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.

Monday, February 25, 2013

Monday - Update (2/25)

Scott did fine from the tracheostomy procedure last Friday, at least now the tube is no longer in his mouth.

After the surgery he seemed to be more agitated than ever. His brother noticed Scott experiencing more pain than usual--as did the doctors. To help him through this pain he was sedated again and restrained. This is the first time we think Scott has really felt serious "pain" during this entire experience. The tube in the mouth is discomfort, and the original surgery left him without much pain. However now, whether it be from the tracheostomy or the incision on his abdomen, he's feeling it.

I just spoke with the nurse who gave me updates that all of Scott's numbers are stable, meaning they haven't been changing one way or the other--it didn't sound like there was any concern.

The doctor's have increased his tube feeds to help stimulate his liver and promote absorption. His stool is getting thicker, which is a good sign that his body is receptive to the fiber and tube feed increases. Still no update on his liver, which is now (and always has been) considered liver failure (there was never any virus that caused the jaundice--it was simply due to TPN damage). His brother and daughter both say his color is getting better.

The incision on his abdomen does not seem to be pulling apart, and the surgeon thinks the healing is going well otherwise. He is currently restrained and heavily sedated to decrease a movement that might aggravate his incision. He does move around a bit, but the medication is used to allow the body to heal.

For now he remains sedated, restrained and in some pain. Stable otherwise.

He's almost at week 4 in the ICU, the longest he's spent here.

Friday, February 22, 2013

Friday - Update (2/22)

Scott has been on the ventilator for almost 3 weeks (with a day or two when he was off it just after the initial surgery). There is a risk when the ventilator has been in place for longer than 2 weeks inthat the tube could damage the vocal chords. Not only that but Dad has been mildly to heavily sedated over this 3 week period as well, and that takes a toll on the mind and body.

That being said, Scott's going back into surgery today. He will have a procedure known as a tracheostomy, which we consider a good thing. It will be done at 11:30 EST. The benefits of this surgery will be:

  • no tube in Scott's mouth and vocal chords
  • less, to no, sedation since the tube will no longer be present
  • the ventilator tube will be inserted beneath his larynx
  • he will be able to speak again
  • he will be able to drink again (when permitted)
  • he will be able to eat again (when permitted)
Since he is already intubated and sedated there is little risk with this surgery and should take 20 minutes.

Now onto other updates:

The doctors have found more blood in Scott's stool, some in/around his G/J feeding tube, and the other day Dad threw up blood. They have been administering plasma and platelets as needed.

The GI docs think it might be an old clot that just broke up, but other are worried it might be something else. They want to scope the GI tract but I have not heard back on that yet. Yesterday they said the tracheostomy was no longer an option because of the blood, but they are moving forward with this today. Getting some mixed signals, but we hope this quick surgery is enough to wake Scott up and keep him more aware and lively!

Allie was down on Wednesday and Scott's brother is heading down today, returning Saturday.

Wednesday, February 20, 2013

Wednesday - Update (2/20)

Scott remains intubated and continues to very slowly recover from last week's surgery (AND the surgery a week and half before that!). His progress is brief and not without setbacks, which is discouraging. Being intubated requires sedation, which is has been receiving for almost two weeks now and he's non-responsive most of the time.

Since being on the ventilator stresses the body in many ways the surgeons are considering a tracheostomy to remove the ventilator tube, which will allow the vocal chords to reflex and heal; it will also allow him to be less sedated and begin to take water (food, too if/when permitted) and to talk. The procedure will insert a breathing tube below his voice box in his neck, and once better should heal up just fine.

In the meantime Scott's sedation has been reduced from time to time to see how he can breathe on his own. Although he is able to breathe on his own, it is too rapid and shallow to remain unassisted. This rapid breathing also points to possible infection (along with supporting white blood cell count and a fever). The doctors do not know what might be infected (Scott is already on 5 very strong antibiotics)--today is the first fever he has had since admittance.

They have discovered a thin trace of blood in his stool, which they are not concerned about since it is not much. By administering additional platelets and plasma whatever might be bleeding (most likely sutures) should clot and heal on their own.

His wound, which was sewn entirely shut has begun to split--to the size of a quarter--right underneath his sternum. The doctors hope the tear doesn't continue, but for now this will have to heal on its own. Right now the biggest concern is infection.

