update on us from Robin

Thought I would send a short update on the last several days activities.

Steven and Mom traveled to Northern Kentucky yesterday to visit Cardinal Hill in Ft. Thomas. They visited as we are looking at options for a long term acute care facility (LTAC) for Dad.  It was an older and smaller facility, although the personnel seemed very nice and friendly. Compared to other options, it will probably not be our first choice. 

Mom and I went home to Frankfort for her to pick up things she needed today. Then we went on to St. Joseph's in Lexington at Eagle Creek. It is a newer facility and the rooms were good size. We talked to the main respiratory therapist who was friendly and seemed knowledgeable, althought I admit I did have flashes of "Doogie Howser" while talking with him. He was very youthful! They have one doctor, a pulmonary doctor, who is there on staff. There is no rotation of other doctors in and out like we have had here. Of course, if you like the guy that would be a plus, if not, definitely a con. We didn't get to meet him today, he's on his once a year vacation.... Fields luck! 

St. Joe is very selective in their admissions. They have a 92% success rate in getting patients off the vent, but part of that is because they are so selective in who they permit to come in the first place. Dad may not "qualify" due to his many challenges overall. The most concerning it appeared to me from the respiratory therapist was that Dad is currently not responsive. He also indicated that at that facility they don't have access to a neurologist. They have 33 beds overall with 6 dedicated to vent patients. They were going to request updated records from Baptist East today so they could review again based upon our discussion of today. We asked that they try to let us know by Monday if he would meet their criteria or not, so that we could move towards a decision. They did review Dad's medical records a couple of weeks ago and indicated that he was not eligible for their facility at that time, but agreed to look at them again.

Denver is still an active consideration as well. Our family had a really good conference call with the doctor in Denver and other staff on Tuesday. They seemed very knowledgeable and I was most impressed with them since they didn't seemed shocked or started at anything we threw at them as far as Dad's challenges.  They seemed to take it all in stride as things they had seen or heard before. the facility is very close to John, so that's definitely a plus.  Transport to Denver will be very expensive and we are trying to maneuver through the logistics of negotiating prices so that we will have that information to help assess options towards an ultimate decision. 

Thank you again to all that have called, emailed, texted and stopped by. We appreciate so much your continuing good thoughts and prayers. May God bless each and every one of you and your families during this holiday season. 

Much love, 

Robin
 

december 22 2010

bob is still on spontaneous support at a very low setting.  They tried to take him off yesterday but he only made it about 10 min. due to a lot of anxiety.  He is still very critical and with all the sedation he is not responding to our voice.   We are still looking for an acute care hospital since that is probably his only chance to get off the ventilator.  We are going to Fort Thomas today to visit the Cardinal Hill acute care.  We have had a conference call with the acute care in Denver yesterday and it appears to be the most advance in getting him off.   We will have to take him in a medical air plane but were every he is transported he will have go by air.  We know he can not remain at Baptist East much longer.  

Keep him in your prayers

Sue
                                

update Monday 12-20-10

Bob done well yesterday on spontaneous support he was able to stay breathing on his own for around 17hours.  He is back on this setting this morning.  As long as we can keep good nurses that don't want to sedated him to much he does good.  We are still looking for an acute care that we may be able to transport him to.  We are going to visit one today in Lexington at St Joseph and another one in northern ky with Cardinal Hill.  Hopefully, one of these will be able to provide us with the care he needs.  

Keep him in your prayers 

Sue 
 

update

Bob has done good Thursday and Friday taking breaths on his own with spontanous help from the vent.  He has been able to last about 16 hours.  He rested very good Friday night and appear to be doing ok at 7 am Saturday morning.  However while the family was out for the morning break on visitation the nurse told me he became very upset when therapy came in and she had to sedate him.   He has been put back on the vent full support.  It has not been a good day.  Appears we are still hitting road blocks and wondering why.  Hopefully tomorrow will be better.        

Sue   

monday 12-13-10 update

Today we are starting out with another doctor number 3.    However, we were very impressed by his attitude wanting to move forward.  He has ordered a blood transfusion which we have wanted for sometime.  He spoke of getting him weed off the vent which we haven't heard those words in a long time.  Bob's blood pressure has been hitting the very low mark  and then going extremely high, however with some changes today it appears it maybe stabilizing.  We are still dealing with his infection in his bowels and stomach.  His swelling in his face and hands is much better but his legs and feet still remain swollen.  He is receiving physical therapy on his arms and legs which should help with the swelling.  He is awake at times and appears to know we are there. 
Thanks for keeping Bob and the family in your prayers.

