April 20, 2011 (Meeting with Jim)

I called Jim for Dad's periodical inform-the-family meeting today.  Here are some notes:

Dad's weight is now 221.  Jim said at this same time last year he was at 175.  That is 46 pounds gained in one year...  I asked Jim if they could stop sending the "treat man" around each night, or to restrict his diet at mealtimes, but Jim said that by law, they cannot do that unless the resident themselves requests it.  I don't understand this, since the care center is in charge of taking care of his health, and excessive weight gain like that is certainly not healthy.

Dad has been dropped at least 4 times by hospital staff in the month of April alone!  This is shocking.  Apparently they are supposed to call the family every time something like this occurs, but they haven't been calling anyone.  Dad has mentioned being dropped, but he downplays it and I didn't realize it had happened so often recently.  One of the notations on his chart mentioned a large bump and laceration to his head, but Dad said it didn't hurt and said he didn't want to be taken to the hospital.  Jim will make sure that we are called and informed of anything else like this in the future.   Part of the reason for these drops is that Dad weighs so much now that he is much harder to transition from bed to chair and back.  They have been requiring that staff members use the sling to move him, but some staff members have not done that or were not notified or something.

The number of prescriptions they have Dad on is astounding.  It's in the 20s.  I am having Jim mail me a copy of all of them.

I also asked Jim to have the doctor check Dad's lungs.  He is still wheezing.  They did a chest x-ray months ago and nobody was ever notified of the results of it.  Bennett Navarro is supposed to visit Dad tomorrow.

Overall, Dad seems pretty happy and adjusted to his life in the care center.

Back to the Care Center

Dad was moved back to the care center on Thursday afternoon, Dec 30.  He spent 2 days in the intermediate care section of the hospital and another day in a lower care room before the hospital sent him back.

He is very much exhibiting symptoms of stroke almost like he did with the first stroke over a year ago.  The doctors tell us that anything that causes his body to be run-down or tired will exacerbate those symptoms.  He is still very slow to respond to questions, seems disinterested in conversation or normal food (though he's still very interested in anything chocolate-covered!!).  His neck is stiff and is visibly bruised on the outside from the intubation.  Sitting in the wheelchair, he is leaning to the right badly, with his neck extended.  When asked to straighten up, he doesn't right himself.  I am not sure if this is because of pain, laziness/tiredness, or because he doesn't realize he's leaning.  His sense of humor is still in there, although rarely exhibited these days.

Day 2 in ICU

MRI results don't show any evidence of another stroke.  The nurse said this could be due to the TPA doing its job well enough that the stroke might have been "erased" from view on the MRI.  Blood enzyme tests show that heart damage might have occurred.  Dad is still on a respirator and still sedated because when they pull him off the sedation, his heart rate and blood pressure go up.  When they have decreased his sedative, he opens his eyes and can somewhat make eye contact.  He moves his right arm (though it is tied down) and seems to also be voluntarily moving his left arm also.   He has redness in his arms and face and we are not sure what is causing that--possibly the drug they're using to keep his blood pressure down.

There is no plan for the doctors to do anything but watch Dad today.  A TEE might be performed tomorrow.  That is a procedure where they run a camera down his esophagus to look at his heart.   That would give a definitive opinion as to whether a heart attack or any damage to the heart has occurred.

Another Stroke -- Left Side of Brain

We got a call at 8:00 am today saying the ambulance was taking Dad to the hospital.  He was fine this morning,  had a shower and was at breakfast when he became non-responsive.  Jan arrived first at the hospital, then Ted, then myself.

His blood pressure was insanely high, he didn't know who was in the room and did not respond to Jan and Ted calling his name.  He was flailing a bit, grasping at his face.  When the nurse tried to put a breathing tube down his nose, they apparently cut him or something and he began to bleed profusely.  They have him on blood thinners, so he is very prone to bleed.  Apparently they had him lying down while the bleeding was going on and the blood ran down into his lungs and stomach.   As they were trying to stabilize him, they had to put a tube down into his lungs to remove the blood.  I am told this very much increases his odds of getting pneumonia.  When moving him from the stretcher to the bed in the ICU, he apparently vomited a very large amount of blood also.

They gave him a dosage of TPA (not sure if I got that acronym right....but it's the blockage fighting drug) around 11:30 am.  They were not able to get a full dose in because he began to bleed more.  We watched them do an ultrasound on his heart, to try to detect if foreign debris had gone through a hole in his heart without first passing through the lungs.  Normally blood is filtered in the lungs, but if the blood happens to go from one side to the other through a hole in the heart, the lungs do not remove the debris and it's possible something could go to the brain that way.

It is 5:00 now and Dad is sedated, with breathing tube and suction tube to pull blood from his lungs.  He has been this way since about 11:00 am today.  The doctors confirmed with a CT scan that a stroke has occurred on the left side of his brain.  We won't know for sure how badly it affects him until they remove the tubes and stop sedating him.  He opens his eyes partly for a second here and there.  There is a lot of shivering of his left (paralyzed) side.  He moves his right arm a bit also.  So far, he has not acknowledged my presence.  They will keep him sedated until tomorrow at the earliest, so that he doesn't try to pull out the tubes.  The nurse says that he is in stable, but guarded, condition.  I take that to mean that he could go downhill at any moment, so I am staying here as long as is practical.  He does look peaceful as he sleeps but the tubes look pretty brutal when you think about it.

