Monday, December 31, 2012

Day 10 - December 31, 2012

Today Aubrey is writing.

Today has been a day of ups and downs. We spent the day sitting with dad trying to keep him calm and rested. Our goal has not been to get him to follow commands but to get him calm enough to reduce his sedation. He was very very active today. Nathan spent a large part of the day back with dad simply forcing him to lay down. Dad would sit up, kick, make fists, thrash around, roll around. He has been the most active I have seen him. At one point when I was in the room with dad alone, he curled up sideways in the bed and got his head stuck between the guard rales. I couldn't get him unstuck so I had to have nurses come in. It ended up taking 4 nurses to restrain dad because he is so strong.

For most of the day dad's eyes were open, he was still not tracking but we saw a lot of eye movement. He would move his eyes toward voices in the room, but again he would not focus. We noticed some of dad's fine motor skills starting to kick in. His toes would wiggle, his whole hand will clench, his pointer finger moved back and forth across the sheet, his thumb move back and forth...all small things that give up hope and bring encouragement!

This evening just after I turned dad over to the nurses, he started bleed. Earlier in the evening dad ripped two of the stitches out that keep the trach in place. He moved around so much he re-opened the wound. Dad is on blood thinners which meant that the nurses could not get dad's trach to stop bleeding. They sedated dad, stopped his blood thinner and called in his doctor from Ann Arbor. A nurse had to sit with dad and keep pressure around the trach to keep dad from bleeding too much. They did a great job keeping my dad safe. By the time the doctor drove in from Ann Arbor dad's blood had finally started to clot.

The plan is to keep dad sedated until he is healed. He will be in the CCU for the next day at least. He may be sedated longer. It all depends on him and how quickly he heals.

Today I Run East

I came across this poem a few years ago in a different time and different place and it really stuck with me.  I did a search for it again today, and again, love its message as it hits home so much more.  Today, we move onto the next step of our journey as Dad moves from the hospital over to CareLink.  We will update with more details of our day later, but in the meantime, I hope this poem encourages you as it has me.

Today I Run East!
(A promise of HOPE)
By Barbara D. MacAdam

When I got the news, my world stood still.
Like a breath in the twilight, tightly held through sheer will.
 So I’ve stayed in this dream state, suspended in time,
where the past has not left and the future’s not mine.

Fear swells within me, and try as I might,
I can’t stay where I am. I know I must fight.
With a gasp my lungs burn, as I climb to my feet,
but which way should I run—toward the West or toward the East?

The West holds my dreams & joys of my past.
They are trapped in the sunset—how long would I last?
I’d have to keep running just to stay in the light,
but I’m growing so weary. I need help with this fight!

I rest my eyes briefly, lying prostrate due west,
mourning precious time spent on this futile quest.
The dark at my back, creeping forth from the East,
holds the fear of the future like a stalking beast.

My heart has grown weary. My mind cannot cope.
 Shattered dreams slip through fingers—I’m losing all hope.
Then a small voice recanted a promise I’d heard.
 “Come to Me all ye weary,” you can trust in My word.

It brought back a stirring of rekindled faith.
 I was flooded with HOPE and began to shake.
What if I stood and faced down this beast—
my fear of the unknown, that loomed in the East?

It then wouldn’t matter if I froze or I ran,
for God’s earth has kept spinning since all time began.
So I turned toward the darkness, no longer alone,
and stepped in with arms reaching, as my soul searched for home.

And though the sun set behind me.
I felt inner peace,
for SUNRISE will soon meet me if
TODAY I RUN EAST!

Sunday, December 30, 2012

Day 9 - December 30, 2012

Today was the first day on the new set of medications.  They kept him on a low/moderate level of sedation and he stayed in a half-wake half-sleep state.  He would open his eyes some, but did not really seem to focus on us while talking.  He stayed relatively calm most of the time.  He moved in the bed just a little, trying to slide himself up, sit up a bit, or move his legs, but not nearly the level of movement and restlessness that we saw a few days ago.  If that had been the case, I am sure the doctor would have increased his sedative because he is still worried about the wound from his tracheostomy.  There was also one time that his heart rate and blood pressure increased and he became agitated so they gave him a dose of morphine to help him relax.  He did not need the respirator from 8:30am through about 3pm.  He is doing well breathing on his own.  An afternoon chest x-ray showed improvement in the pneumonia that they had spotted the other day which is a good thing.