Sue

Update

This is Robin. Sorry to all that there's been few updates on Dad's status. John had to return to Colorado last weekend and so our "official poster" of information has been away from the hospital. So, while I am definitely a far second to John in this area, I'll do what I can.

The last week has been a challenging one. Dad developed a bacterial infection in his stomach, probably from all the meds he is receiving here. He has not been digesting his nutrition properly so they have had to put a tube in his mouth to his stomach to get off that which is not being taken in by his body. His blood pressure has been very high, then very low at times, although he is being given meds to try and stabilize. They did a catscan on his stomach over the weekend to try and rule out any other problems with his stomach. The surgeon indicated yesterday that he didn't see any tears or obstructions.

While he slept great portions of last week, Friday evening he woke up some and has been more awake over the weekend. He has been somewhat responsive to questions from my mom and to me at times. Overall, he is very tired of being here. Yesterday afternoon, he pulled out his feeding tube, stomach tube, his heart monitor and removed his blood pressure cuff in a matter of minutes when no one was in the room. He remains very strong in his arms and hands.

He is fluctuating between being on the ventilator full support and assisted support. Although most of the weekend he's been on full. When asked about pain, he tells the nurses he doesn't have any. But I think he still has pain in his back, based upon his facial expressions when the nurses are out of the room.

Thank you to all friends and family who have called, stopped by, sent emails, texts and letters. Without your love and support, this would be a much more difficult thing that it already is. We continue to take it day by day and see what the next one holds.

Love, Robin

update

Bob is having a lot of anxiety today so they have him back on the vent to help calm is nerves. 
Was able to stay off the vent for 12 hours yesterday which was very good.  He is still having a lot of pain in his back.  The doctor told us today his lungs are not the problem they are as good as expected however the back pain and the anxiety is the main problem so finding the right combination of medicine to control both is the goal.  Hope he can get some much needed rest today and they can put him back on oxygen control and off the vent entirely Sunday.    -- Sue 

Almost off the Vent

Over the past few days Dad made a lot of progress coming of the ventilator.  Over Wednesday and Thursday, he did pretty well, staying exclusively in the mode on the vent that only gives a small amount of air pressure to help keep his breathing passages open.  Today, they turned the ventilator off completely for most of the day.  We were told that if he continued off the vent over tonight, he'd be done with it.  Unfortunately though, this evening while we were not with him due to visitation hours being closed, he became very agitated and he was put back on the vent in pressure only mode.

 

Over this time Dad has been comfortable at times, in a lot of pain at times, feeling very anxious at times, breathing well at times, struggling to breathe at times, awake at times, and at times in a deep sleep due to sedation.  Sometimes he seems cheerful and alert and shows a sense of humor.  Other times he's in too much pain or too sedated to be himself.  It's been a real roller coaster ride.  Through all of this, he hasn't been able to talk to us due to his trach.  He can communicate by mouthing words, but it's hard.  Therefore, when he's struggling, it's hard to tell if it's due to pain in his back or somewhere else, or intense anxiety, or simply due to his inability to get enough air.

 

The setback tonight which resulted in him going back on the vent was a bummer.  To complicate matters, his primary physician in the ICU, a pulmonologist, will be gone for a month starting tomorrow.  Also, we're a little worried about how long we will be able to stay in the ICU.  We've gotten some hints that the hospital is ready to move him along to a nursing home if we're there much longer.  Yeah, nice.  Nevertheless, we're trying to stay optimistic.  Dad's a tough old man.  He's been through worse.

 

 

Off The Vent All Day

Much progress since my last post.  They started weaning dad off the vent yesterday.  Today, he's been off the vent all day (I'm not sure what time they took him off, but sometime early morning).

When I say "off" the vent, I don't mean they totally turned off or disconnected him from the vent.  So far, what they've done is put the vent in a pressure only mode, where they blow a little bit of air in his lungs to help keep his air passages open, so he can do the actual breathing himself.  In this mode, the vent does not breath for him by forcing an entire "breath" of air into his lungs.  We don't think (or we hope) it won't be hard to wean him off the pressure only mode when the time comes.

