I spoke with Dr. A this morning and his prognosis of Scott was not good. Dr. A overviewed the ups and downs with his blood pressure, the persistant infection and fluid in his lungs, the presence of a sinus infection and his continued need for more platelets and plasma units.
Over the weekend, Scott's liver enzyme count remained at all-time high levels (around 38, it should be 1). Overnight his creatinine spiked to 1.8 and his kidney's urine output is only a couple 2-5cc an hour (normally 30 - 50cc).
Since Scott has been on "life support" (ventilator, tube feeds, saline and blood) for the past 4 weeks it's been difficult to see where he stands in this whole thing. The nurses have increased tube feeds to help stimulate the liver with no positive result. A couple weeks ago Scott was able to breathe on his own for a few hours at a time. They have attempted to ween him off oxygen with no positive result. Scott has been on every type of anti-biotic imaginable (expect for Penicillin, which he is allergic to) but his infections persist along with his high white blood cell count. Some of these anti-biotics are incredibly strong and can push additional strain on his liver and his kidney. What's truly discouraging is that today was the first day his kidney has been affected by all of this--the cancer, the initial surgery last year, the surgeries since and the multitude of drugs. Kidney failure is now a frightening possibility and one that Scott would not endure with a smile on his face.
It seems as though his circulatory and endocrine systems are slowing, along with his respiratory--all signs of a tiring body. We are frustrated that a solution to one system may compromise another.
Allie, myself and our mother are heading down this afternoon for the next day or two. During this time we will be meeting with the surgeons and other medical staff that have been keeping tabs on Scott for the past 4 - 12 months. His brother and sister-in-law will arrive tomorrow afternoon. We are certainly discouraged and worry about Scott's mental/physical well-being. It's difficult to find a sign of hope or improvement but we continue to remain as positive as we can.
Please continue to hold Scott in your thoughts and prayers these next few days.
Monday, March 11, 2013
Friday - Update (3/8)
Allie visited Dad last Friday (3/8) and mentioned that he slept most of the time and was very out of it. Over the course of the week the nurses update were that his number were up and down.
While there, Allie had a chance to discuss some items with the doctor. She mentioned they were administering blood pressure medication since his heart was not pumping hard enough. Over the weekend his BP numbers were up and down; sometimes regular, sometimes low.
Allie also noted that Dad is more brown than his yellow jaundice, which still points to continued liver failure and degradation.
She sat and read and held his hand while she sat next to him. She was there for just a day.
While there, Allie had a chance to discuss some items with the doctor. She mentioned they were administering blood pressure medication since his heart was not pumping hard enough. Over the weekend his BP numbers were up and down; sometimes regular, sometimes low.
Allie also noted that Dad is more brown than his yellow jaundice, which still points to continued liver failure and degradation.
She sat and read and held his hand while she sat next to him. She was there for just a day.
Weekend - Update (3/4)
Sorry for the delay in updates; it's hard to keep updating to say that Dad hasn't been improving from day to day. Over the past week Scott has had visitors from his brother and his father--they went down last weekend (3/2, 3/3). Their update was that Dad seemed more frail than ever. He slept most of the time. The nurse wakes him to ask questions and he responds with a head shake or nod. They are not sure if he is clear minded or not. He's been sedated for over a month, so who could blame him!
The liver is still not functioning well, if at all. His brother noted that he will have months of healing ahead of him, especially along his suture line, which is healing slowly.
Craig mentioned that he responds very positively to familiar voices, which we think helps the healing process.
His father mentioned that his white blood count numbers were still high, his liver numbers fluctuate but are still high, all other vitals are fluctuating so it's hard to determine a normal level for Scott at this time.
It's a short, week-old update. I'm preparing another now. Stay tuned.
The liver is still not functioning well, if at all. His brother noted that he will have months of healing ahead of him, especially along his suture line, which is healing slowly.
Craig mentioned that he responds very positively to familiar voices, which we think helps the healing process.
His father mentioned that his white blood count numbers were still high, his liver numbers fluctuate but are still high, all other vitals are fluctuating so it's hard to determine a normal level for Scott at this time.
It's a short, week-old update. I'm preparing another now. Stay tuned.
Friday, March 1, 2013
Friday - Update (3/1)
It's been almost 30 days since the last major surgery and Scott is hanging in there despite the many challenges his recover is faced with.
