Home 30 days

I ve been home from My Hospital experience now for 30 days.   It has not been what I expected.
It is wonderful to be here at home, to see my kids.  they stop over often.   It is a comfort.

I still have a fistula, the opening from my stomach to the outside of my chest.  A speical apparatus overs the wholes, but it still drains.. than about every 3 or 4th days it breaks open and a nursing service must then come and fix it to stops it from leaking all over the place.  This is very tryiung. and it is because of this, that:

Since my 4th day home, the doctors has made me NPO. Nothing my month.  So although for the first few days I was able to enjoy food, my mothers cooking, that ended quickly.  I have not eaten all month.
Throughout this month i have weighed 103 to 105 pounds.  However, a turn for the worse over the weekend and as of yesterday; 99.2 pounds.  Very much scary.  99 pounds.
'
I am on tube feedings at night and hook myself up at 4:00 here in bed and the tube food gets pumped in for trhe next 16 hours..so, a abit boring lying in bed for 16 hours... but my son, just this week but a router here in my parents computer and I now have wi-fi  Thanks Adam..  

'I am very weak and can't seem to sit in a chair for more than an hour.

and I can not remember my password for my yahoo email account.  so for those who have written me via yahoo, thank you, burt I can't acess it now, hence why you have not heard from me. It has been a very frustrating time this month....

I will hope September will be better...


I still hope to go back to my apartment in early september.just for the change .  Hey is might be just wht I need.  ;-)   I do hope for a better month ahead.  Heck ... it just can;'t ny worse than Augusut, can it?

take care....   - Scott

Home for 3+ weeks

First I want to apologize, I have been somewhat remiss in writing since I have been home from Pittsburgh.
But it have found it hard to sit at the computer for any length of time....

Let me fill you in on the healing process now that I am home...

So it has been about 3+ weeks since coming home from Pittsburgh via a 4.5 hour ambulance ride to Rochester...it was nice to be home.

I spend 96 days in the hospital in Pittsburgh and was looking forward to eating Mom's cooking and gettting heavier.  I weighed 132 pounds when I was admitted for the surgery in April.  I weigh 103 NOW.  I am reallly skin and bones.  Lost most of what Hair i had as well and don't look a lot like me....   but time will make that better...

I have two holes iin my chest.  I have a colonoscopy and a fistula.  The fistula is an aberration that occurs from time to time with this type of surgery and I won.  I have one.  It goes from the my half a stomach to the surface of my chest and must heal itself from the inside out.

as I was saying.... the fistula was healing but upon arrival at home it doubled in size and I was immediately plaed on no food.  NPO.  Nothing but jello.  So i have nothing to eat by mouth since a few days after arriving home and that was 3 weeks ago.  I AM hungry!!

Plus my applicances that are now part of me that coffect fluids, from my body constsantly break...every day, so I wake up in the middle of the night covered in excretment...or really any time.  Like this morning, it once again broke open and I am waiting for the home health nurse to arrive to repair it.... not pleasant!  It is tiring and not fun.

so you could say I am healing at home... but it is  a slow process.  I reallly want to eat...

and the energy level i have is close to non-exisistant. The food I get by tube into my body barely covers what I expend each day so I am really quite weak.... and tht is not fun either...

so this is the news from home... 3+ weeks into being home..  But it IS nice to be home instead of the hospital and it IS nice to have family around,,,but I AM frustrated and just wish to have my strength back, wish to be have this fistula closed so I can eat once again and wish to start gaining weight once again...

maybe tomorrow....or next week....   hummmm   Hope so.

so now this is Scott....   

Tuesday - Update (7/31)

The past week has been great. Stopping by and seeing Dad frequently has been so wonderful, and Allie and I take the opportunity frequently. Over the past week Dad has been visited by many nurses all trying their best to get him back to good health. He has been eating a lot of great home-cooked meals and has been walking around without the use of his walker (great stuff!)

There has been a major set-back though. Because he is eating so much the fistula in his stomach is not closing; instead, it is leaking a lot of fluid. So, his wound is now cleaned daily while his stomach continues to leak. The doctor has ordered NO FOOD until the fistula heals, which could be two weeks or more. This now means he is back to only enough water to wet his lips, twice daily glucose drips and an entire dependency on his J-tube feeds which are administered nightly. 

It's difficult to see Dad taking all of this in stride--he certainly could use some distraction and relief! I'd like to say that he is ready to take phone calls and maybe even some visits (depending on how the next couple of days go--today is day 1 of no food). His cell phone is on and he is taking calls. His parents' line is also connected and he has a little station next to his bed where he'll spend 4-hours at a time while the bags drip. If you need his number please email me directly.

Adam

Tuesday - Update (7/24)

Dad is back, safe and sound, in Rochester!

We are all so happy to have him right around the corner from us, finally. He arrived yesterday in an ambulance from UPMC Passavant. He left PA at 10am and arrived shortly after 3pm. Allie and I were there to welcome him home and chat with his visiting nurse. He said the ambulance ride wasn't so great, but we're happy it wasn't a large out of pocket expense.

He will have scheduled PT, OT and nutrition sessions with various different visiting specialists each day until he is well enough to go back to his normal day-to-day.

It was just great to have dinner with him last night. He ate a lot of chicken, pork, rice and brownies. I think he'll be enjoying more delicious meals now that he's out of the hospital.

He should be back on the internet in no time, and he will most likely take over this blog soon. He can give his own personal accounts of his recovering days much better than I can. I'm sure he will be happy to entertain visitors and phone calls this week and for the future of his stay at his parents'. I'll arrange with him the best way to get in touch and post it here.

He is still receiving nightly feeds through his J-tube. The hole in his stomach (fistula) is still present and there is a bag draining its contents. His wound will need to be cleaned daily and the family is receiving some training to help the nurse with this. Dad's attitude is great and he is already determined to get better. Last night he walked up the stairs to his temporary bedroom with very little support from me. He can walk baby steps on his own for 20 feet or so, but prefers to lean on the walker for now until his strength comes back.

It felt good to finally hug him after all these months.

Friday - Update (7/20) !!!

Great news, everyone: Scott is coming home!!

His doctor has approved his discharge home Monday 7/23 at 9am from UPMC. Yes, home. No place in New York is considered an Acute Care Facility so instead of a rehabilitation center or nursing home Dad will be living with his parents in Pittsford, NY until he is well enough to go back to his apartment in Fairport. Dad says he doesn't plan to stay at his parents' long; he's really going to focus on getting his strength back ASAP.

The insurance company has approved a visiting nursing service to tend to Dad while he is back in Rochester. His wound will require re-dressing daily, along with check-ups.

Also, the insurance company has approved his transfer from Passavant in Pittsburgh to Pittsford, NY by ambulance! ...for only a thirty dollar co-pay. Allie and I had planned to pick him up on Monday morning.

So right now the whole family is excited to welcome him home and see him much more often. I'd say he'll be getting exponentially better now that he will be out of the hospital. He'll have much more opportunity to walk around, review emails, take phone calls and appreciate this nice Rochester weather we've been having.

Thank you for everyone's continued support and efforts these past.. wow.. 3 months!

Wednesday - Update (7/18)

Two weeks have passed since the last update. Sorry for the delay, everyone! Fortunately there have been no emergencies or scares during this time, which is always a relief. Yes, he is still in the hospital in Pittsburgh; he is still healing; he is still eating a small amount of solid foods, and he is still waiting break out of that place!

Over the past couple weeks, Dad has been gaining more and more strength. The doctor's are surprised by his accomplishments and his strength. When he walks, he does laps around his floor and last week (when Allie visited) he went outside for the first time in almost 3 months! He says it felt incredible to have the sun on him. He just cannot wait to get more exercise. He had his wound-vac removed so they are trying to heal this wound on its own but it keeps splitting open when he moves around or walks, so he is less mobile than he used to be.