So, I don't really know that we learned anything new today.  Hopefully, with another day or two, we can see if he can stay calm on a lower dose of sedative and he can wake up more calmly and move forward.  I can only imagine how scary and confusing it would be to wake up in an unknown place, feeling achy and terrible, hooked up to machines, restrained so that you are not pulling out important IV and respirator lines.  I just pray that we can get to a safe, longer term awake where he is less stressed.

UPDATE:  So based on my evening conversation with Aubrey, it sounds like Dad is getting more active as the night goes on.  He just lifted one of his legs high into the air and Uncle Dave tried to push it back down.  Dad fought him on it and kept tugging it up and away.  He is also squeezing my Uncle Tim's hand with his own whole hand and a good grip.  Not necessarily on command (as in "squeeze my hand if you hear me") but we are hoping more than just reflex.

Saturday, December 29, 2012

Day 8 - December 29, 2012

Today we were so hopeful and expecting an exciting day!  We have been waiting (I wish I could say waiting patiently but that might not be true) the past few days in hopes of bringing down Dad's sedation to see where he is at and find our baseline.  If we can know where his mind is, separate from any effects of sedation or other major pain medications, then we will know where we start and move forward.  After the tracheostomy, we understood that he needed to be very still for 24 hours.  But today, our 24 hours were going to be over and we should be able to wake him up. 

We were all feeling optimistic, but when we get to the hospital, Dad was more sedated than ever before (50 propofal and 125 fentanyl) and was completely and totally out...snoring...back on the vent because he was so sedated that his respiration rate fell.  There were more than a few of us fired up!  After a few minutes of family pow-wow and a talk with the doctor, we were back in agreement that at the 24 hour mark we would get to reduce or remove the sedation and wake him up.

At around 3pm, they cut back on his sedation and he began to wake.  As he continued to gain consciousness, he became very agitated.  He tried to sit up in the bed.  He pumped his legs in the air.  His heart rate began to increase.  His blood pressure began to increase.  Overall, he got to a point where he was just too agitated and his stats got bad and we needed to get him relaxed.  After about 1.5 hours of trying to get him to calm down, he went back onto the sedation.

Afterwards, we all just felt so defeated.  We had anticipated a much different result.  We had a big family meeting with the doctor involved and thankfully, he helped calm us and laid out his plan for the next thing to try.  He is starting dad on some different medications in an effort to reduce his anxiety so that we can minimize sedation and have him in more of an awake state.  He is now on Ativan and Zyprexa to help control his agitation.  He also switched his sedation from Propofal, which would put him completely under, to Versed in an effort to keep him somewhat more awake.  In addition, there are certain side-effects to long-term use of Propofal which probably also played a role in changing over to the Versed.

So, all in all, a pretty discouraging day.  We are all having a difficult time with our patience.  We just want to see forward movement, and when I really stop to think about it, it is there in some ways....its just such slow progress.

Friday, December 28, 2012

Day 7 - December 28, 2012

Throughout the day today, they have kept Dad pretty calm and sedated.  Today was the day of his scheduled Tracheostomy and they will also place a feeding tube line into his stomach.  I think we were all hopeful that with the Trach in place, and the tubes for the vent and feeding tube out of his mouth, he will be more comfortable and less agitated.   Up to this point, they have caused him a lot of discomfort and he has been gagging whenever he feels them.  He hasn't purposefully moved up to grab them yet, but I think if he could he would.  Both of these procedures are in an effort to get Dad more comfortable so that he can wake up with less agitation and focus on healing his mind.  I keep reminding myself that the go in easily, but they can also come out easily as he makes progress towards recovery.  I am hoping he needs these for only a short time as support.

His surgery was at 3pm and lasted for about an hour.  After the surgery, he needs to be completely and totally still for 24 hours.  They doctor has him on a healthy dose of propofal and we sat with him quietly, but now is just a time to wait.  We are very anxious and excited to try to wake him up again tomorrow. 

