I wish I could say that E. was able to enjoy a big Thanksgiving feast of turkey and all the fixings, but that was not the case. He had a few bites of a quesadilla for breakfast, a couple of sips of an Ensure for lunch and that was about it. He watched a bit of the parade and opened his eyes for football now and again. In spite of all that, he was glad to be home.
Even before E. went into the hospital, I had a feeling that cooking a big Thanksgiving meal might not work out so well and wound up ordering pre-made turkey and ham meals (along with all the sides) from Raley's. (Those of you that know E. and know how much he likes to cook, can imagine how this didn't sit well with him.) A big shout out to Morgan for heating everything up and making Thanksgiving dinner happen ... it actually was all super yummy!
And just to share a funny conversation I had with Peanut when he crawled into bed with E. and I this morning:
Me: "Peanut, today is Thanksgiving and we have lots of things to be thankful for. What are you thankful for?"
Peanut: "Corn."
Me: "Corn???" What? Like popcorn? Or regular corn?"
Peanut: "Just regular corn."
Me: "That's nice. Anything else?
Peanut: "No. Just corn."
Me: "Well, I'm thankful for you. And I'm thankful that daddy is home from the hospital. How about you."
Peanut: "I'm thankful for corn. I really like corn."
So there you have it. We all have to be thankful for something. And Peanut is thankful for corn. (Shut it Amy and your "Secret Love of Corn Society." There is something wrong with you people. Haha.)
Thursday, November 22, 2012
Wednesday, November 21, 2012
Home
By the time I got to the hospital this morning, I once again missed the GI doctor. According to E., the GI doctor signed off on his discharge and we then just needed the Internal Medicine doctor to sign off as well. We waited and waited and waited. E. was getting grumpier with each click of the clock. She finally made her rounds in the late afternoon and agreed to discharge E. with Home Health in place. She ordered a nurse, a certified nursing assistant, physical therapy and occupational therapy. E. didn’t think any of it was necessary, but I was especially glad to hear about the nursing care. If nothing else, a nurse can offer IV hydration, which I think will be a huge help. E. seems to think he can drink enough by mouth, but I don’t agree. The nurse can also collect labs. Considering E. went through four IV’s in his short hospital stay, we discussed the possible need for a picc line or a port. We’ll have to discuss this further with his primary care doctor. The funniest thing to me was when E. argued against physical therapy, stating that he would instead just go to the gym and work out. Now, those of you that have seen him in the last few weeks, know that that there is no way he is going to be going to the gym any time soon, even for a visit, let alone to work out. When the doctor suggested that the CNA could help him with showers, E.’s facial expression said it all. She caught on quickly and revised her initial statement by saying that the CNA could offer his wife suggestions of how she could help him with showers and other daily tasks. Haha.
It took awhile to get IV’s disconnected, discharge papers filled out, prescriptions written and a wheelchair delivered. We were finally out the door and still had to stop at the pharmacy. The first order of business at home was a nice, long, hot shower. Toothbrush, toothpaste, lotion, deodorant, lotion, pajamas and back in bed by 8:00 p.m. Ahhhh, home sweet home.
So thankful.
Tuesday, November 20, 2012
Regular Room
When I got to the hospital this morning, E. was sitting up in a chair, trying to eat some "cream of crap." He had some great color and just seemed to be doing better overall. Even his voice seemed stronger. We had several longer conversations, rather than the short choppy question and answer sessions that he has typically been having. When it was time to take a walk, E. pushed the wheelchair around the nurses' station twice. He was more stable on his feet that he has been in weeks. It was a huge improvement. I think he tuckered himself out though, because he didn't last much longer in the chair before he was back in bed and dozing on and off again. His voice was back to being weak and raspy, and conversation was minimal again.
I missed the GI doctor, but E. claimed that the GI doctor said everything looked good on the Upper GI. God bless the man, but he doesn't always get the information right, so I was hoping to track down the GI doctor myself. I never did find the GI doctor, but the Internal Medicine doctor came in and confirmed that all looked good on the Upper GI. There didn't appear to be any obstructions. E. was given clearance to begin a regular diet and try to eat whatever he wanted to try. She was concerned that he hasn't been nor is he eating enough. She thought that E. might get to go home tomorrow, but the GI had thought maybe the next day so I'm not sure who will win out. They served chicken, rice, vegetables and a roll for lunch. E. ate about 6 or 7 bites of chicken and probably half of the roll. It was very difficult though and he had a tough time getting it down. Afterwards, he was nauseous and had to take some anti-nausea medication.
There was some confusion if E. could move to a regular room or not. Because of that IV medication that E. is on that helps stop/prevent internal bleeding, hospital policy sometimes dictates that patients need to remain in ICU to be monitored (policy seems to change monthly). It was finally confirmed that E. could be moved to a regular room, but his heart would need to be monitored via a telemetry unit. Turns out, he was going to a room on the fourth floor and not the oncology unit after all. We had to wait several hours for a bed to finally open up. As they wheeled him down the hall to his new room, we passed numerous empty rooms and vacant beds on both sides of the hall. I'm not sure what exactly the hold up was, or if they just wanted to make sure E. had an extra special room. Because boy was Room #405 "special."