He has been on a soft food diet and enjoys eating a lot! He keeps telling my sister and I all the treats he can't wait to eat when he get's out of the hospital. She snuck in a Wegmans glazed donut in and he loved it! His appetite has lessened because his stomach is smaller and he gets nausea in the evening.

The doctor's forecast him to be discharged within the week. We have heard rumors a specific date, but will wait to share that with everyone until it is confirmed either tomorrow or Friday. The days is near that Dad is back in Rochester!

Adam

Tuesday - Update (7/3)

Dad has been doing very well lately. He is still on his soft food diet: enjoying turkey and mashed potatoes, oatmeal, etc. He says everything is delicious.

He is getting very antsy now that he is on day eighty-something.. He cannot wait to leave the hospital. He takes long walks each day, and his strength is returning. The doctor's say that we will be discharged soon (once they get his white count down a bit).

That being said, it is very difficult working with the social worker who says that no New York State facility will accept a patience with a wound vac (even one that is not on suction or vacuum). Dad is discouraged because he wants to be home with his family, but many homes in Rochester have already denied him.

We've suggested such places as St. Anne's, Monroe Community Hospital, Highlands, Fairport Baptist home. But as far as we know, no place will accept him. If anyone reading this has suggestions, recommendations or connections with local Rochester-area rehabilitation facilities (that can handle wounds--because that's all he has at this point) I'd welcome you're input!

The social worker did mention that a home rehab is possible, which would mean that Dad would be home (either his place, or his parents'). A nurse would make scheduled visits to tend to him, but he would otherwise be on his own (outside of monitored/licensed care). We are reluctant to consider such an approach, but may be forced as the only option to bring him back to Rochester. I know another couple weeks in PA (even if it's closer, like Erie) would not be ideal for Dad--he is ready to bulk up, get stronger and get better! Even more important to him is that he just wants to get back to work!!

More updates to come as they happen, but Scott is doing great and just dealing now with transfer options.

Adam

Wednesday - Update (6/27)

I'm happy to report that Dad is still as sharp as ever. It absolutely must've been the IV blood pressure medication. 

Right now he is in very stable condition: regular blood pressure and rate, great creatinine level, etc etc etc. All great news.

I call Dad each day now (since his improvement late last week) and he can carry on a conversation as if  the surgery never happened. His voice is raspy, but otherwise he's sharp. He had oatmeal yesterday morning for breakfast--yes oatmeal. This means he is on a soft diet (upgrade from liquid only!). 

He has more and more energy. The nurse just mentioned that he helps himself out of bed, and gets back in it by himself. He walks around just fine. She also mentioned that from last week, he has gotten a lot stronger.

This all being said, I've been in serious discussions with the social worker on his transfer back to Rochester. Although it is difficult to transfer someone with a wound-vac (this is what drains his main wound on his chest), the social worker is hopeful they will find a location in Rochester, NY. The doctor's originally said they'd discharge him tomorrow... YES, TOMORROW! But since they have not heard back from all nursing homes in our area they cannot make a move just yet; so, they will push his transfer out until next week (early). At this point, I believe there is nothing that is preventing him from being transferred other than an available home. We are considering Monroe Community Hospital, St Agnes or Fairport Baptist home--we hope they consider us so that he is able to be among family and friends.

More good news to come.

Adam

Thursday - Update (6/21)

Dad has been released from the ICU and is back in a new room 6120.

To quote my grandfather, "HE IS A CHANGED MAN."

His vitals have stabilized (temp back to normal, still an elevated white count though). They chose NOT to perform a spinal tap. His cultures ALL came back negative! They will keep him on the antibiotics, although they are not sure where the infection is located.

Allie and I were able to catch up yesterday and she said she spoke to Dad yesterday. She mentioned that he is no longer having much confusion, and he is no longer unsettled and fidgety when trying to fall asleep. If you remember, he was suffering from extreme jerks and jolts when he became tired. When I was there Dr. A removed Libetalol from his med lists--maybe the absence of this BP med has improved his state--we don't care what it was. We have our Dad back!

I just got off the phone with Dad and he sounds incredible. He is back on a liquid diet, doing just fine on it. His BP is stable, no meds (we've been told by one nurse). He is incredibly lucid, understanding, coherent and personal. There is no better way to say it other than "he is back". What a scare that was for the past few days.

Craig will visit tomorrow (Friday) for the weekend. Allie may return early next week.

I will try my best to update the blog before I leave this weekend for a motorcycle race in Canada, called Paris-Dacre Challenge. I know that Dad is rooting for me and he wanted me to share some info with you, too. http://www.rallyconnex.com/p2d2012.htm

Adam

Tuesday Morning - Update (6/19)

I spoke to Dr. A last night and this is what was discussed:

Dad's CAT scan showed no sign of fluid breach or leaks in his GI tract. The contrast shows that his G-tube remains correctly placed and that there is no cause for concern about fluid build-up anywhere.

They did re-change his wound vac yesterday since the pump seemed to be failing--now it is OK and pulling almost zero ml fluid--a good sign.

Dad's urinalysis came back with negative results--so the infection is not kidney related and his kidney is fine.

They suspect, again, the pick line to be the source of the infection. They ares till waiting on the cultures to come back.

Last night I also spoke to the doctor's assistance and she mentioned they may perform a spinal tap to see if his hallucinations, fever and erratic behavior is due to potential meningitis. I'm unsure if they proceeded with these tests, but I should know more as the day moves on.

Monday - Update (6/18)

Not very good news today... unfortunately. Scott is being moved from Room 6109 back to the ICU (I think room 24, but not certain). I just hung up with the Doctor's assistant.

Dad's temperature was up this morning and again this afternoon. The doctor's suspect an infection is growing somewhere inside Dad. His white cell count (which usually has hovered high near 10) is now at 16. He is very confused and delirious. They believe sending him to ICU will make sure he is under constant watch and care. It's a necessary move.

As for the source of the potential infection? One likely spot is his pick line (which has been there for over a month--needs changing anyway). They will send swabs to culture (we should know in a couple of days if this is the source of the infection).

They are also going to flush his G-tube with contrast, and they are immediately going to give him a CAT scan to identify (hopefully rule out) any leaks in his GI. This scan will also make sure his G-tube is placed correctly. If they find fluid build up, they will insert more drain tubes and also try to identify the source of the leak.

His wound vac, which was pulling 75 ml for the past couple of days has been pulling much more since yesterday's leak issue--it's pulling now 300ml, but has already been dumped once.

His G-tube is back on suction (as it was yesterday) and is only pulling about 100ml (not much compared to the liters it was pulling on Saturday.

His J-tube feedings are still suspended, and his ileostomy is certainly catching much more fluid than previous days (about 500 ml each clean). The nurse says that it seems to contain some bile, which would mean that his stomach fluid is flowing through his GI tract--a good sign I was assured.

We should know the results from the CAT scan by 8pm tonight (once Dr. A is our from surgery). In the meantime, Dad will be back in ICU and needing your well wishes!

I will update when I know more.

Adam

Sunday - Update (6/17)

UPDATE 1:17 PM EST: "W" suspended the x-ray test in lieu of waiting for the chest repack. They said that will be coming, but they are about an hour late. He has been dry heaving a lot lately, but they say he has been doing this for a few days (mostly at night). His leaking has slowed, but still leaks a lot when he sat upright.


UPDATE 11:53 AM EST : The nurse said they will push some dye through Dad's G-tube, take an x-ray and see if the G-tube was dislodged somehow. They are moving quickly on this, since it will be another 1.5 hours until the skin and wound team will arrive--they want some results before this time.