October 31, 2010

Dad has had a few weird trips to the ER in the past few months.

In the month of June, all four of us were over taking Dad to lunch.  He was very lethargic and leaning to one side in his wheelchair.  He said he'd been vomiting earlier that day.  We started to wheel him down the street to Subway when he said he thought he was going to vomit and wanted to be taken back to the care center.  So we turned back and decided to bring lunch to him.  He ate, but was acting really strangely and when one of us mentioned his speech seemed slurred, I figured those were all signs of a stroke and decided we might need to call a nurse and see what they thought.  So that ended up in a decision to send him to the ER to be evaluated for a possible stroke.  After several hours in the ER and a CT scan, the doctors said there was nothing wrong with him and no signs of a new stroke showing in the CT scan results.  So we had the care center transport come pick him up and he went back...

On October 4th at 5:07 AM the care center called me and said they were sending Dad in to the ER again.  Man, I hate those calls.  I had just been to visit him the night before and he did seem very tired and was slouching to the side a lot and I could barely understand him.  But, oddly enough, this time I didn't think much of it in the way of it being another stroke.  So I just gave him a piece of cake and attempted to talk to him as he fed himself, but my understanding of the conversation was hit and miss.  I went home thinking Dad was either very very tired or was losing his health slowly but surely.  When I got the call, I was not surprised, but mad at myself for not sending him in the night before.  Same as last time though, the CT scan showed no new signs of stroke.  Blood work was all normal except he had a slight sign of a UTI infection.  The doctor spoke to us about admitting him to the hospital to watch him, but in light of what had happened the previous ER fiasco, I opted to just send him back to the care center.

A couple weeks after that, they called and said they were wanting to send him in to the ER again, but I told them to hold off and just have the doctor come examine him.  It was my thought then that it could be the meds he was on.  They had recently added or increased the dosage of Cymbalta (an anti-depression medicine).  So I asked the nurse to tell the doctor he didn't need any meds for depression or for sleep. 

In subsequent visits, he has seemed more normal and lively, so I think we were right about the meds being the cause. One thing that is not good is the fact that Dad is nearly 200 pounds.  He was 163 when we admitted him to the care center here in Utah.  We have been feeding him way too many chocolate covered peanuts from the neighboring Sunflower Market that Dad has started calling the "Mayflower" for some reason... :)

We have a meeting with the care center staff on November 3rd, but I am sure it will be uneventful.  Dad sees no improvement nor decline.    

June 1, 2010 (back in PT)

I just spoke with Jeff (Dad's PT specialist) who said that despite Sam's misgivings (I had talked to Sam last week about his thoughts on Dad's prognosis and they were pretty dismal), Dad had performed quite a bit better in his transfer from bed to wheelchair in his evaluation I'd prompted them to do last week.  Jeff said that Dad was able to put a lot more weight on his good leg than he'd done before and that Dad took more initiative in getting himself up and out of the bed than he'd seen him do before.

As a result of the positive evaluation, Jeff is filing papers to get Dad back into PT for a while at least.  Since he is now covered by Medicare Part B, I am not quite sure the duration of this PT schedule, but the PT sessions will be 5 days a week until Med B cuts him off.  If we are still seeing progress, Med B might still pay for some or all of the PT, and even if it does not, we would pay out of pocket if Dad has a chance to get walking again.  It is well worth the money!!

I knew it was a bit exaggerated when Dad self-described last week's session to me as "I got up from my bed and walked to the wheelchair" but I am glad to see that Jeff and Sam were able to see some measurable improvement.  Either Dad has decided he really wants to get home and will push through the pain, or all that candy has done something as far as beefing up that good leg! :)

May 12, 2010 (Meeting with ORN staff)

At our meeting with the care center's staff, which Dad attending along with Janice, Brad, and myself, we discussed Dad's state.  Overall, not much has changed in months, except Dad's weight, which had sky rocketed since the last time we'd checked.  He'd gained 7% of his body weight!!!  I have no doubt that is because of all the visitors who've been bringing him candy, and because of all the lunches out we take him to.  Dad's sweet tooth is insatiable and he does not seem to have the ability to recognize when he is full.  If you put a bag full of chocolate in front of him, he will eat it until it's gone, no matter how huge the bag is! 

During the meeting, we discussed the following:  We mentioned that it seemed he'd been a bit more upbeat lately, possibly due to his prescriptions changing.  We asked them to look into the fact that the door to the outside of his room seems to  never be locked and that anyone could possibly come in there.  The door is also quite breezy and Dad says it often makes him cold.  The usage of the braces we purchased for him seems to have done a bit of good in keeping his left hand outstretched instead of curled, and we mentioned that we've noticed they are not very conscientious about making sure the braces are put on every day.  We also asked that Dad be re-evaluated for physical therapy and asked that the PT staff charge it to Medicare and see if they would pick up the bill for a 2-week stint.  If Medicare won't pay, then we said to start doing PT two times per week and we would pay out of pocket for it.  Jim (the social worker we meet with) said that he would talk to PT and call me back that same day.  Dad asked if he'd been reported for any "inappropriate behaviors" and we (and Dad especially) were very glad to hear he has not been!  :)

After the meeting, we wheeled Dad out to lunch and visited for a while.  It is so nice to FINALLY have some spring/summer weather here!