I just spoke with Dr. A who gave me the following updates:
Thanks to the tracheostomy Scott has been entirely off sedation since the beginning of this week. Although he's not quite "with it" he opens his eyes with the nurses and shakes/nods his head as often as he can. He seems to be in a lot of pain, the source of which remains to be known; could be his discomfort in a bed for 30 days, the trachea, something else or just the incision. The nurses administer pain killers when needed.
As for his incision, he still has a rather deep split toward the base of his sternum, and another (more aesthetic) half-way down his suture line. The wound seems to be healing, but slowly.
The reason for this slow healthy is cause by two main factors, which--to the doctor--are the only real obstacles Scott is facing right now: 1. Malnourishment, he needs calories to rebuild his body and get healthier; and 2. Liver functionality is critically poor.
So let's address point 1: they have been increasing his tube feeds quite steadily and have seen an increase in absorption in his cells from the calories and nutrients in the slurry. This is a good thing because Scott's GI tract seems to be ingesting the feedings, which increase nutrient levels in both blood, body and other cells. Dr. A mentioned that they will continue to increase tube feedings to help promote faster nourishment.
Point 2: the liver is very badly damaged, caused by the TPN feedings Scott was on for 6 months. Dr. A has never seen liver enzyme levels so high in any patient before, so this is a bit of unfamiliar territory for some of the staff at Passavant. His liver enzymes, which have been varying up and down (sometimes in the high teens, other times in the twenties), should be at 1. So anything above 1 is not good. The enzyme levels are measured when they seep from Scott's cells, the leaky cell is what causes jaundice. A main result when these enzymes seep from his cells is that his blood does clot as well as it should. So, Scott sometimes has light bleed in his GI tract, probably from his stomach (and other recently cut or irritated areas) but this is not a huge concern because it is related to a bad liver, not a bad stomach. The solution is giving Scott blood with healthy platelets and healthy liver enzymes that promote clotting, which stops the bleeding for a good amount of time. This doesn't happen often but one unit of blood was given last night.
Moving forward the doctor will begin to pull back anti-fungal and anti-biotic drugs that may impact liver function to help his liver kick back in action. Time will tell with this approach, as increase tube feedings hasn't improved liver function as anticipated.
They did mention earlier in the week they pushed 15 - 20 POUNDS of fluid from his body using diretics last week, after which he was able to practically breathe on his own for 6 hours. That was Wednesday, and he hasn't been able to breathe on his own again since but we're hopeful he just needs more strength.
The doctors are not overly concerned with Dad's current condition: he is stable, his other systems are stable (strong heart, regular BP, no fever, decreasing white blood cell count), his kidney is doing fine with a creatinine of 0.8, and he is moving about his bed. Not until other systems fail is there really a reason to worry; for now he is stable and simply needs time to recover. The increased feeds and decreased drugs should help. We should know more next week.
I just spoke with Dr. A who gave me the following updates:
Thanks to the tracheostomy Scott has been entirely off sedation since the beginning of this week. Although he's not quite "with it" he opens his eyes with the nurses and shakes/nods his head as often as he can. He seems to be in a lot of pain, the source of which remains to be known; could be his discomfort in a bed for 30 days, the trachea, something else or just the incision. The nurses administer pain killers when needed.
As for his incision, he still has a rather deep split toward the base of his sternum, and another (more aesthetic) half-way down his suture line. The wound seems to be healing, but slowly.
The reason for this slow healthy is cause by two main factors, which--to the doctor--are the only real obstacles Scott is facing right now: 1. Malnourishment, he needs calories to rebuild his body and get healthier; and 2. Liver functionality is critically poor.
So let's address point 1: they have been increasing his tube feeds quite steadily and have seen an increase in absorption in his cells from the calories and nutrients in the slurry. This is a good thing because Scott's GI tract seems to be ingesting the feedings, which increase nutrient levels in both blood, body and other cells. Dr. A mentioned that they will continue to increase tube feedings to help promote faster nourishment.