EARLIER: Today Dad had one of his 3 tubes removed. They removed his "J P Bulb"; this type of tube removes additional fluid from around surgery sites. Nurses and doctors identify patches of fluid using CAT scans. They also took him off the vacuum G-tube, which forcibly empties his stomach--they replaced it with a gravity bag (no suction).

His tube was removed just before breakfast was served. He received breakfast at 8am, and he ate some orange ice cream, chicken broth, tea, cranberry/raspberry juice. Shortly after he ate this food, his chest started leaking fluid (the same fluid that WAS being vacuumed from his G-tube yesterday).

This fluid is secreting from his wound vac site (this is being drained by a vacuum as well, but is uncommon--remember that this used to pull 250 - 800 ml a day, but has recently only been pulling 75ml). It is normal to have mild seepage from the J P removal site, which it there is, but it seems as though the flow of fluids has redirected since its removal. Now, instead of flowing to the G-tube, "stomach fluids" are seeping from the middle of his chest. What is happening now is that his digestive enzymes and acids are on his bare skin and turning his skin raw and red--not a good thing. The sitter is making sure they are being wiped off, constantly.

The doctor on staff, we'll call him "W" says this is nothing to be concerned about (at the moment). As long as there is something leaking from him, he doesn't care from where, it's a good thing. "W" says that The skin and wound team is returning to Scott's side this morning to repack his incision. While he's in there, she may be able to identify whether or not the G-tube is still in its proper place (for proper drainage). "W" thinks that there is a chance (slim, hopefully) that the G-tube is no longer in the correct position. If this is the case, Dad will have to have another surgery to replace the G-tube--we're hoping that it's not the case, but the G-tube is completely empty (it pulled off liters and liters of fluid yesterday).

We had advised to "W" that if fluid is in his peritoneal cavity, it drastically increases his chances of infections and of becoming septic (this is exactly what occurred the last time, which caused the second major surgery). He said that once the wound is re-packed the seal should be solid, we'll see.

Saturday - Update (6/16)

Made it here just fine last night. Dad was in a shallow sleep and was very fidgety--he'd throw out his arms as if to catch himself and would sometimes wake himself up. When I asked what was happening to him he'd say that he was on the edge of 2 or 3 flights of stairs, and as he was falling over the edge he'd reach out to catch himself; he'd often grab a book or a pen or a door knob. It doesn't make sense to him at all.

When Dad is awake (hours after a BP meds dose) he speaks coherently and with the same vocabulary as he's always used, which is refreshing to hear. The doctors and some nurses have noticed that Dad has mentally decayed a bit from 2 weeks ago, but this past week they have seen more improvement.

He is currently only on two different medications for his elevated BP (His high BP is odd to his main doctor, who sees patient's BP drop after surgeries, not increase.) He is on his anti-rejection drug prolaf, some vitamins (B12 and folic acid, they are giving him iron for his hemoglobin levels, NO antibiotics, I can have a more comprehensive list sometime soon.

112/67 is his current BP on the meds.

I spoke to many doctors today and here is a bulleted synopsis of what we discussed:

• Is Dad's hemoglobin level (7) low due to internal bleeding? "No."
• It seems as though he begins to tremor and hallucinate right after he is administered his blood pressure medication. "Ok."
• Is Dad's hallucination due to medication? "Maybe."
• Can you work with his medication to decrease his hallucinations or tremors? "Sure."
• How are his drains doing? "Good, the vac (attached to his incision) has been draining less, which is a good sign. His G-tube, which empties his stomach seems to be pulling healthy fluids and his J-tube is unclogged and functioning OK. His J-tube administers his liquid food (Peptamen), his G-tube drains his stomach (so fluids in = fluids out) and his vac drains his cavity and his wound."
• Tell me more about the whole in his stomach.. "His hole is very tiny and exists from surgery. The vac is in place to drain any seepage that may come out of the hole and into the peritoneal cavity."
• How do you know when the hole is healed? "It is difficult to tell via scans, so the output from the vac and his comfort level in his abdomen would dictate the the hole is closing. Then they would remove the G-tube to see if his stomach would retain fluid on it's own. If the vac remains empty, these are all good signs that he is ready for more solid food.
• Tell me about his clear diet.. "He is allowed any fluids (as long as he is not nauseous) he'd like. It's ok for water, coffee, soda, broth, ice cream. Some fluid may way it deeper into his GI track, the rest would be sucked out the G-tube.
• Dad has some bed sores, how are you making sure these don't get infected? "A nurse cleans the sores each day and applies anti-biotic ointment. This ointment also relieves the pain of the sores. There is no sign for infection, although we are watching them carefully."
• Can we hold a conference call with all of his doctors to make sure everyone is on the same page and so the family can feel comfortable with Scott's progress when we're away? "Yes, absolutely. It can be arranged."

More news to come later.

Adam

Wednesday - Update (6/13)

UPDATE 3:59 PM EST: I forgot mention that ZERO of Dad's cultures from last week grew any bacteria. They have been culturing each area that could be suspect for infection with absolutely zero indication of infection. This is great news!

I just spoke to Dad, and he is very confused and entirely disoriented--he says that Allie joined the staff at the hospital and loves being a nurse (!) He told me he was eating soup, a loaf of bread, ice cream, a glass of milk, tea, jello and cole slaw. I called the nurse to follow-up and confirm that none of this was ingested--none of it was. She did mention that he was OKd for clear fluids--so he will have some tea or water and see how that goes.

The nurse says that Dad is always in a good mood and has a wide smile. He didn't sleep much last night and was hallucinating a lot.

They did take him of clonidine. Now he's on a mixture of two other BP meds.

That's all for now.

Adam

Tuesday - Update (6/12)

I know it's been almost a week since the last update, sorry for that.

Dad's brother spent last Friday, Saturday and Sunday morning with Dad. He mentions that he is still having hallucinations, which seem to get worse after he takes a drug to regulate his blood pressure: Clonidine is the drug. This frustrates me for two reasons: 1. The nurse tells me that he is no longer on blood pressure meds, yet he is on them!; and 2. Clonidine has known side effects that fit many of Dad's current conditions, so why is it a surprise to some doctor's why he is behaving the way he is? Craig mentioned that the doctor agreed to ween him off this drug to see if this affects Dad in any way.

His hemoglobin level is still 7, which is dangerously low. This has been this way for a long time.

Allie was down visiting him this past Sunday and left earlier today. She mentioned that he seems to be sharper lately, which seems like the waning the clonidine is helping (somewhat--he is still hallucinating although much more mildly). Allie says that Dad was making jokes while she was there, and he was watching some videos on the internet.

The transplant doc says his kidney is doing fine; he has good color. We just have to keep in mind that all this time spent in the hospital--even though he seems to be disturbed--he is continuing to heal. We hope he heals enough to get out sooner than later. He will remain in the hospital until the hole in his stomach closes (still not there yet).

He has sitters that remain with him throughout the day. They don't really do anything or know anything, but I'm sure it helps Dad to have some company (or some sort).

Our social worker is trying to locate an acute care facility for his transfer once Dad is discharged. Since none of these places exist in New York State, they are looking toward Erie for a facility that will accept him and his high care needs.

I will be going to Pittsburgh this Friday until Sunday to celebrate Father's Day with Dad. Looking forward to seeing his cleanly shaven face (Thanks, Allie!).

Thursday Afternoon - Update (6/7)

I was just called and notified that Dad made it out of surgery OK. They withdrew 15cc from his rear abdomen and 185cc from his liver area, and the doctors sent both samples off to culture. We won't know the results for two days.

The nurse mentioned that the fluid color did not indicate infection, visually determining infection by fluid is common. So we hope for the best, still!

Dad is back in his room, and didn't receive any types of sedation drugs whilst on the operating table. Go Dad--he's tough.

