Tuesday, March 19, 2013

Memorial Service -- Mar. 30th

Scott's family will receive friends Saturday, March 30, 2013 from 11:30 a.m. to 2:30 p.m. at the All Seasons Chapel at the Whitehaven Memorial Park where a memorial service will be held at the conclusion of the calling hours at 1:00 p.m.

The White Haven Memorial Park (http://www.whitehavenmemorialpark.com/) is located at 210 Marsh Road Pittsford, NY 14534

As mentioned, hours will be as follow:
  • 11:30 am - 1:00pm  Calling hours 
  • 1:00pm - 1:40pm  Memorial Service
  • 1:40pm - 2:30pm  Reception with light fare, coffee and refreshments
Photos and stories will be shared throughout the afternoon. My sister and I will not be wearing dark colors, as our Dad would have loved to see vibrance on the day we celebrate him! I encourage all those who attend to consider this as well.

Also, please continue to remember Scott by reading through his other blogs, which are much more high-spirited than this one:

Scott's obituary ran in the Sunday, Mar. 24 Democrat & Chronicle (Rochester, NY)

A. Scott Carey

Fairport:  March 12, 2013 at age 61. Passed peacefully while surrounded by his family. Survived by his parents, Alan and Marieta Carey, son, Adam, daughter, Allison, brother, Craig (Cathie), nephew, Jon, aunt, Marion Tallman, cousins and many friends, including those from Prague in the Czech Republic with whom he shared a special connection.

A 1974 graduate of Houghton College, Scott spent  most of his career working in the healthcare field, except for a recent multi-year sabbatical when he taught English in Prague, Czech Republic. He returned to his tenure at the University of Rochester in 2012 as Ambulatory Care Administrator: Obstetrics & Gynecology. In his spare time Scott was an active member of the Finger Lakes Region Porsche Club of America.

Sunday, March 17, 2013

Requesting photos and stories of Scott (3/17)

Allie and I have been busy preparing Dad's Memorial Service. We are not certain when the service will take place, but will notify you when we've made arrangements.

In the meantime we have been digging through old pictures and reminiscing old times with Dad.

As many friends already have, I'd like to ask those of you who'd care enough to provide any pictures you might have of our dad. We have also loved reading your "Scott" stories of how he affected your life or even just how you've met or your favorite memory of him. So please, keep these coming!
(If you need an address, please message me and I'll forward you the email address)

If you don't know Scott at all, we'd love to hear how this blog has helped you out, too. It was Scott's wish to document this journey publicly so that there is more information for those that seek it. He knew it'd be a long and involved recovery and so he offered his objective and very real account.

If you have already sent us messages--thank you. It has meant so much to my sister and I to read so many wonderful stories about our father. We will try our best to reply to each of you when we have the time.

And, yes, I've been receiving email at both the gmail and yahoo addresses. Send it to any address you have.

Thank you.

Wednesday, March 13, 2013

Tuesday, March 12, 2013

We arrived late Monday night and were able to squeeze in several hours with Dad before we checked in to the hotel. He wasn't responsive but we were told he'd been this way since Friday. His other vital signs were stable, so we didn't expect anything otherwise. Allie and I were able to meet with Dr. A's fellow who gave us an update on Dad:

His tube feeds were being pushed at 1200cc a day, from which only 400cc were ever absorbed--a pretty low volume. But when we arrived Dad had been prescribed pressors, which raise blood pressure when it drops to unsafe levels. As the drugs work the nurses turn off j-tube feeds to prevent damage to his GI tract. So no calories. The fellow allowed us to review his recent chest x-rays. He pointed out the rapid saturation of his lungs (caused by his pneumonia) over weeks' time--we also reviewed his latest CT scan.

All numbers and scans aside we knew Dad was tired (so we were) so we left the hospital to stay up and put together a list of questions we wanted to ask the doctors the next morning.

This morning we arrived at the hospital to find Dad in a similar condition when we left him last night--despondent but stable. It wasn't long until we were called into a private room and having discussions with 4 of Dad's doctors: his chief surgeon (Dr. A), the pulmonary specialist, his nephrologist and the infectious diseases doctor. Each had a chance to give us a comprehensive update on Dad's status and prognosis. We were given all the time we needed to make sure our questions were answered. And they were. All of them.

Dr. A began by reviewing Scott's struggle over the past 2 two weeks of decline, speaking specifically about his multi-system failure (including liver failure, the recent kidney failure, respiratory infection and the increasing fluid in his circulatory system). We thought, "get rid of the fluid again" but Dr. A discussed how diuretics were no longer an option since lessening the fluid would make it more difficult for his heart's blood pressure to remain stable. Also, Dad needed his kidney to expel the liquid waste and that's IF his kidney was functional (which is currently in acute kidney failure). We thought: "give him calories to stimulate his liver functionality" to which Dr. A responded that he needed the pressors more, making it difficult for Dad to receive much-needed calories through the tube feed. "Why is he so out of it, but not medically sedated?" Dr. A response: "his liver's disfunction releases ammonia into his blood; this toxin debilitates the mind and places Dad in his non-responsive state." To our disappointment there is no way to diffuse this ammonia or other toxic enzymes from Dad's blood. Because of his fuzziness Dad has been very mildly sedated otherwise (if at all) over the past week. 