Oh, and we have officially become the family that has taken over the waiting room.  Generally, Mom, Tom and Amber come in first thing in the morning with a suitcase of snacks.  Then there has consistently been Uncle Tim, Aunt Deb, Uncle Dave, Aunt Judy, Aunt Denise, Aubrey, Nate and I.  Grandma McEldowney, Aunt Linda and Uncle Dick come up each day.  Whitney, Kyle and Codi have been here almost constantly.  There have also been various other family and lots and lots of friends that stop in and out throughout the day.  Our core group comes daily with our crockpots full of dinner, our pillows and blankets for naps, our books and laptops and tablets and phones and device chargers and have staked claim to one half of the waiting room. 

Thursday, December 27, 2012

Day 6 - December 27, 2012

Today has been a discouraging day. Dad has been pretty much asleep all day long with just a few moments of open eyes. Overnight, we had a fabulous nurse, Julie who really cared for Dad. She played music to soothe him, talked with him to keep him calm and tried to keep his sedative to a
minimum so he could get the best results possible for his EEG.

This morning he had an EEG. It told us that yes, he has brain activity, but that it is very slow right now. He hasn't had any seizures that they can tell or strokes that they can tell. During the neurologist's exam, I sat in and got to watch.  It was so frustrating. He was so completely snowed under with medication.  The nurse was supposed to take it away an hour before the neurologist came but instead only turned it off 20 minutes before.  He would not open his eyes. He would not move his limbs.  He was completely unresponsive to anything we said or did.   He was still sedated and asleep.  He did none of the things that he was doing yesterday.

After exam, we had a family meeting with the neurologist and doctor to hear their report.  Without surprise, the neurologist reported that the clinical exam was consistent with the brain wave speed he was seeing on the EEG.  Then we had a discussion with his doctor.  He tried to get us thinking in a new direction.  We are getting past the point of expecting that he is just going to wake up and be back to normal Clarence without more effort.  We are trying to wrap our arms around the fact that our Plan A is not the most likely outcome.  We move on towards Plan B, which is to prepare for a longer term rehabilitation.  He suggested that we consider a surgery to perform a Tracheostomy and place a feeding tube into his stomach.  This will allow him to be more comfortable and not have the respirator tube and feeding tube in his mouth and down his throat.  This has been very uncomfortable for him these past few days and causes him to gag and cough.  These will also help to transition him over to a separate facility that will care for him and hopefully help work with him to get from his current state to a point where he can participate in rehabilitation therapies. 

The rest of the day, we all visit with my dad and try to keep him calm.  He is a lot of work for the nurses.  He moves and moves and moves in his bed so much and is a really strong guy.  He has been moving his legs through the air almost as if he is on an invisible bicycle, or like he is performing stomach crunches by bringing his knees up to his chest.  As a result of this moving, he scoots himself down in the bed and then his back is where the bed bends which is uncomfortable.  Then he will try to sit himself up more, or slide to one side or another side.  In addition, his legs are so long that his feet will hang off the end of the bed.  Plus when he slides down in the bed, even with his hands restrained, he is closer to his vent and feeding tube and could accidentally pull those out.  Because of all of this, the doctors and nurses want him sedated so that he is not a danger to himself, but again as I said above, when we sedate him, we cannot be working with him on building the connections that he needs in his brain to heal and put things into place. 
So we continue to wait and see and hope that the surgery tomorrow will allow him to be awake and less agitated.

Wednesday, December 26, 2012

Day 5 - December 26, 2012

Today was such an encouraging day!  It really makes me so much more confident that Dad is going to come back to us! 

At the start of the day, they removed a sheath catheter that had been placed in his leg.  This had been there ever since the day one heart catheter.  Because they took that out, they kept him heavily sedated for the morning and half of the afternoon so that the opening could clot and heal.

Later in the afternoon/evening, they reduced his sedation and we were so happy with the progress we saw.  When we would talk with him, he really seemed to turn his face towards ours and we actually saw some focus to his eyes.  We hadn't thought of it before for Aunt Judy (or maybe Aunt Deb?) mentioned that it might help to put his glasses on for him.  We really hadn't thought about that before (silly I know) and it made a difference.  We saw him start moving his eyes to track us rather than just moving his head from side to side.  At one point, Codi walked into the room and he turned his head in reaction to her walking in.  Later in the evening, as I was talking with him I would test him by walking to the end of the bed and he would track me with his eyes back and forth just a bit. 