Adam

Thursday - Update (6/7)

The surgeon called to tell me that Dad needs two tubes re-inserted to his abdominal cavity--last night's CT scan showed a build up of fluid still near the rear of his lungs, and around his liver. The surgery to re-insert the drainage tubes around those areas is not very invasive and should only take 45 minutes to an hour.

Once they drain the fluid the doctors will determine if there is an infection. We'll wait to see and hope that there is no infection.

They do think his confusion may be caused by an infection of some sort. Maybe in his bladder; they are culturing some swabs to see. No information so far.

I called Dad yesterday and his speech and conversation was the worst it's ever been. He seemed far off in some other reality and I couldn't understand a damn word he said other than his repeated effort at saying, "I. FEEL. GOOD." Well, that was yesterday; so, we'll see if he feels BETTER after he gets some more fluid out of his gut.

After speaking with him, and hearing from other family members that he is still hallucinating, not speaking correctly, etc. I rang the nurse to very firmly re-iterate some points I shared with my grandfather earlier in the week: Scott must be stimulated, not just placed in a room moved from chair to bed, chair to bed. One of Dad's friend suggested to sit him outside (unfortunately, he is not allowed by his doctor). But his mind must can be stimulated by sitting him in front of a window instead of a wall. He hasn't been walking as much as he was last week (which is concerning)--it feels like his progress is regressing. I urged her to consider that the mind plays just as important of a role in recovery as the body, and I pressed this point with sternness.

We spoke to his nurse again this morning and it seems like the "pep-talk" had an effect, finally. She mentioned that Dad may have a permanent sitter in the room with him--to make sure he doesn't move around too much, and to help stimulate him. She also mentioned that before his surgery, they sat him in front of a window and he was enjoying it. They may also bring in a dog to help stimulate him. It sounds like they have a few options up their sleeves, and I'm glad they are using them!

His parents left late Tuesday night. Craig is heading back this weekend (Friday to Sunday), and Allie will be heading down Sunday afternoon to Tuesday. I will be there for Father's day that following weekend.

Adam

Monday - Update (6/4)

It's been a quiet week (hence the lack of updates). Dad was by himself for the past 5 days, which afforded him lots of time to catch up on his sleep.

Each time I spoke to him on the phone his speech was slurred, and it seemed to happen after they were playing with his blood pressure meds. Since then he has been sleeping much much more, and has been very "out of it" when he answers the phone.

His parents are with him now. They noticed that Scott has been hallucinating, quite frequently in fact. I knew that he had no concept of time, but he has been reaching for "real" objects that disappear when he is close to grabbing them. Like a cup of coffee or his laptop. The items are, in fact, not there at all, but he sees them, reaches for them, and they vanish. His father spoke to the floor doctor and brought her attention to this. She was concerned and would contemplate a brain scan to see what might be causing this. His hemoglobin level of 8 would NOT be culprit, she says. Scott is no longer on heart meds, only anti-biotics. So they do not know what might be happening (or happened), but at least they are aware of it now and they will continue to investigate. We hope it's just his tiredness and nothing more severe.

During this conversation, his father also asked a number of questions that I'm sure you each have on your mind, so here goes:

Q: Why does he still have 2 tubes in him?
A: One is for his incision, and the other is in his abdomen (which is draining fluid caused by the trauma of the surgery).

Q: Is there still a leak in his abdomen?
A: Yes, there is still a hole in his digestive system, where his stomach and small intestine meet. The healing time is much longer because of the anti-rejection drugs Scott is on (for his kidney transplant).

Q: When will he be given something to drink or eat?
A: Today, the nurses will give him some tea and see how he does with that (to see if there is any leaking).

Q: Will the hole close and heal?
A: Yes, but it will be at LEAST 2 WEEKS until it does. (this means Dad is stuck in PA for another 2 weeks).

Q: Will he heal entirely?
A: Yes.

Q: Will he recovery fully (mental, physical)?
A: Yes.

Q: Will he be able to process and digest whole foods eventually?
A: Yes.

So a mix of good news and just-ok news, but nothing bad. We wish he could be closer to us, but are thankful his family is willing to spend so much time away from home to visit him. If you have specific questions, feel free to comment on the blog or send me a note, and I'll get an answer for you as soon as I can!

Adam

Weekend / Memorial Day - Update (5/29)

Drum roll, please. Dad was given permission to eat some more popsicles over the weekend. And although they didn't taste as good as they did a month ago, it was better than nothing! The nurses used the popsicles not only to give Dad some extra calories, but also to test the healing in his stomach. See, the dye from the popsicle should end up ONLY in the stoma, and not in any of the 2 remaining drain tubes--that's exactly what happened, which means that the stomach/intestine connection is healing correctly.

The doctor's even think that solid food is on its way in a couple of days. Speaking of which, an update on the fungal infection they detected after his second surgery: they had him on a cocktail of antibiotics to help fight off the intestinal infection. They took him off the drugs and are waiting for another culture to see if the infection has gone.

Dad has also been walking around a couple times a day, making more and more progress with each day. Craig was with him his this weekend, and his parents will be traveling down this weekend. The doctor's are saying that he may be discharged soon, and when that happens he'll be on his way back to Rochester. He'll be much easier to visit when he's back here!

He's on some medication now that really disorients him, so it's hard chatting on the phone--he has a difficult time remembering simple things. Hopefully that drug is weaned down a bit as the days pass, and hopefully he'll be able to take some phone calls from those of you asking to speak with him!

More news to come,
Adam

Thursday - AM Update (5/24)

After 5 weeks of hospital time, Dad feels very discouraged and very dry. He knows he shouldn't, but it's hard to miss such nice weather and SUMMER! He is focusing on pushing himself to walk further and further each day, knowing that he cannot be discharged until he can walk on his own. Eating is another challenge (once he is allowed).

They gave Dad an EKG this morning to help diagnose the drop in pulse (it was usually 70-80 bpm, but was 55). One doctor (the transplant doc) said this was most likely due to his blood pressure medicine; they will work with him to find a better dose to prevent this in the future. The hemoglobin and hematocrit are low.

Dr. Ahrendt just stopped by and gave us an update: Dad looks to be 7-10 days out from being discharged. It's crazy to believe, but this discharge seems conditional. He'd be required to move in to a secondary care facility in Rochester--at least he'll be closer to friends and family! With his walking progress yesterday, the doctor feels that Dad will have enough energy to handle the 5 hour ride back to Rochester. His duration of stay in this new facility will depend on how fast he recovers his strength. He says, "I'm up for the challenge. My goal is to walk around my two-mile loop without stopping!"

The doctor also says that the two remaining drains looks good: the one hose (in his chest) is still draining fluid, which is caused by the inflammation near the diaphragm (this will dissipate once Dad moves around more and his heart can clear the excess fluid. The second hose is draining fluid from his stomach. Normally, his stomach is filled with bile and other digestive enzymes. Because the doctor wishes to have the stomach/small intestine connection as healed as possible, they will continue to drain his stomach of these fluids. This is why he cannot eat or drink anything until they see more healing around this area. But a good sign is that some of this fluid IS making it's way through his intestines--at least we know everything seems to be working.

He is still receiving TPN. He will continue to receive this form of nutrition until his stomach/intestine heals more.

I will be departing this afternoon, and Craig will be here tomorrow.

Adam

Wednesday - PM Update (5/23)

This afternoon Dad walked the furthest he's walked ever! Even though he said it was hard he looked good when he got back, and even stayed alert for hours afterward (he usually is so exhausted he passes out).

Dad and I played some cards, and watched some dirt biking videos.

Around 8pm he started sleeping heavily, and continued through the night. He experienced a big drop in pulse--they will look into this more tomorrow morning.

Wednesday - AM Update (5/23)

Dad has been sitting in his chair since 9am today! I brought him his laptop and he's been trying to work the darn thing. He says, "I can't remember any of my passwords, and don't know how to get on to my blog!"