They have ordered Scott receive another CT scan this afternoon and will know the results soon to determine if fluid is increasing in his lungs or decreasing, or if there is an abscess in his abdomen or other localized area.

The doctor said Scott's recovery has been and will continue to be "horizontal"--whatever that means.

Allie is there with him today and will come back tonight. His brother plans to visit this weekend.

Tuesday, February 12, 2013

Tuesday Morning - Update (2/12)

Scott's surgery began at 5pm and last about 2 hours. The surgery was successful in that the hematoma was removed. Although, closing the wound was the greatest challenge. Last week the plastic surgeon spent 2+ hours repairs Scott's incision. It looked good from the outside for the past week. Although, during the surgery all of his work seemed to unravel. Dr. A mentioned that this would've eventually happened on its own (within days), and it was ultimately caused by a body that is just not strong enough or healthy enough to heal quickly.

After the surgery, since the fascia (the connective tissue around muscles that is commonly used as the base layer for sutures) was too fibrous and thin the doctor was unable to pull a protective wrap around Dad's organs; instead, he simply connected skin to skin. Of course, this type of closure is not ideal since it means less protection in the long run for Scott, an increase for potential infection and more prone to chronic hernia.

There were no major issues with the surgery. The hematoma is off to the lab to be cultured. Dad is recovering in the ICU again.

Also... I've added a feature to this blog which will allow you to subscribe to all updates. Please see the upper right hand side of this page, enter your email to receive instant email updates whenever I update this blog. It looks like this ==>

I hope this helps some of you keep tabs on Scott's progress.

Monday, February 11, 2013

Monday Afternoon - Update (2/11)


I've spoken with Dr. A and the decision was made to move forward with the surgery to remove the hematoma. The surgery is scheduled for later this evening (perhaps as soon as a few hours).

I've been told that the plastic surgeon will also be present to make sure he is stitched up correctly after the surgery is successful. 

Although absolutely none of Scott's cultures have come back as infected and he does not have a fever it is important to understand that Scott has not been improving; he is still intubated, his body is swelling with fluid, his white cell count is very elevated and he just has not been getting better. We hope this surgery will put him back on the path of progress. We also hope that the hematoma is in fact infected or else what would this surgery be about if it were not. Of course, we have every right to be concerned with Scott being in the condition he is in. The doctor feels comfortable with Scott's status and advised we move as quickly as possible.

Allie is there with him now and will be there until he is out of surgery through tomorrow. I will try my best to update the blog with the outcome of the surgery. Please wish him good health and strength!

Monday - Update (2/11)

Another day, another obstacle. Dad's white cell count has been increasing over the past several days. Even on 3 powerful antibiotics, this count continues to rise. This means there is an infection (a rather large one) somewhere in Scott's body. I received a call this morning from the PA and her news was not the greatest way to start a Monday.

Dr. A feels that it is necessary for Scott to undergo yet another surgery. This surgery would diffuse a potentially bad infection in his abdomen. As mentioned the other day, there is a hematoma that formed from surgery a week ago and the doctor believes this to be the source of Scott's infection. Surgery would mean resecting his staple line, which is healthy wonderfully, excising the hematoma, and cleaning his abdomen to reduce the likelihood of the infection returning.

The idea of this second emergency surgery is not comforting since it is exploratory in nature. Scott's body has also been slow to recover from the initial surgery and will be even slower when this second surgery is successful. Not only this, but he still in "liver failure" so the blood will not clot as it normally would otherwise, which may lead to additional abscess or hematomas post surgery.

I have not authorized the surgery until there is more discussion between the surgeon and the plastic surgeon and with myself to be sure Scott's body can even handle this surgery, or if there are other options to help determine the actual source of the infection.

I'll have more to update later this afternoon when I chat with the doctors.

Saturday, February 9, 2013

Saturday - Update (2/9)

** I hope everyone likes the new upbeat look and feel of the blog! -- Seems to be working! **

I spoke with the Surgeon's resident and the update is good, including a better outlook for Dad's recovery.

The results from his liver biopsy are still not back. The doctor's chose to biopsy for diagnostic reasons to be sure the TPN lead to his liver failure; therefore the results of this biopsy are not too important unless they point to viral infection, which in their opinion is unlikely.