Dad still has pain in his back.  He's pretty uncomfortable, but doesn't seem to be suffering intensely.  Getting him off the vent is a big step, but dealing with his back problem in earnest hasn't really even begun yet.  Still, we found out that a physical therapist has already stopped by and helped him sit up in bed for a few minutes, and even stand up (not sure how long, but sure it wasn't much).

Dad is in pretty good spirits all things considered.  He wants Mom by his side at all times, and the hospital has been letting her stay with him even when visitation hours aren't in effect.  Dad's been showing his sense of humor, and has been awake most of the time.

This is all encouraging and welcome news, although we still have a lot to go through before he's back home and moving about in his electric wheelchair.  We hazard to guess that that he could be home in a couple of weeks.  Hopefully we're not being wildly unrealistic.

Mixed Bag

Dad was awake a lot today. It's clear that his back pain is not a secondary issue, but rather the issue. He needs meds to handle it. Unfortunately taking those meds is not conducive to getting him off the vent. It's a catch 22. We're hoping to find a way. We don't feel all the pain management options have been explored. Other than finding another option though, he's probably just going to have to dig deep. Currently his breathing and vitals are generally good as long as he's getting painkillers. We'll see what tomorrow brings.

Awake

I saw Dad about a half hour ago. He was awake, his breathing was good, and his heart rate was good. He recognized me and mom and Steven and was answering our questions by nodding. We got a couple of smiles out of him.

He's still groggy and they are still bringing his sedatives and painkillers down. Also at some point today they're supposed to start weaning him off the vent.

We still have a long way to go but we're off to an encouraging start this morning.

Progress, More Sedation, Big Day Tomorrow

When I got to the hospital this morning, Dad was awake and struggling to breathe.  He had just gotten some things taken care of by the nurses though, which had left him short of breath.  Before long he settled down to a good heart rate and respiration.  Then he fell asleep.  Earlier, he had responded to some commands from the nurse and Steven by squeezing their hands and blinking.  The rest of the day, though, Dad was sedated and unconscious.

 

Dr. Xenopolous paid a visit and was not pleased with the progress that had been made in getting Dad off of the sedatives and the vent.  The nurse later told us that the doctors ordered Dad's sedatives to be cut by 35% per cent by tomorrow, and that tomorrow they will try to take him off the vent.  I don't think anyone knows how long Dad will stay off the vent tomorrow, but they're at least going to give it a try to see where things stand.

Some Good News

Just got this from Steven at the hospital...

 

Doing better. Woke up and followed instructions vital signs tolerated it and are currently stable . His arms and legs are warmer his face is better color and he's less swollen . Plan to keep pain and sedation meds alone and let him rest. Let others know, I type with one slow finger. Steven. Moms ok too.

Sedated Again

Last night when I left the hospital Dad was waking up periodically and squeezing the nurse's hand when asked.  After I left, though, thing went downhill.  Dad started struggling to breathe, and his heart rate and blood pressure went way up.  This continued for about an hour and a half with Dad gasping for air the entire time.  The nurse then gave him something to sedate him.  We're not sure if it was anti anxiety medication, or more of the sedative that they had been tapering.  In any event, since then, Dad has been unconscious.

 

Dad's heart doctor, Dr. Xenopolous came by tonight to check on Dad.  When he left he stopped by the waiting room to talk to us.  He told us that Dad's heart is fine.  He told us that Dad's problem is having trapped air in his lungs.  My interpretation is that with such limited lung capacity, Dad's having difficulty getting air out of his lungs.  Dr. X wasn't sure why this happens when Dad becomes conscious, although he seemed to feel that it could be due to anxiety.  Additionally, Dr. X told us that he doesn't have in his head what the strategy is to get dad conscious and get him off the vent.  He made a note to talk to the pulmonologist that's in charge of Dad, Dr. Haller, early next week.  Mom's hoping to talk to Dr. Haller about it tomorrow.

waking up some

Dad is still having his breathing assisted by the ventilator.  For most of the day he was still sedated and unconscious, as he has been since before he arrived at Baptist East on Tuesday, but they are trying to reduce his sedation and wake him up.  Last night, they did this by completely stopping the sedative, but Dad would get agitated and have tremors when he became conscious.  Sounds like they tried this approach multiple times.  Then today, we had a excellent nurse who began tapering the sedative.  This evening, dad began twitching and opening his eyes.  At about 8 PM, while we were not in his room, the nurse got dad to respond to a couple of commands, such as squeezing his hand.  Throughout the day, Dad didn't respond negatively to being woken up gradually.  The nurse said earlier this evening that they had cut his sedattive to less than half what it had been.  I met his nurse for tonight and I thought she seemed like she's on the ball and well infomed about what's going on.

