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.