Again, the doctor's goals are to see Dad perform a "purposeful" movement such as a thumbs up or a definitive wiggle of his toes.  Something that would not be a fluke or a movement that he would just do as a reflex.  We have tried to get him to do something of this sort, but without success....however, it has not been that long and I am encouraged with our progress at this point.  Today he was more awake and aware than yesterday so we are on the right path.

Also, Dad is still hooked up to the respirator, but his settings are very low and he has consistently been breathing over the machine.  They take a daily chest x-ray and have found a spot of pneumonia in the lower lobe of one of his lungs, but do not seem overly concerned.  They are running him an antibiotic to clear that up.

Tuesday, December 25, 2012

Day 4 - Christmas Day

Merry Christmas! 

So this is not exactly how we had envisioned sharing our Christmas together, but we were all together as one big family all the same.  Today we all celebrated Christmas in the waiting room of the hospital critical care unit.  We brought in a folding table, crockpots with ham, mashed potatoes, green beans, sloppy joes, and various other sides and sweets including some great pies.  We probably had more people there today than would have been out to the house for a normal Christmas. 

And we saw more encouraging signs from Dad.  He is more awake today than yesterday.  He seems to turn his head towards us when we talk with him.  He doesn't seem to focus all that well at this point.  The doctors would like to see him follow some simple yet purposeful commands like "give a thumbs up".  This would be anything that he wouldn't normally just do as a reflex and could clearly be attributed to him understanding and controlling his response.

When the nurses are working to stimulate him, he will call his name really loud and he will generally open his eyes and seem to look at them.  They run a prickly wheel type tool up the bottom of his foot and he now consistently draws his foot back.  If the doctor pinches his toe, he will pull his foot back.  His pupils react to the flash light.  He has healthy gag and couch reflexes.  When the doctor pinches dad's finger really hard, he will contort his face and grimace, but will not pull his hand back the same as he does his foot for some whatever reason. 

He has not needed a lot of support from the respirator, but they will not even consider taking it out until he is ready to support his airway.  And they don't feel comfortable that he will support his airway unless he can follow simple commands.  By "support his airway" they mean that he can swallow and/or cough on command.  Otherwise, he may not swallow his saliva as we normally would and could aspirate it into his lungs.  Also, if he were to throw up, he would also run the same risk. This would be very dangerous over a period of time and lead to pneumonia and/or infections. 

So in the meantime, we are really hopefully that the progress he has made so far will lead to him following our simple commands, showing that he does in fact understand and can respond appropriately when asked.  At this point, it feels like we are really close. 

Monday, December 24, 2012

Day 3 - December 24, 2012

The nurses began to reheat Dad overnight and by noon today he had reached normal temperature.  The monitoring that takes place during the rewarming process is very important.  I kind of think of this whole cooling process as a car engine that has been made to slowly idle, and now that we are rewarming, we are hitting the accelerator.  His heart has been stable at the slower rate during cooling, but they need to monitor the reaction of his heart as he is warmed.  His electrolytes have been balanced, but they need to closely monitor for changes as he is warmed.  He hasn't shown any seizure activity so far, but they need to closely monitor for seizures as he is warmed.  Based on all accounts, there have been no major issues during the rewarming process and for that we are very thankful.

At about noon, Dr. M turned off his sedative (propofal) and we all sat anxiously hoping and praying that he would wake up.  At about 4:30pm, we saw our first promising signs.  He was coughing/gagging on the ventilator tube and half opened his eyes. Uncle Tim and I were back with him at the time and became very animated, encouraging him to open his eyes and look at us.   We got him to begin turning his head towards our voices and he began moving his arms slightly more than before. Between 4:30 and 6:30 there were several times when people talking loudly at Dad could
get his attention and get him to open his eyes slightly. His biggest response at that point was as a result of singing the East Jackson High School fight song.  My aunts sang to him and got him opening his eyes and turning his head quite a bit. 

Around 8:30, my sister Aubrey pass along that dad was becoming more and more awake. He began keeping his eyes open for a longer period of time and moving his arms and legs as if to try to get more comfortable. It's pretty clear that he does not like the tube down his throat for the ventilator and
that in general he just is trying to find a comfortable position. I came back and sat with my dad from 11 o'clock till 1:00 AM on Christmas Day.  There were two or three time periods where he became agitated and would open his eyes and somewhat track the sound of my voice. He seems to be getting better it's just taking baby steps and being patient.