The CT scan results are back and revealed that Scott does NOT have pneumonia, although he does have fluid in his lung, which is why he is on the ventilator. The doctor says he may be intubated for up to another 5 days (we'll see how things go--today they are trying to get him breathing on his own again, baby steps). Scott also has a pool of blood in his abdomen. This is not uncommon after a surgery like the one Scott went though, and because his liver function was very poor before the surgery, his blood was not coagulating or clotting during the surgery. The risk surrounding this pool of blood is infection. To prevent this, the doctors have him on 3 antibiotics that are helping to ward of infection.

His jaundice seems reduced since last week--I'm happy to see that. And since they are trying to get him breathing on his own his sedation is less so he's been a bit more responsive during the day. He's listening to his music again, which seems to put him at ease and comfort him.

His levels are stable without the use of blood pressure drugs or pain killers, his platelet count is up and his vitals seem good. Another important thing to note is that his heart is strong and healthy, his kidney is healthy and producing a good amount of urine.

..and the MOST important thing to note is that, after a few dye tests administered through the NG tube, the intestines seem to be connected, healing and functioning just fine. The nurses plan to increase Scott's feeding (through his j tube) with each day. This means more nutrients will be absorbed, thus nourishing his liver allowing the liver to clean itself and Scott's blood. His liver will begin to purge the poisons that are present and he will get better, it's just a matter of time.

Friday, February 8, 2013

Friday - Update (2/8)

There have been some major set-backs with Scott. I do not intend for that to scare anyone, but here are the details:

**I'm changing the theme and background of this blog so that things are a bit more uplifting, instead of that dark black. Maybe it'll help!**

Two days ago, Scott was talking (just briefly) with the nurses and seemed to be on the mend. Although, later Wednesday night and early Thursday morning Scott's health declined rather rapidly. His breathing became shallow and his white cell count was up. By mid-afternoon Scott's lungs were filling with fluid and they determined that pneumonia had set in. Fortunately, I was flying back to Rochester from business in New Orleans and was able to redirect my flight to Pittsburgh. Scott's brother picked me up from the airport to be with him during this new delay in recovery.

Scott was intubated just after lunch yesterday. Now a machine is regulating his breathing and the doctors hope this will help the fluid dissipate. He's on high doses of antibiotics to rid the infection in his lungs, his kidneys are producing less urine but his creatinine is 1.0. They are also pushing more potassium through him. The nurses mention that his liver still does not appear to be functioning well.

He went in for a CAT scan earlier today (10 EST) and the results STILL are not back. They will identify if the infection is in the lung or elsewhere in the body (they would not rule out infection in the abdomen). I'll update here when we know more about this scan.

Furthermore, the liver biopsy is STILL not back either and it has been over a week since the samples were submitted for review. We're following up on this as well.

He is being "fed" through his j-tube and they say his intestines are complete and functioning as expected--good news.

He currently has an NG tube, a breathing tube, two small sub-skin drains and a deeper abdomen-drain (both present after surgery). He is almost entirely out of it, however I got about 15 solid minutes (over the whole day today) with him when I knew he could hear me and his subtle nods gave me confidence that he'll get out of this jam, like all the others.

I will be here until tomorrow afternoon, waiting for the snow storm in the Northeast US passes (we're fine in PA). After that Allie will be here Sunday and Monday.

Monday, February 4, 2013

Monday - Update (1/4)

This weekend was quite uneventful--no major issues or improvements. Here are some updates:
  • Scott is still in the ICU (day 4)
  • He has received around 11 units of blood since his surgery. His HH (hematocrit & hemoglobin) levels are very low. It doesn't appear that his liver is working as well as it should. It was only until yesterday that they began to ween him off donor blood, and although his levels are still low they remain stable
  • His creatinine is right around 1.2 which means it's been on a steady decline over the weekend--a good sign. His kidney is getting stronger!
  • He is still very tired and weak, and he is not yet entirely lucid
We are still waiting to hear the results from his liver biopsy (maybe tomorrow we'll know more).

Hopefully Scott is discharged from the ICU, but we think there is still a lot to recover from.

Thursday Late AM - Update (1/31)


The nefrologist came by just now and mentioned Dad's creatinine went from 0.9 before the surgery to 1.4 today. Even though his blood pressure is stabilized, the doctor mentioned it may take a couple days to even out the kidney's functionality.

