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