Point 2: the liver is very badly damaged, caused by the TPN feedings Scott was on for 6 months. Dr. A has never seen liver enzyme levels so high in any patient before, so this is a bit of unfamiliar territory for some of the staff at Passavant. His liver enzymes, which have been varying up and down (sometimes in the high teens, other times in the twenties), should be at 1. So anything above 1 is not good. The enzyme levels are measured when they seep from Scott's cells, the leaky cell is what causes jaundice. A main result when these enzymes seep from his cells is that his blood does clot as well as it should. So, Scott sometimes has light bleed in his GI tract, probably from his stomach (and other recently cut or irritated areas) but this is not a huge concern because it is related to a bad liver, not a bad stomach. The solution is giving Scott blood with healthy platelets and healthy liver enzymes that promote clotting, which stops the bleeding for a good amount of time. This doesn't happen often but one unit of blood was given last night.
Moving forward the doctor will begin to pull back anti-fungal and anti-biotic drugs that may impact liver function to help his liver kick back in action. Time will tell with this approach, as increase tube feedings hasn't improved liver function as anticipated.
They did mention earlier in the week they pushed 15 - 20 POUNDS of fluid from his body using diretics last week, after which he was able to practically breathe on his own for 6 hours. That was Wednesday, and he hasn't been able to breathe on his own again since but we're hopeful he just needs more strength.
The doctors are not overly concerned with Dad's current condition: he is stable, his other systems are stable (strong heart, regular BP, no fever, decreasing white blood cell count), his kidney is doing fine with a creatinine of 0.8, and he is moving about his bed. Not until other systems fail is there really a reason to worry; for now he is stable and simply needs time to recover. The increased feeds and decreased drugs should help. We should know more next week.
Monday, February 25, 2013
Monday - Update (2/25)
Scott did fine from the tracheostomy procedure last Friday, at least now the tube is no longer in his mouth.
After the surgery he seemed to be more agitated than ever. His brother noticed Scott experiencing more pain than usual--as did the doctors. To help him through this pain he was sedated again and restrained. This is the first time we think Scott has really felt serious "pain" during this entire experience. The tube in the mouth is discomfort, and the original surgery left him without much pain. However now, whether it be from the tracheostomy or the incision on his abdomen, he's feeling it.
I just spoke with the nurse who gave me updates that all of Scott's numbers are stable, meaning they haven't been changing one way or the other--it didn't sound like there was any concern.
The doctor's have increased his tube feeds to help stimulate his liver and promote absorption. His stool is getting thicker, which is a good sign that his body is receptive to the fiber and tube feed increases. Still no update on his liver, which is now (and always has been) considered liver failure (there was never any virus that caused the jaundice--it was simply due to TPN damage). His brother and daughter both say his color is getting better.
The incision on his abdomen does not seem to be pulling apart, and the surgeon thinks the healing is going well otherwise. He is currently restrained and heavily sedated to decrease a movement that might aggravate his incision. He does move around a bit, but the medication is used to allow the body to heal.
For now he remains sedated, restrained and in some pain. Stable otherwise.
He's almost at week 4 in the ICU, the longest he's spent here.
After the surgery he seemed to be more agitated than ever. His brother noticed Scott experiencing more pain than usual--as did the doctors. To help him through this pain he was sedated again and restrained. This is the first time we think Scott has really felt serious "pain" during this entire experience. The tube in the mouth is discomfort, and the original surgery left him without much pain. However now, whether it be from the tracheostomy or the incision on his abdomen, he's feeling it.
I just spoke with the nurse who gave me updates that all of Scott's numbers are stable, meaning they haven't been changing one way or the other--it didn't sound like there was any concern.
The doctor's have increased his tube feeds to help stimulate his liver and promote absorption. His stool is getting thicker, which is a good sign that his body is receptive to the fiber and tube feed increases. Still no update on his liver, which is now (and always has been) considered liver failure (there was never any virus that caused the jaundice--it was simply due to TPN damage). His brother and daughter both say his color is getting better.
The incision on his abdomen does not seem to be pulling apart, and the surgeon thinks the healing is going well otherwise. He is currently restrained and heavily sedated to decrease a movement that might aggravate his incision. He does move around a bit, but the medication is used to allow the body to heal.
For now he remains sedated, restrained and in some pain. Stable otherwise.
He's almost at week 4 in the ICU, the longest he's spent here.
Friday, February 22, 2013
Friday - Update (2/22)
Scott has been on the ventilator for almost 3 weeks (with a day or two when he was off it just after the initial surgery). There is a risk when the ventilator has been in place for longer than 2 weeks inthat the tube could damage the vocal chords. Not only that but Dad has been mildly to heavily sedated over this 3 week period as well, and that takes a toll on the mind and body.
