is relatively new, and therefore there isn't a lot of long term history ...<< MORE >>

Mom's blood test results from yesterday came back.  Her white blood cell count is back to being very low (2.3K after it had rebounded to 5.5K).  As a result, Dr. Kim called again today and has again taken her off the Cytoxan, which is the drug Mayo took her off last time.  Mayo had recommended it be resumed after her WBC got above 3.5K, which it did, but now it's back down now.  The guess is that the Cytoxan is having this effect, and it certainly seems to be consistent with the timing.  We have faxed the results to Mayo ...<< MORE >>