Sunday, December 23, 2012

Day 2 - December 23, 2012

Dad underwent the hypothermic therapy all day today.  His 24 hours at 33 degrees Celsius was completed at 10:30pm and the nurses began warming him.  He was fully asleep in a medically induced coma throughout the treatment.  His heart was more stable throughout the day as a result of the medications, and only occasionally did he have irregular beats on the monitor.

Uncle Tim, Aunt Deb and their family had left on Friday night to spend the Christmas holiday in Massachusetts.  They arrived there at about 7am on Saturday morning (12/22/2012) and only hours afterwards received the call that Dad had collapsed and was being taken to the hospital.  That evening, my Uncle Tim, Aunt Deb, Uncle Dave, and Aunt Judy booked flights back to Michigan, taking off this morning and arriving at the hospital at about 1:00pm.  Poor Whit, Kyle and Codi drove back to Michigan, making their total drive time 26 hours out of the 48 hours of weekend.  Based on conversations with them, we understand they packed a lot of vacation into those 12 hours.

As soon as they arrived at the hospital, the entire family met with the doctors for an update. By entire family, I really mean EVERYONE....Mom, Chantel, Paul, Aubrey, Nate, Tom, Amber, Uncle Tim, Aunt Deb, Aunt Judy, Uncle Dave, Aunt Linda, Uncle Dick, Aunt Denise, Grandma....Everyone. The doctor did a very nice job of summarizing the event as well as the tests and procedures performed up through mid-afternoon today.  However, the real message that we are just going to have to wait and see how he reacts when they reheat him and attempt to wake him tomorrow.

Saturday, December 22, 2012

Cardiac Arrest - December 22, 2012

We have started this blog to document the daily progress of my dad, Clarence McEldowney's, recovery from cardiac arrest and anoxic brain injury.

This journey started on December 22, 2012.  Saturday morning, the entire family had gotten together at mom and dad's house to help him carry his new pool table into the basement.  He was so excited.  He had just converted the basement bedroom/great room, into a game room with a nice bar, sitting area, and now a new pool table.  He really envisioned this new space being a fun place where the family, including his grandkids, would have fun getting together to hang out.  The guys got the pool table moved in and set up easily with little real lifting necessary....most of the moving could be described as a controlled slide.  With the table set up, the guys played a few games of pool, then Dad and Nate took off to run a few errands. 

The errands led them out towards our new farm property, where some friends of the family were dismantling an old barn to recycle some barn wood for other house projects.  There were several people out there and Dad spent some time visiting and gathering the wood.   At about 1:00pm, he and another person, Doug Cure, moved the pick up a piece of wood and as Dad bent forward, he collapsed.  At first, Doug thought he had just fallen, but quickly realized that it was something much more serious.  He screamed for help and very quickly, Tom Cure (Doug's dad) began performing CPR while the others called an ambulance.  The Pulaski Rescue arrived quickly, within 5-10 minutes and began working on him.  The ambulance arrived only minutes later.  We have been told that Dad was shocked with the defibrillator 4 times between when the Rescue arrived and when he made it to the hospital 30 minutes later (about 40 minutes total from time of event).

When he arrived at the hospital, he was hooked to a vent and his heart was stablized.  He immediately went for a CT to check his brain of bleeds. There were none. Then he was taken to the Cath Lab to check for blockages around his heart.   There were none.  They did identify damage to the metrial valve of his heart, but based upon a past heart cath in 2004, doctors had already identified a valve prolapse.  Likely, the damage to this valve was unrelated to his cardiac arrest.  So ultimately, there is no explanation for his sudden cardiac arrest.

The doctors immediately began cooling Dad as a part of a hypothermic protocol.  After stablizing his heart, all of the attention began turning towards saving his brain.  Although, all of the right steps were taken between the CPR, and other rescue efforts, it is unknown how much or little oxygen he had to his brain and for what length of time.  The hypothermic protocol is designed to slow his body and brain, kind of like hybernation, where it requires very little oxygen, and reduces the amount of secondary injury that can result after the lack of oxygen. 

So that is where we were left on day one.  Dad was transferred to the Critical Care Unit where he continued to be cooled to his lowest temperature of 33 degrees Celsius, which he reached at about 10:30pm.