The nephrologist (a doctor that focuses on kidney function) mentioned that Dad's recent kidney failure was not good. And that the only response to the failing kidney would call for immediate dialysis. As some/most of you know, prior to Dad's kidney transplant 12 years ago he dialyzed for about 2 years. This was a difficult time for Scott and one he was adamant to never relive. To hear the doctor mention dialysis could be temporary but might be chronic (if he recovered) was important for us to hear. Other non-psychological risks with dialysis included dialysis line infections, further insults to other systems or even sepsis. 

Next was the pulmonary specialist; he said that after the second surgery to remove the hematoma, Scott's lungs were filled with water. The ventilator's intended use was to dehydrate his lungs; instead the water promoted bacterial growth which spread very quickly (evidenced on the x-rays we reviewed last night). The one bacteria gave way to another which deteriorated his lungs' health even more, allowing blood, puss and other body proteins to block and prevent the oxygen/blood gas exchange. Dad was entirely reliant on the ventilator at this point due to the foreign bodies in his respiratory system and had elevated breathing levels to try and compensate for his lack of breath. It was this doctor's opinion (shared by the other doctors) that his lungs were should be considered the most imminent and persistent problem.

The infectious disease doctor mentioned that he had prescribed every antibiotic imaginable, even those closely related to ones on Dad's allergy list, but they were known to treat the bacteria growing in his lungs. Unfortunately, it seemed that the consistently high volume of antibiotics in Dad's system (for ~6 weeks) had a number of unfortunate consequences: first, long-term antibiotic use promotes the growth of drug-resistant bacteria--this bacteria does not tend to be affected by proven medicine; and second, each antibiotic carries with in nephrotoxins that damage/insult the kidney. It was interesting to note that the day after they administered a drug listed on Dad's allergy list (cipro) his kidney dried up. Regardless of what lead to the damage, having his kidney functioning again would not heal his liver, nor would it cure the infection in his lungs. The doctor mentioned "there is not another pill we can give him"--the drugs were not working either.

They tried to put things in perspective using phrases such as "he's a 60 year old [61 actually] with a 90 year old's body", "any treatment applied now would not be treating him, it'd be treating his numbers or you [his family/friends]", or describing him as "resilient", "strong", "a fighter", "courageous" and "compassionate". None of which seemed to help the situation, but at the end of the discussion we were faced with a decision. All we wanted was to talk with our Dad and hear his opinion on the whole mess.

They said it was unlikely but we had our chance to talk to our Dad. Right after this meeting Allie and I spent some one-on-two time with our father. Since it was still early in the day (around 10 EST), we caught him with enough energy to "communicate" or maybe just "listen". His eyes were surprisingly open and searching when he heard our voices--must've been a first in a while. Sometimes he'd blink, widen his eyes, grunt or gurgle--not to any request or statement in particular but enough for us to feel as though he understood what we were saying about his kidneys, his worsening condition and everything else on our minds and hearts. We let him know we love him and that his brother and others were on their way to his room to spend time with him. 

The family spent the next several hours in his room chatting with him and dusting off old memories; we caught up and laughed over forgotten stories. There was a hum in the room that you'd find at family reunions and Dad was a part of it. We played his favorite songs for him and even turned on the FoodNetwork (he could never get enough of this channel!). We were each able to have a nice quiet or talkative candid moment with Dad. The rhythm of the next 6 hours felt easy, normal and cheery. 

Our father, Scott, exhaled one last final sigh of relief around 7:17pm EST. He was in no pain and he left quickly. His brother Craig, Craig's wife Cathy, and our mother Judy were sitting along-side his bed, while Allie and I held each of his hands, leaning close. We spoke to him and rubbed his head, neck and cheeks. He most certainly felt our love fill him and pour over him during his last moments.

Monday, March 11, 2013

Monday - Update (3/11)

I spoke with Dr. A this morning and his prognosis of Scott was not good. Dr. A overviewed the ups and downs with his blood pressure, the persistant infection and fluid in his lungs, the presence of a sinus infection and his continued need for more platelets and plasma units.

Over the weekend, Scott's liver enzyme count remained at all-time high levels (around 38, it should be 1). Overnight his creatinine spiked to 1.8 and his kidney's urine output is only a couple 2-5cc an hour (normally 30 - 50cc).

Since Scott has been on "life support" (ventilator, tube feeds, saline and blood) for the past 4 weeks it's been difficult to see where he stands in this whole thing. The nurses have increased tube feeds to help stimulate the liver with no positive result. A couple weeks ago Scott was able to breathe on his own for a few hours at a time. They have attempted to ween him off oxygen with no positive result. Scott has been on every type of anti-biotic imaginable (expect for Penicillin, which he is allergic to) but his infections persist along with his high white blood cell count. Some of these anti-biotics are incredibly strong and can push additional strain on his liver and his kidney. What's truly discouraging is that today was the first day his kidney has been affected by all of this--the cancer, the initial surgery last year, the surgeries since and the multitude of drugs. Kidney failure is now a frightening possibility and one that Scott would not endure with a smile on his face.