He is waiting for his physical therapy (the daily walk around the floor). They tell him he won't be eating for another week or two (this includes water). They want him to heal more before introducing solid food or water.

He is still not accepting phone calls because he's "out of it". At least he's asking for his laptop, which will pre-occupy him when he's bored. Hey, who knows, maybe he'll figure out how to get back online and comment on how I'm doing with this blog!

I'll be here until tomorrow afternoon, and then Craig will arrive once again for the long weekend!

Adam

*Note: I was a few days behind, and was just able to publish 3 days worth of updates. Feel free to review them below!

Tuesday - Update (5/22)

Allie left today at 2 in the afternoon, and I arrived at 11:30pm. Dad was happy to see me, and we chatted for a bit before I went to my rented room. He was very upbeat, and of course happy to see me. I woke him up, which means he's been able to sleep better and be better rested.

Late last night the doctors removed one abdominal tube (two more to go!). He's been walking around, but his body is still extremely weak. He enjoys sitting in his chair, and does so for a several hours a day.

He doesn't have much pain. He has only a little nausea at night (most likely from the TPN).

I'll update more tomorrow!
Adam

Monday - Update (5/21)

As you may understand, Dad still has some tubes in him. There must've been some miscommunication that lead us all to believe they had removed all the tubes--unfortunately, this is not the case. He currently has 3 tubes: one in his chest and 2 in his abdomen. They did remove his catheter on Sunday.

Dad has been nauseous from time to time, and they suspect it has something to do with the amount of TPN they administer to his digestive system. Today, though his nausea is better.

His Potassium and Sodium levels are normal. Phosphate is 2.3 low (normal is 2.5). His hemoglobin was 8.1 on Saturday, but is now 9.1 (so that's better).

His Createnine is .07 (his normal has been 1.2).

As you all know, he has moved from the ICU to a special care unit, and private room (still 6109). The nurses are treating him quite well, and Dad is in better spirits each day.

Adam

Weekend - Update (5/20)

Allie has been spending time with her father, and the reports are good. Nothing out of the ordinary, other than hearing he doesn't want to be in the hospital any more.

Still no food or water at this point. He gets up and walks a few times a day, but not very far.

They did have to re-insert another drainage tube in his chest (more fluid build-up), and they rearranged another so that it would not scrape (possibly infect) his liver.

 Adam

Friday - Update (5/18)

Allie and I both talked with Dad yesterday and today. He certainly enjoys talking with us, but has a difficult time speaking loudly and clear. Even though an in-person visit would be best, a phone call does enough. He is still not taking calls from friends--he is too weak and sometimes incomprehensible.

I've been told today that Dad has tubes back in him. Fluid is building up in his abdomen again, especially near his liver. Tubes are no big deal at this point, but the risk of infection is greater.

He is still not allowed to drink, let alone eat. They are trying to exercise him but his body is pretty weak, and his muscles aren't yet used to physical exertion.

Allie is heading down this weekend on Sunday until Tuesday. I arrive Tuesday until Thursday. It'll be good to spend some quality hospital room time with him.

His hemoglobin is dropping down to the low 8.x, but all other levels seem OK.

Wednesday - Update (5/16) - 4 weeks later

28 days ago today Dad was under the knife, and even though he's had a lot thrown at him he seems to be coming through alright! And no better day than today to announce that Dad no longer has any tubes draining fluids from him!! He must feel very relieved; I know his family is.

The nurses have had him up and walking around today. I've tried calling him to chat but he's probably exhausted from the trip to and from the hallway.

His hemoglobin is at 9.6 (it's varying). He is still not allowed to drink anything, just sucking on wet sponges--how delicious. His major surgery incision looks healthy. His blood pressure and temperature also are in good ranges. Hopefully more good news to come!

Tuesday - Update (5/15)

Today, Allie mentioned that Dad had the other tube in his lung removed--which means his lungs are on a good road to recovery.

Allie gave Dad a shave today; he was looking pretty grizzly.

Nothing more to update today, things have been relatively quiet. I certainly don't mind not typing!

Adam

Monday - Update (5/15)

Not much to report today. Allie was spending a lot of time in Dad's room. He was very tired and slept on and off, and ultimately slept the majority of the day.

They changed his dressings and gave him some pain killers to help take the edge off. The thoracic team was deciding to remove one of the lung tubes--they remove his left lung tube. This is great progress!!

Dad really wants to get up and move around, but the team will not let him yet (too many tubes in him). I'll update more tomorrow when Allie returns home. This will mark the first time Dad will go many days without visitors.. So if you were going to send a card, now is the perfect time! I will make the trip again next week (Tue - Thrus).

Adam

Weekend - Update (5/13)

Allie is now with her father until Tuesday. His parents left Saturday morning. They removed one of his drainage tubes, and packed it with sterile gauze. This has been a very painful experience for Dad--he has been taking some pain medicine, which has made him sleepy. This wound will take a long time to heal, but we're happy the tube is out! The less, the better.

His lungs are inflating (as expected) from the tubes inserted a couple days ago. They may remove one of them tomorrow. They are assisting with clearing out the phlegm and fluid that has been building up over the past several weeks. If he walked around a bit more it'd clear on its own, but they are keeping him down because of his low hemoglobin levels. On Friday, his hemo was 7.5, and today (Sunday) it was 10. The way up is good.

They are not allowing Dad to suck on popsicles, only ice chips. He can't wait until he has permission to have something with some taste.

I'm sure Dad appreciates having Allie around for the next couple of days, then perhaps I'll make my way down there in the middle of the week.

Thursday Evening Update - (5/10)

They decided to insert one tube into each of Dad's lungs to help drain fluid. He now has two additional tubs in his chest. They took him down 2 hours ago, and he is still in the recovery room (with no updates).

More info to come,
Adam

Thursday - Update (5/10)

Dad is doing OK today. The doctors say they will need to transfuse a unit of blood for him: his white blood cell count is very low. They have him on IVs of drugs to stimulate his bone marrow, but they say it's not doing enough to raise his white blood cell count. 

The transfusion should take place today, and is low risk. His hemoglobin level is 7.5.

They are also considering inserting a physical drain in Dad's lungs. The doctors are not 100% set on this idea, but they need to drain the fluid from his lungs somehow.

Adam

Wednesday - Update (5/9)

Dad is doing well today and is enjoying his own room. His white blood cell count is a little low, but his platelets and hemoglobin are all very stable. His blood pressure is healthy, his fever is gone and the nurses are seeing such a huge improvement in him!

He and I chatted today, which tires him out a lot (I guess I have a lot to say!). But he seems in good spirits. He is still not allowed to sip water or chew ice chunks--he will have to wait to hear the results from the culture from the fluid drained from his abdomen Monday (they expect to have them tomorrow).

More information tomorrow,
Adam

Tuesday - Update (5/8)

Dad has been released from the ICU! He was out of his bed (finally!) and sitting in a chair for a couple hours today--he is extremely tired and rehab will hurt, but I'm sure he's happy to be out of that bed.

His parents are with him today through this week, and he is accepting mail again!

Room 6109 is his room #. He still will not be accepting calls.

Scott Carey
UPMC Passavant, Room 6109
9100 Babcock Boulevard
Pittsburgh, PA 15237

Monday Evening - Update (5/7)

Dad is out of the procedure, and he called me to tell me he was alright. The doctors sent samples of the fluid to be cultured, and will let me know when they have more information.

We spoke for about 15 minutes, and seemed optimistic. He's been in a bed for almost 3 weeks, which has left him pretty tired and weak. He doesn't know when he'll be released from the ICU, but hopes it is soon--he's eager to get back on his feet.