That being said, Scott's going back into surgery today. He will have a procedure known as a tracheostomy, which we consider a good thing. It will be done at 11:30 EST. The benefits of this surgery will be:
That being said, Scott's going back into surgery today. He will have a procedure known as a tracheostomy, which we consider a good thing. It will be done at 11:30 EST. The benefits of this surgery will be:
- no tube in Scott's mouth and vocal chords
- less, to no, sedation since the tube will no longer be present
- the ventilator tube will be inserted beneath his larynx
- he will be able to speak again
- he will be able to drink again (when permitted)
- he will be able to eat again (when permitted)
Since he is already intubated and sedated there is little risk with this surgery and should take 20 minutes.
Now onto other updates:
The doctors have found more blood in Scott's stool, some in/around his G/J feeding tube, and the other day Dad threw up blood. They have been administering plasma and platelets as needed.
The GI docs think it might be an old clot that just broke up, but other are worried it might be something else. They want to scope the GI tract but I have not heard back on that yet. Yesterday they said the tracheostomy was no longer an option because of the blood, but they are moving forward with this today. Getting some mixed signals, but we hope this quick surgery is enough to wake Scott up and keep him more aware and lively!
Allie was down on Wednesday and Scott's brother is heading down today, returning Saturday.
Wednesday, February 20, 2013
Wednesday - Update (2/20)
Scott remains intubated and continues to very slowly recover from last week's surgery (AND the surgery a week and half before that!). His progress is brief and not without setbacks, which is discouraging. Being intubated requires sedation, which is has been receiving for almost two weeks now and he's non-responsive most of the time.
Since being on the ventilator stresses the body in many ways the surgeons are considering a tracheostomy to remove the ventilator tube, which will allow the vocal chords to reflex and heal; it will also allow him to be less sedated and begin to take water (food, too if/when permitted) and to talk. The procedure will insert a breathing tube below his voice box in his neck, and once better should heal up just fine.
In the meantime Scott's sedation has been reduced from time to time to see how he can breathe on his own. Although he is able to breathe on his own, it is too rapid and shallow to remain unassisted. This rapid breathing also points to possible infection (along with supporting white blood cell count and a fever). The doctors do not know what might be infected (Scott is already on 5 very strong antibiotics)--today is the first fever he has had since admittance.
They have discovered a thin trace of blood in his stool, which they are not concerned about since it is not much. By administering additional platelets and plasma whatever might be bleeding (most likely sutures) should clot and heal on their own.
His wound, which was sewn entirely shut has begun to split--to the size of a quarter--right underneath his sternum. The doctors hope the tear doesn't continue, but for now this will have to heal on its own. Right now the biggest concern is infection.
They have ordered Scott receive another CT scan this afternoon and will know the results soon to determine if fluid is increasing in his lungs or decreasing, or if there is an abscess in his abdomen or other localized area.
The doctor said Scott's recovery has been and will continue to be "horizontal"--whatever that means.
Allie is there with him today and will come back tonight. His brother plans to visit this weekend.
Since being on the ventilator stresses the body in many ways the surgeons are considering a tracheostomy to remove the ventilator tube, which will allow the vocal chords to reflex and heal; it will also allow him to be less sedated and begin to take water (food, too if/when permitted) and to talk. The procedure will insert a breathing tube below his voice box in his neck, and once better should heal up just fine.
In the meantime Scott's sedation has been reduced from time to time to see how he can breathe on his own. Although he is able to breathe on his own, it is too rapid and shallow to remain unassisted. This rapid breathing also points to possible infection (along with supporting white blood cell count and a fever). The doctors do not know what might be infected (Scott is already on 5 very strong antibiotics)--today is the first fever he has had since admittance.
They have discovered a thin trace of blood in his stool, which they are not concerned about since it is not much. By administering additional platelets and plasma whatever might be bleeding (most likely sutures) should clot and heal on their own.
His wound, which was sewn entirely shut has begun to split--to the size of a quarter--right underneath his sternum. The doctors hope the tear doesn't continue, but for now this will have to heal on its own. Right now the biggest concern is infection.
They have ordered Scott receive another CT scan this afternoon and will know the results soon to determine if fluid is increasing in his lungs or decreasing, or if there is an abscess in his abdomen or other localized area.
The doctor said Scott's recovery has been and will continue to be "horizontal"--whatever that means.
Allie is there with him today and will come back tonight. His brother plans to visit this weekend.
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