It seems as though his circulatory and endocrine systems are slowing, along with his respiratory--all signs of a tiring body. We are frustrated that a solution to one system may compromise another.

Allie, myself and our mother are heading down this afternoon for the next day or two. During this time we will be meeting with the surgeons and other medical staff that have been keeping tabs on Scott for the past 4 - 12 months. His brother and sister-in-law will arrive tomorrow afternoon. We are certainly discouraged and worry about Scott's mental/physical well-being. It's difficult to find a sign of hope or improvement but we continue to remain as positive as we can.

Please continue to hold Scott in your thoughts and prayers these next few days.

Friday - Update (3/8)

Allie visited Dad last Friday (3/8) and mentioned that he slept most of the time and was very out of it. Over the course of the week the nurses update were that his number were up and down.

While there, Allie had a chance to discuss some items with the doctor. She mentioned they were administering blood pressure medication since his heart was not pumping hard enough. Over the weekend his BP numbers were up and down; sometimes regular, sometimes low.

Allie also noted that Dad is more brown than his yellow jaundice, which still points to continued liver failure and degradation.

She sat and read and held his hand while she sat next to him. She was there for just a day.

Weekend - Update (3/4)

Sorry for the delay in updates; it's hard to keep updating to say that Dad hasn't been improving from day to day. Over the past week Scott has had visitors from his brother and his father--they went down last weekend (3/2, 3/3). Their update was that Dad seemed more frail than ever. He slept most of the time. The nurse wakes him to ask questions and he responds with a head shake or nod.  They are not sure if he is clear minded or not. He's been sedated for over a month, so who could blame him!

The liver is still not functioning well, if at all. His brother noted that he will have months of healing ahead of him, especially along his suture line, which is healing slowly.

Craig mentioned that he responds very positively to familiar voices, which we think helps the healing process.

His father mentioned that his white blood count numbers were still high, his liver numbers fluctuate but are still high, all other vitals are fluctuating so it's hard to determine a normal level for Scott at this time.

It's a short, week-old update. I'm preparing another now. Stay tuned.

Friday, March 1, 2013

Friday - Update (3/1)

It's been almost 30 days since the last major surgery and Scott is hanging in there despite the many challenges his recover is faced with.

I just spoke with Dr. A who gave me the following updates:

Thanks to the tracheostomy Scott has been entirely off sedation since the beginning of this week. Although he's not quite "with it" he opens his eyes with the nurses and shakes/nods his head as often as he can. He seems to be in a lot of pain, the source of which remains to be known; could be his discomfort in a bed for 30 days, the trachea,  something else or just the incision. The nurses administer pain killers when needed.

As for his incision, he still has a rather deep split toward the base of his sternum, and another (more aesthetic) half-way down his suture line. The wound seems to be healing, but slowly.

The reason for this slow healthy is cause by two main factors, which--to the doctor--are the only real obstacles Scott is facing right now: 1. Malnourishment, he needs calories to rebuild his body and get healthier; and 2. Liver functionality is critically poor.

So let's address point 1: they have been increasing his tube feeds quite steadily and have seen an increase in absorption in his cells from the calories and nutrients in the slurry. This is a good thing because Scott's GI tract seems to be ingesting the feedings, which increase nutrient levels in both blood, body and other cells. Dr. A mentioned that they will continue to increase tube feedings to help promote faster nourishment.

Point 2: the liver is very badly damaged, caused by the TPN feedings Scott was on for 6 months. Dr. A has never seen liver enzyme levels so high in any patient before, so this is a bit of unfamiliar territory for some of the staff at Passavant. His liver enzymes, which have been varying up and down (sometimes in the high teens, other times in the twenties), should be at 1. So anything above 1 is not good. The enzyme levels are measured when they seep from Scott's cells, the leaky cell is what causes jaundice. A main result when these enzymes seep from his cells is that his blood does clot as well as it should. So, Scott sometimes has light bleed in his GI tract, probably from his stomach (and other recently cut or irritated areas) but this is not a huge concern because it is related to a bad liver, not a bad stomach. The solution is giving Scott blood with healthy platelets and healthy liver enzymes that promote clotting, which stops the bleeding for a good amount of time. This doesn't happen often but one unit of blood was given last night.

Moving forward the doctor will begin to pull back anti-fungal and anti-biotic drugs that may impact liver function to help his liver kick back in action. Time will tell with this approach, as increase tube feedings hasn't improved liver function as anticipated.

They did mention earlier in the week they pushed 15 - 20 POUNDS of fluid from his body using diretics last week, after which he was able to practically breathe on his own for 6 hours. That was Wednesday, and he hasn't been able to breathe on his own again since but we're hopeful he just needs more strength.

The doctors are not overly concerned with Dad's current condition: he is stable, his other systems are stable (strong heart, regular BP, no fever, decreasing white blood cell count), his kidney is doing fine with a creatinine of 0.8, and he is moving about his bed. Not until other systems fail is there really a reason to worry; for now he is stable and simply needs time to recover. The increased feeds and decreased drugs should help. We should know more next week.