Scott's creatinine reached 1.7 later this evening.

Thursday, January 31, 2013

Thursday Early AM - Update (1/31)

Scott is recovering in the ICU this morning, they stopped the diprovan (the drug that maintains anesthesia) and was just extubated (no more tube in his mouth and windpipe). He is currently breathing on his own and says he is in no pain. He doesn't speak; he shakes his head.

We're standing by him and telling him some stories and sharing your emails/comments with him. He certainly hears us and we can tell that he is thankful!

Nothing new to report other than his vitals are normal,  he is receiving some units of blood to balance out all of his levels and he is tired!

Wednesday, January 30, 2013

Thursday - Update (1/31)

We were anticipating the surgery to last 4-6 hours today, but it ended up taking 10 hours. As I mentioned earlier there were two main stages to today's operation: 1. removing and correcting existing issues and 2. finding a way to close the incisions.

First and foremost, Dad's PMP mucus was nowhere to be found. It seems like he is still cancer-free, although the battle has always been with the surgery not necessarily the disease. So what happened during the surgery?

The first stint was 7.5 hours long and the following actions were taken by Dr. A and his team: the part of his stomach that contains the fistula was cut and removed, "fasteners" were used inside and out to make sure the stomach flesh would heal to itself; the small intestine tissue that was originally connected to the stomach back in April was resected--about 3 inches were removed so that healthier intestine could be reattached to the stomach; his ostomy was successfully reversed and, again, older small intestine was removed (about 2 inches) so that healthier tissue could connect his small intestine with his large intestine; the ostomy itself was repaired and the hole in the skin was closed up; the doctor identified that his large intestine was healthy and looked good; there were no visible signs of trouble with the liver, affirming the assumption his hepatitis is TPN induced (we may know more once the labs come back on the liver); the G/J tube was replaced with a new sterile feed line. Because there was some scar tissue and "sticking" of the organs to one another Scott will most likely have some inflammation in his chest, so he has a drain tube in his abdomen for any fluids that might build up.

Once this major surgery was complete, major plastic surgery was next and it lasted 2.5 hours: Dr. K reinforced the sutures closing the ostomy site with additional skin grafts (the more the better!); he mentioned the fistula hole was small enough to heal on its own; and then came some really interesting medicine: because his new incision was in the same place as his old incision (from rib cage to below his belly button) the doctor had to remove all scar tissue making the "gap" even larger, and it is this gap that is very difficult to close without help.

You see, a complete close-up requires two main components: 1. a muscle-like base to hold one set of sutures and 2. the fat/skin base that might hold additional sutures or staples. Dr K "released" two of Scott's muscles in his stomach, brought them toward the center of his belly to create a base for the sutures, which established the incision's bottom half for muscle base. The top-half base was creating using acellular human skin grafts, doubled-up and connected to healthy tissue, like a patch over the gaping hole in his chest. Then they very carefully "pulled" his top layer of skin together over his entire incision site and closed him up (this time for good!!). There is still exposed graft; the idea being that his own skin will blend with the graft healing completely.

So, after 13+ hours of prep and time in the OR he is now recovering in the ICU. His vitals are normal. Allie and I are looking forward to seeing him tomorrow morning!

I'll update more as I am able.

January 2013 - Update (1/30)

It's 11:30 AM EST on Wednesday, January 30, 2013 and Scott is currently in the middle of his last (hopefully) surgery related to his PMP cancer. I'm sorry if this is a surprise to some/most of you. Details about his surgery follow this summary of what Scott has been through since his last update in late August 2012:

Shortly after his last post Scott moved back into his own apartment. His independence seemed to help strengthen his resolve to get better; he would take daily trips to and from Wegmans, the drug store, the bank and other local shops. Although he was slow-moving (still weighing in under 100 lbs.) he'd climb into his car and zoom about acting like nothing was wrong. Although, each day he'd return home exhausted and tired. He had a flight of stairs leading to his apartment, which were a challenge for him the first couple weeks, but after his strength improved so did his endurance. Still discouraged and feeling like there's nothing to report in his day-to-day his blog collected some digital dust.