He was telling me where he wants to travel to when he gets out. But I think Rochester is a good first destination!!

Monday Afternoon - Update (5/7)

While changing Dad's dressings, the nurse noticed an atypical colored fluid around his sutures. They took another scan and found more fluid in Dad's abdomen and he is needing to have this drained. He is NOT going in for another surgery (which is a relief); instead, they will simply drain this fluid and send it off to the lab. The doctors fear that there is a significant infection that is causing this fluid build-up. Once they culture the results, they should know if the fluid is caused by an infection or if it's just a result from inflammation.

Results could take up to two days. He is getting the procedure done now; I will update the blog when I hear how it goes.

Weekend - Update (5/6)

Not much new to report on. Craig was with Dad all weekend, and was able to talk to him on and off. Dad slept quite a lot. When he was awake he would take a bit but had constant hiccups. These, you can image, really aggravated his incision and was jarring to his body.

Dad is still in the ICU and is still very weak. He called Allie today and she mentions that he sounds really good! Later this week (Tuesday) his parents will return to Pittsburgh to keep Scott company. At this point, I think that he just needs more time to rest up and get back on his feet.

He is still infected with a intestinal fungus which is very hard to get rid of. They have him on a number of meds to try to break this up--during this time he is considered very contagious. That's no fun!

Adam

Friday - Update (5/4)

Today was a really great day. Craig arrived, and told us that Dad had less fluid in his chest than previous days, so they removed one of his chest tubes (used for drainage).

He has been catching up on his sleep, and slowly coming back to reality (although it's very difficult so far away from home).

He currently has a temperature of 100.5--they are checking him over for any sign of infection or abnormality. Aside from that, he seems to be doing well they say, and continues to recover.

Adam

Thursday - Update (5/3)

More good news today. Dad called me up from the ICU! Which means that he is off his ventilator, and no longer intubated. I will say he is very very fuzzy and still confused (somewhat) as to what he's going through, but it was good to share a few words with him.

The fluid in his lungs is dissipating. His creatinine is 0.8!! No temp, and they will review several different cultures tonight to make sure he is free of infection.

There is still fluid around his lungs, which they are now blaming on congestive heart failure, but this is the first time I've heard the nurse mention that. Although, it may make sense that his heart cannot circulate enough O2-rich blood to the places he needs in order to heal. Regardless, he is still draining fluids from his chest, and continues to make progress. I would like to emphasize that he has NOT suffered a heart attack; also, that the ultra/echo sound on his heart two days ago revealed a strong-beating ticker!!


Craig will be with Scott over the weekend, and Dad was very pleased to hear that!

Wednesday Evening - Update (5/2)

I just spoke to the night nurse, and they mention that Dad is just as well as we had left him earlier today. He has been put on anti-biotic and anti-viral cocktails to help eliminate the fungal infection. Vitals still very stable, and his kidney is in great shape (his creatinine is 1.1).

We hope to continue to hear more good news tomorrow!

Adam

Wednesday Afternoon - Update (5/2)

The nurses told me that they identified a fungal "infection" in Dad's digestive system. The treatment for this is anti-biotics, which they are administering soon. Because it is considered an infectious disease, Allie and I are washing our hands regularly.

We've also been updated that his bicep pick went in alright, and it is providing the blood they need for continued tests and monitoring.

Adam

Wednesday Morning - Update (5/2)

Dad's condition hasn't changed much since last night. He is currently on his way to have the pick-line re-established in his right bicep. His blood pressure is still normal, blood oxygen and hemoglobin levels are good. Platelets are at 31, and white blood cells are around the same.

He is still intubated with the breathing ventilator, and is still being supported by the drugs and the machines he's hooked up to. Although, from time to time Allie and I have a chance to talk to him--only allowing to ask yes or no questions, but he knows who we are and that we are here for him. He squeezes our hand (after we yell at him a couple of times :), but it's good to communicate with him even this little bit.

Adam

Tuesday Afternoon - Update (5/1)

6 days ago the doctors took blood samples from Dad's pick line in his right bicep (an easier way to draw blood without stabbing him each time). Over this period of time, Dad's white blood cell count has been up and down--and when it is up it means his body is fighting an infection.

The doctor's believe that the pick-line may be the source of the infection (the cultures taken from the pick line are positive for infection, while culture taken from his hand are negative); so, Dad is on his way to have this line replaced. It should be a straight-forward procedure. Allie and I are leaving the hospital now, but will return later.

Quick update: Dad's platelet count was too low to make the swap, so they will wait until they speak with Dad's surgeon/doctor. Hopefully he gives permission to receive more platelets soon.

Adam

Tuesday Morning - Update (5/1)

Dad is back on the ventilator. A necessary step (even though its in the wrong direction). His blood pressure has normalized, but he still has a lot of fluid in his lungs. He has no fever and a relatively decent white blood count so pneumonia is not a threat.

The nurse here says that Dad will be on this ventilator for a few days, and will remain in the ICU for several more days after that, or until his lungs are clear. Of course, the time may be longer, or shorter--they are not sure. It's up to Dad's body to heal itself now; he's been through a lot.

I'll update again this evening.

Adam

Monday - Update (4/30)

After the second surgery, Dad had his NG tube replaced (through his nose, into his stomach). It is very uncomfortable. It was in when Allie and I arrived today, but was removed before we left late this night.

Dad was having some difficulty breathing, and had a nagging cough. I spoke to one of the doctors; he mentioned that there is a lot of fluid building up in his lungs. This began when he was taken off the respirator. It worsened after Allie and I arrived. Fluid in the lungs can be caused by a number of reasons; the primary reason for Scott is his high blood pressure. Tonight it maxed at 226/97, which could easily push fluids through the lung's thin membrane. The doctors are working to lower his BP, and was down to 187/77--still enough to prevent the fluid from draining out.

The doctor mentioned that there are a number of options if the lung fluid does not dissipate--one of which is for Scott to be put back on the ventilator. This would be a step in the wrong direction, but would allow his body to heal.

If the fluid lessens, they hope to move Scott to a personal room tomorrow and re-start physical therapy. 

He is still very groggy from him second surgery. We hope tomorrow is a better day.

Adam

Sunday - Update (4/29)

Not much to report, other than they removed Dad's ventilation tube. He is breathing on his own again! and he still has warm hands.

His brother left this morning, and the multiple unforeseen surgeries has left him pretty fuzzy. He called my sister today, and she and I are returning to Pittsburgh tomorrow to keep him company in the ICU.

Adam

Saturday Evening - Update (4/28)

The vascular surgery was successful; they removed the large clot in Dad's left arm, and have re-established the pulse in his hand/wrist. Good news!

More good news: his temperature has remained the same (normal) Dad's white blood cell count is on the rise! His body is fighting off his infection.

I cannot believe how strong his body is to endure such a struggle. He has been heavily sedated (once again), but as long as his body keeps fighting we couldn't be more relieved.

Adam

Saturday Afternoon - Update (4/28)

Yesterday, Dad's infection was still present, and raised his temperature to 100.7 +. Last night his temperature was down to 100.2, and this morning it was back to normal. I'm not sure if the infection has cleared, but it sounds as if his body is fighting it off.

In other news, Dad still responds to familiar voices and can answer questions with a head-nod; he is still heavily sedated, and cannot yet breathe on his own. Yesterday, he beckoned his brother to his side and pointed to his left arm. They discovered that he had a very cold hand, and it turned blue overnight. A warm compress helped increase circulation, but only temporarily.

Just 30 minutes ago, they identified a 3 to 4 inch long blood clot in an artery in his left arm. He is going into surgery now to have this clot removed. It should take 45 minutes, and the doctor should know if the surgery was successful right afterward.