Dad's vitals are all looking good according to the nurse. but he is still pretty swollen in his hands and legs.  They're giving him Lasix to try to reduce the swelling.  Also since my last post, they did xrays on Dad's back and confirmed that he has a compressed disk (compressed vertebrae?), and that he has a couple of small fractures in his spine, I think due to osteoporosis.  The neurologist that read his xrays indicated on Dad's chart that Dad isn't a candidate for surgery.  To my knowledge, the only treatment option they see is pain killers.  I hope we'll be getting other opinions on this.

It's about 10:30 ET and we just heard from Robin at the hospital.  He's waking up more and doing ok so far.  Hopefully the trend will continue.

Holding Steady Kindof

I'm at the hospital but haven't seen Dad yet today.  Dad has been sedated since my last post.  He is breathing ok and resting, but he's sedated and still getting help from the ventilator, so who knows if his condition has really improved or worsened.  The staff did some tests... they did an xray on his head and back.  My understanding is the head xray didn't show anything bad.  The back xray is going to be evaluated by a specialist.  They feel it's likely that his back pain is due to a compressed disk.  They are thinking about treating it with an experimental technique, but if they can't do that, they're not sure what they can do.  Another thing worth mentioning is that Dad's heart rate has gone down into the 40's since last night.  I don't think they've offered an explanation of the cause or the consequences.  Like many things that have happened to Dad in the ICU this time and several years ago, it seems like we're left to come up with our own theories.

Dad's in room 381 in the ICU

We're at baptist east. Transfer went smoothly.

Moving Dad to Baptist East Soon

Robin just told me that the ambulance is on its way to take Dad to Baptist East.

Here's a link to the hospital: http://www.baptisteast.com/Patients+%26+visitors


Here's a link to the location on google maps:

http://maps.google.com/maps?f=q&source=s_q&hl=en&q=Baptist+Hospital-East,&sll=38.237759,-85.638986&sspn=0.01323,0.033023&ie=UTF8&rq=1&ev=zi&radius=1.08&split=1&hq=Baptist+Hospital-East,&hnear=&ll=38.237978,-85.638986&spn=0.012809,0.033023&z=16

The Latest

Dad had a pretty good night according to Amy and Mom, who were in his room overnight.  This morning, though, he started shaking uncontrollably.  When I got to the hospital, his breathing was more rapid than last night and he was shifting around in bed more.  He was sedated but semi awake.  He wasn't communicating.  He wasn't shaking anymore as of when I got here.

 

We are moving Dad to Baptist East in Louisville.  Dad's heart doctor -- and I will make an attempt to spell his name though I don't expect this to be remotely accurate -- Dr. Xenopolous, is making the arrangements at Baptist East.  We're now in a holding pattern until a room is available at Baptist East.

First Post

I just got home from spending the day at the hospital.  Dad is was sleeping comfortably when I left, BUT he's on a lot of medication for pain and sleeping, and he's hooked up to a ventilator.  He did well most of the day, but early this evening he starting to have difficulty breathing, and the doctor in charge decided to assist his breathing with the ventilator.  Currently he's able to breathe on his own whenever he can and wants to.  But the vent pushes air into him when he doesn't breathe enough.  We've been told he can come off the vent tomorrow if he's doing well.  Also tomorrow we're expecting to make decisions about how to feed him.  My understanding is we'll need to have a tube go directly into his stomach.  Also, we considered moving him to Baptist East hospital in Louisville when things went downhill this evening, but for now we've decided to stay at the hospital in Frankfort.  The main reason is that we can be in the room with him 24/7 even though he's in the ICU.  Also we think most of the staff are doing a good job there.

Summary: he's currently not suffering, but by no means out of the woods.  Besides getting him back on track with his breathing, eventually we have to figure out why he has so much pain in his back and how (if possible) to fix whatever's wrong.

John