From September to December Scott was receiving TPN as the primary source for caloric nutrient (administered through his pick line that had been in place since it was replaced at Strong -- I believe). Of course, this time period was the most difficult to navigate since his fistula was not healing, seemingly at all, which meant no food, no water, nothing but TPN during the evening and saline in the morning (or whenever he had symptoms of dehydration). He impressed his visiting nurses so much:  administering his own bandages, ostomy/fistula apparatuses and TPN/saline bags, that they stopped showing up--except when he needed new supplies.

The most frustrating part of all of this for him was that there was no forward movement in his condition. Because of the placement of his "newly shaped" stomach his ostomy and fistula apparatuses never seemed to fit well and would break daily. Needless to say, Dad dealt with a lot of shit. But he dealt with it hoping that the fistula would begin to close and someday heal.

It wasn't until late September that he began to notice blood coming from his fistula. He was assured this may be related to a vessel being used to heal the fistula (first step to healing!!). So he dealt with the blood; some days there was none, other days there was a lot. We kept thinking, blood might be bad, why is there blood, to which we received very little feedback.

One early morning at 4am in late October the fistula really began to bleed, so much so that Scott called an ambulance to the emergency room. It was ONLY here that they found a rather large ulcer or injury to the stomach that was bleeding profusely. He was immediately admitted to the OR and, after a laparoscopic procedure, was all stapled up--that was the end of the bleeding fistula.

Out from emergency surgery Scott grew tired of waiting to heal, growing equally tired of the "let's wait 2 weeks to see if you get better" approach. The doctors finally gave permission to try solid foods--what better time to begin eating again--a week before Thanksgiving! I'm sure he still didn't eat as much as he would've liked. He began to eat niblets of food, which rarely came out from his fistula but were in his other bag; he felt a bit more energy but was still following the nightly TPN schedule. Anytime he'd ingest water or liquids his fistula would immediately spring a leak--the bag would then leak or break, making the day that much more difficult to get through.

December brought new challenges related to his inability to eat. Since his ostomy was on his small intestine Scott's body could not get the nourishment it required. So no matter how much food he'd eat, and how many full or split-open bags he replaced he still was administering TPN. His energy levels began to plummet and jaundice set in--the doctor's noted this oftentimes happens to patients on TPN. The liver cannot process the TPN in as healthy a way as it should, and being on other drugs related to his recovery and kidney transplant, his liver didn't seem to last as long as was expected.

A plan to have Scott entirely off TPN as soon as possible was in place. Scott tried to revert back to J-tube feeds, but this did not seem to improve his physical health, and his jaundice worsened. In mid January he had a CT scan which identified a mass on his liver, along with cysts on his inert kidneys and his transplanted kidney. The CT was performed, though, to identify the size and condition of his fistula, his ostomy and general internal health. Dr. A in UPMC (PA) was contacted and two weeks later Scott is back at Passavant, and is currently (at this moment) under going surgery.

The prep for the surgery, they traced Dad's digestive tract to make sure all was in tact--the scans showed that it was. Although, there was confusion when some of the trace was expelled from his fistula. Still no word on that--could've been fluid unrelated to the enema.

Here are the details of the surgery: resect his stomach to remove his fistula, reverse his ostomy, biopsy his liver, and POSSIBLY remove his J/G feed tube (although not likely since TPN seems out of the question and he'll NPO post surgery). The surgery is not without risks though, primarily the answer to the question, how do they close him up? Since he is on prednisone his skin is very thin and less likely to hold a staple or stich, he is very mal-nourished because he hasn't been eating, which means less muscle for a potential staple or stich, and he has had multiple surgeries over the same sites on his body (lots of bad scar tissue).

They may employ several options to help out with his skin deficiencies: skin graft from his thigh, acellular matrix skin grafts (a type of bioengineered skin graft), anatomical re-placement of muscles (simply meaning working with Dad's anatomy to slight move good muscle to promote faster healing), and other forms of harvested tissues. If all other options fail is keeping the wound open (like last time) and allow the body to heal itself. This is a risk for infection, etc, but he's been through this before.

When the surgery is successful, Dad's larger bowels will be restarted and any ingested food will travel the length of his digestive tract. Fluid, too, will travel his large bowels now that his fistula will be closed. The biopsy of the liver should help resolve his hepatitis. With his bowels reconnected his body will retain more nutrients from his tube feeds (not TPN) and solid foods, he will gain weight and get healthy--this has been the end-goal for Dad and for all of us!