Adam

Recovery - Update (4/27)

Dad is still recovering from his second surgery. He is very very medicated to increase his health (many IVs). As I mentioned yesterday, increasing his white blood cell count will truly help speed up his recovery. His medication is stimulating his bone marrow to produce more blood cells, platelets and white blood cells.

His currently on a respirator, and will be until Monday at the earliest (the intent here is to focus his body can recover his blood's volume). During that time, Dad will be heavily sedated and sleeping a lot.

When you call his name he can here you, and opens his blurry eyes, but cannot speak or communicate in anyway. I know it must be frustrating for him.

I should be a quiet weekend, knowing that he will not be able to move or breathe on his own.

Allie and I would like to thank everyone for their words of encouragement during this hard time.

Adam

Post-Surgery - Update (4/26)

Dad's doctor contacted me earlier today, and let me know how the emergency surgery went: They re-opened 2/3 of his original scar and looked for a possible leaking stomach. They were unable to identify a "hole" (even though they inflated the stomach to be sure) but suspected that one of the suture holes may have been seeping; so, the team re-inforced some of "connections" they made between the new half-stomach and the small intestines.

While the doctor was doing surgery, they noticed a green-ish membrane forming on Dad's organs. Because the doctor scraped many of these organs to rid them of the cancerous mucus, the membrane is most likely the result of his organs trying to heal themselves. But with his low level of white blood cells, Dad is unable to ward off some of these infections alone.

The doctor also installed a few more drainage tubes (for his chest), and another stomach drain. They will keep his stomach deflated for the next couple days until the new sutures heal. Once they do, it'll be a few more days until Dad can drink and eat again--hopefully, this time with no problem.

Scott is back in the ICU, and has been for the past 4 hours, and will be until late Saturday or Sunday (they say). He will remain on a respirator until they level out his vitals (blood O2 levels, blood pressure, pulse, white blood cell and platelet counts)--this may prove the most difficult task at the moment.

The doctor was not concerned with this second surgery. He noted that a lot of the other new "connections" looked healthy and were healing relatively well. We're all relieved that the surgery went without a hitch, and cannot wait until he know more...

Thank you for the many messages you've all sent. It is very inspiring to me to see how my father has touched all of your lives.

Adam

Another Unfortunate Surgery - Update (4/26)

Dad has taken a turn for the worse today. This morning he was very agitated and very dizzy. They discovered that his blood oxygen level was hovering around 80, when it should be 100; his white blood and platelet count are also extremely low. They re-admitted Dad to the ICU for the rest of today and tomorrow.

After preliminary scans of his chest and abdomen, the doctors found a small hole in his stomach. All of the fluids he has been ingesting have made their way into his abdominal cavity. A small infection has begun around the site of the opening. Upon discovering, this they immediately prepped him for operation.

Because Scott's vitals are so low, this makes surgery at this stage pretty dangerous; although they are doing their best to keep his body full of antibiotics. They also discovered more fluid near his lungs, which should not be there. They will need to re-insert the tube to remove excess fluid from around his lungs--but at this point, this is the least of their worries.

The surgery has begun, to Scott's full attention and acceptance, and will last 3 hours. The doctor is optimistic that this should be a quick and easy operation and that he will be lucid and talkative tomorrow morning. They will unfortunately have to re-open his suture wound on his abdomen (taking him back a week in the healing process). They will close the hole in his stomach, and stitch him back up.

I will be updated around 4:30 EST today, and will update the blog as soon as I am able. I will also send this out as an email for those that would appreciate an immediate update.

His parents are with him during this time, and are praying for him to come through this with no further complications. We're all pretty scared, but we remain hopeful.

Send your positive energy his way, please.
Adam

Recovery Day 7 - Update (4/25)

I can't believe it's been a week since Dad's surgery...

I must say that Dad was feeling great yesterday, but seemed a tired and more groggy today. He also seemed to be in more pain. He didn't sleep well (again), but was very eager to get out of bed and continue his laps around the hospital. His drive to get better can easily be seen in his enthusiasm to get back in shape!

Dad is loving the popsicles and water--he sounds better and can talk much longer than previous days. The doctor removed many tubes today--they removed a major drainage tube from his chest and his catheter. He says that it feels great to not have all that stuff hanging off of him when he walks and moves around in his chair/bed.

A lot of the morning Dad was tired and was in and out of naps. We checked in after we left, and he was chipper and talkative.

I left with him a print out of everyone's email and comments, and he is enjoying reading through them. He thanks everyone for their continued support.

Adam

Recovery Day 6 - Update (4/24)

Allie and I arrived around 1pm today, and surprised Dad! He was sitting in his chair, and was delighted to see his kids. He seems very tired; he hasn't really slept for the past 4 days. But, today he slept for several 30-minute intervals--he is all smiles about that!

We also watched as he took a short (but painful) walk outside his room and back--another great step (pun intended) in his recovery.

For the past 6 days, he's had what is called an NG tube stationed through nose and directed into his stomach; this provides major drainage of fluids from his stomach (typical after gastro surgery). It is a very painful tube to withstand as it causes discomfort in the nose, throat and esophagus. At one point, Dad managed to pull this out himself (when he was under the influence of some painkillers!), which meant the doctor had to put it back in (this was several days ago).

But today, the Doctor pulled the NG tube for good! Dad immediately felt better, could speak louder and was given permission to have POPSICLES! He smiled ear-to-ear when this was mentioned and so he, Allie and I enjoyed a round of orange popsicles. This, and permission to sip water, should help him gain back his strength quickly.

Allie and I will be here tomorrow, and we'll meet with Scott's parents (our grandparents) who will arrive around 3pm. I'll have more updates then. All-in-all, this was a great day full of progress.

Recovery Day 5 - Update (4/23)

Sound the horns! Dad has finally been moved from the ICU to his own room. This means he has a mailing address! It also means that he will now be able to rest a bit easier, and have more space to move around.

I called the hospital this morning I was happy to hear that they were arranging his transport to an in-patient room where he will remain for the rest of his stay at the hospital. After a final clearance from his doctor (and 3 unanticipated days in the ICU) they moved him to room 6118.

Once there, I made sure the phones worked. Dad picked right up; he seemed bright and lucid. We had a short talk, but he sounded better than the last time we spoke!  He is still very tired and can only talk for a few seconds at a time (he is not allowed to drink water). However, I would like to make it clear that Scott is not currently taking phone calls. Please do not contact him directly through the telephone.


But do feel free to send him your letters and gifts (if you have them ready and waiting--I know there are a few!). Here is his address:

Scott Carey
UPMC Passavant, Room 6118
9100 Babcock Boulevard
Pittsburgh, PA 15237
USA

Unbeknownst to him, Allie and I are driving back down to Pittsburgh tomorrow morning to visit. We're looking forward to seeing him healthier and in a better room. Hopefully this suprise winter (spring?) weather storm doesn't slow us down too much...

Cheers,
Adam

Recovery Day 4 - Update (4/22)

Dad had a better day today, says Craig and Cathie: he was sitting up very often and seemed to be more aware of his surroundings. Dad's mental temperament (amnesia-like episodes, confusion, disorientation, erratic behavior) is typical of someone who has undergone extensive surgery. It is likely that some anesthesia remains in his system, even now, 4 days later. Sedatives, pain killers and other IV medications can combine to have some very interesting side effects; all of which might be attributing to Scott's mental disposition.

Scott can not yet accept gifts--he is still in the ICU and has very limited space. Nurses are still concerned about his mental awareness, and they want to be sure he is "clear" enough to be on his own all day.

Craig mentioned that he is planned to be moved tomorrow to his own room. When he is in his own room, I will post the address of where he may receive letters. I must stress that at this point (and for the next couple weeks) he will not be able to ingest solid foods, let alone sweets--so, please don't tempt him! He is allowed few sips of water a day.

Tomorrow, Dad will most likely have a few "hoses" removed from him--a welcomed step in the right direction.

Scott's parents plan to visit in 3 days, so he will have company later this week. Our thoughts are still with him, and we'll check in twice daily with the ICU nurses until he finds himself a room of his own!

Adam

Recovery Day 3 - Update (4/21)

Allie and I made it home safely, and once home I called to see how Dad was doing. The head nurse at the ICU said that he was still disoriented, saying that he wants to go back to his flat! I said, "wouldn't you?!" He knows where he is and why he is in the hospital (for the most part), but he's not 100% yet.

Not too much to report for Saturday, April 21. Craig and Cathie arrived early in the morning to stay with Dad for the weekend. They mentioned that Scott received sedative to help him sleep through the night which he did, and seemed more rested when he woke.

The doctors removed his spinal block (which was providing 100% pain interference); this means now that Dad may have a bit more pain as the days go on. Craig made mention that he seems just as active and restless as when Allie and I were there.

The nurses helped him to his chair again today, and he took a few more assisted steps back and forth to his bed--it's good to see that his is still mobile!

Craig and Cathie are heading back to NY tomorrow, late morning, and will chat with them about Sunday's update.

(Sorry for the delay of this post!)
Adam

Recovery Day 2 - Update (4/20)

Dad had a restless night so he was very exhausted today. He's a bit confused about where he is, what he's doing here, and who the nurses are (but not who his kids are!).

He took his first steps out of bed and into a reclining chair, which is great progress! Tomorrow he's looking forward to moving from the ICU to his own room, where he'll be more independent and comfortable. His brother (Craig) and sister-in-law (Cathie) will be here tomorrow morning, and will keep him company through the weekend.

Allie and I will be taking off in a moment to return back to Rochester, but leaving a big metaphysical chunk of ourselves here with Dad so he can get through the night alright!

Scott still does not have a room number, mailing address or phone number as yet, but I will make sure to publish this information when I receive it. Thank you for keeping him in your thoughts, he brightens up each time I tell him of your messages and good words.

Adam

Recovery Day 1 - Update (4/19)

Dad is breathing on his own, and is able to communicate today--great news! Of course, he is very fatigued, as his body has been really put through a lot. But he's been smiling and laughing when he can.

He was able to sit up directly for a few minutes today, and we're looking for more progress tomorrow. The doctor's hope that he'll be able to sit and walk in a day or two, which would be most excellent. For now, he'll continue to sleep and gather is strength for tomorrow.

I was able to share with him your notes, messages and health-felt concern. Please keep him in your thoughts and check back tomorrow for more updates.

We're so thankful that he has no complications, that he looks healthy and that he still has his sense of humor: I asked, "Would you like to do the hokey-pokey?" he responded, "no, too many wires!"

Adam

Surgery Day 1 - Late Night Update (4/18)

It was a 15 hour surgery (the first patient in, and the last one out), but Dad pulled through! He is currently in the Intensive Care Unit (ICU), recovering from a long day. I just spoke with the surgeon who gave me the following update:

The surgical team removed his Gall Bladder, Spleen, the lower half of his stomach along with some Small Intestine, the Appendix, and some Large Intestine. Although this list seems extensive, the doctor assured us that Scott would be back to work after he has healed; the doctor also assured us that he might even be sitting up tomorrow and able to chat with us in the morning. Another positive thought: he'll never have to worry about Gall Stones!

It's about time that Allie and I call our 20-hr day quits! We plan to visit him tomorrow morning around 9am, and continue to visit when he has the energy for it. I will update with more information when I can.

Wishing our Dad a quick and safe recovery!
Adam

Surgery Day 1 - Evening Update (4/18)

Allie and I have been at the hospital with Dad for about 14 hours now, and we've finally just heard an update from the OR staff! They have begun the HIPEC solution profusion, which should last another 3:30 hours or so.

Although this is speculation, I am hopeful that this means good things! The HIPEC is used to remove any remaining cancer cells that might not have been visible by the surgeon and his team. At the least, the surgery seems to have been successful enough to administrate the HIPEC solution, which means he's healthy enough to receive it!

The day isn't over yet, though: Allie and I will meet with the surgeon post-operation tonight at 9pm to discuss the finer points of the long surgery. Until then we're going to stretch our legs and grab dinner, knowing that the hardest part of Dad's surgery is over.

We hope this news finds you well, and thank you to everyone for your kind emails and messages--I'll be sure that Scott receives them as soon as he's able to read (I'll have to give back his glasses first!)

Signed,
Adam

going forward...only my kids will be posting here

.... I do not plan on posting any more here for awhile. My kids have promised to post update on a daily basis here about what my days are like and how my time post surgery is going.

so stay tuned...

Surgery time on Wednesday

..got the call a bit ago; I need to be at the hospital at 5:00am on Wednesday
for an 8:00am appointment with "The Knife".

5:00am is SO early.. but that means it all should be done by 8:00pm tomorrow night.

Tuesday...

...met with the surgeon this morning. Good conversation. He was optimistic about the surgery and maintaining a good quality of life. Had three vaccinations due to the spleen being removed tomorrow: Meningitis vax, pneumonia vax and Hib vax. Had blood drawn for a type and cross for blood transfusions tomorrow, and have been on a liquid only diet today.

It is a beautiful day here today. Leaves are out more fully than in Rochester.

I am in good spirts. My kids are keeping me laughing.

A relaxing morning coffee....

Friends are kisses blown to us by angels. ~Author Unknown

Just this past Tuesday I finally found a great "European Style" cafe in Pittsford, and have found myself there almost every day since, either for coffee or lunch.

Today found me there again, in the warmth of a "summer" like morning. I sat outside at a small table enjoying a great cappuccino and thinking about all good things... friends, family, my children, special people in my life, conversations, life thoughts, and great quotations... It reminded me very much of my time in Prague...

Hospital info

Will be staying ....staying...an interesting a word;
really I should say: I will be watching TV at the following location.

UMPC Cancer Center at Passavant
9100 Babcock Blvd
Pittsburgh, PA 15237


email: when I can get to it = scarey3694@yahoo.com
but I don't expect to online for a week to 10 days...but who knows.

A few days to go

I was diagnosed In mid January 2012 with a form of cancer called Psuedomyxoma Peritonei or PMP. This cancer is called Psuedo because it stays isolated in the peritoneal cavity and does not enter the blood nor lymphatic system like most cancers, so in other words it does not spread outside of the peritoneal cavity.

It usually begins in the appendix and then escapes the appendix by bursting forth..."with the power of 10 billion butterfly sneezes" and then spreads along the walls of and onto the organs through-out the peritoneal cavity. The only course of action is surgery. There is NO IV chemo that is used to affect this cancer.

So I will be traveling to Pittsburgh, PA on Monday, the 16th, to prepare for surgery on the early morning of the April 18th, to remove as much of the cancer as possible, but with MY personal mandate to the surgical team of maintaining my quality of life. I wish no heroic surgical measures if only to rid my body of this cancer if it means my quality of life goes away.

The surgery is a quite extensive surgery called cytoreduction and debulking surgery along with a Hot chemo agent called Mitomycin C bath for the last two hours of the surgery. Normally, the surgery will entail stripping the walls and organs of the tumor, a sticky mucous type tumor. It usually means the removal of many organs, including the spleen, gall bladder, the ascending colon, mesentary and a fair bit of the small intestine. It is usual for this surgery to take between 12 & 14 hours

This blog was created ONLY in an effort to keep my friends informed of my progress post surgery. It will not be an ongoing saga of my course or outcome.

So my children will update this each day as they find out how I am doing way down in Pittsburgh...

I appreciate your support and prayers. I will hope to be back in Rochester by mid May. yes, I WILL be back at Home my Mid-May !

Cheers. - Scott