Room #405 was a tiny room. A tiny room with two beds. A tiny room with two beds and no chairs. A tiny room with two beds and no chairs and a roommate. A tiny room with two beds and no chairs and a roommate with dementia. I found two chairs to drag in and wedge between the foot of the bed and the bathroom for E.'s dad and myself, but had to move them every time dementia roommate had to use the restroom (like every 10 minutes) or whenever a nurse came in. Dementia roommate kept getting in and out of bed and wandering around the room, striking up conversation. He kept telling me how he worked there, while his hospital gown kept flapping in the breeze (yes, I got flashed repeatedly). He'd been on this job for 18 days and finally got the light in this place working. He wanted to search through E.'s bags because he couldn't find his tools. He kept asking me for his next job and for the schedule. I didn't know what to do, so I played along and I asked him if he ordered all the parts already. We had quite the conversation about the jobs that were lined up to do. He wasn't happy with the schedule I had worked out though because he had to get to L.A. for his next job. The entertainment value wore out after about 20 minutes. E. slept through it all. Or pretended to sleep through it all. Grandpa didn't have his hearing aids in so missed most of the fun. Eventually, I could take it no more and strolled down to the nurses' station. After chatting with a few people, E. was transferred to a private room down the hall.
E.'s been having some trouble with his IV's. His right arm is completely shot. He's got so much scar tissue there (from chemo, past infiltrated lines, cellulitis, blood clots, etc.), that no blood can even be drawn from that arm. He's now on his third IV on his left arm and it just went bad tonight too, so they're going to have to start yet another one. He cringes every time the lab shows up to draw blood and I immediately go on the defensive. Oh, the advantages of having a picc line or a port.
Dinner looked tasty, but one bite told E. otherwise. It had bell peppers in it and those of you who know E., know how much he despises bell peppers. E. requested a peanut butter and jelly sandwich instead, but one couldn't be found. The nurse did find a turkey sandwich instead, so E. got a bit of that down. Hopefully he'll get a decent night's sleep. We're both crossing our fingers that he'll be discharged tomorrow, or the next day at the latest so he can be home for Thanksgiving.
(P.S. Today's bilirubin level was back at a 3.8.)
I missed the GI doctor, but E. claimed that the GI doctor said everything looked good on the Upper GI. God bless the man, but he doesn't always get the information right, so I was hoping to track down the GI doctor myself. I never did find the GI doctor, but the Internal Medicine doctor came in and confirmed that all looked good on the Upper GI. There didn't appear to be any obstructions. E. was given clearance to begin a regular diet and try to eat whatever he wanted to try. She was concerned that he hasn't been nor is he eating enough. She thought that E. might get to go home tomorrow, but the GI had thought maybe the next day so I'm not sure who will win out. They served chicken, rice, vegetables and a roll for lunch. E. ate about 6 or 7 bites of chicken and probably half of the roll. It was very difficult though and he had a tough time getting it down. Afterwards, he was nauseous and had to take some anti-nausea medication.
There was some confusion if E. could move to a regular room or not. Because of that IV medication that E. is on that helps stop/prevent internal bleeding, hospital policy sometimes dictates that patients need to remain in ICU to be monitored (policy seems to change monthly). It was finally confirmed that E. could be moved to a regular room, but his heart would need to be monitored via a telemetry unit. Turns out, he was going to a room on the fourth floor and not the oncology unit after all. We had to wait several hours for a bed to finally open up. As they wheeled him down the hall to his new room, we passed numerous empty rooms and vacant beds on both sides of the hall. I'm not sure what exactly the hold up was, or if they just wanted to make sure E. had an extra special room. Because boy was Room #405 "special."
Room #405 was a tiny room. A tiny room with two beds. A tiny room with two beds and no chairs. A tiny room with two beds and no chairs and a roommate. A tiny room with two beds and no chairs and a roommate with dementia. I found two chairs to drag in and wedge between the foot of the bed and the bathroom for E.'s dad and myself, but had to move them every time dementia roommate had to use the restroom (like every 10 minutes) or whenever a nurse came in. Dementia roommate kept getting in and out of bed and wandering around the room, striking up conversation. He kept telling me how he worked there, while his hospital gown kept flapping in the breeze (yes, I got flashed repeatedly). He'd been on this job for 18 days and finally got the light in this place working. He wanted to search through E.'s bags because he couldn't find his tools. He kept asking me for his next job and for the schedule. I didn't know what to do, so I played along and I asked him if he ordered all the parts already. We had quite the conversation about the jobs that were lined up to do. He wasn't happy with the schedule I had worked out though because he had to get to L.A. for his next job. The entertainment value wore out after about 20 minutes. E. slept through it all. Or pretended to sleep through it all. Grandpa didn't have his hearing aids in so missed most of the fun. Eventually, I could take it no more and strolled down to the nurses' station. After chatting with a few people, E. was transferred to a private room down the hall.
E.'s been having some trouble with his IV's. His right arm is completely shot. He's got so much scar tissue there (from chemo, past infiltrated lines, cellulitis, blood clots, etc.), that no blood can even be drawn from that arm. He's now on his third IV on his left arm and it just went bad tonight too, so they're going to have to start yet another one. He cringes every time the lab shows up to draw blood and I immediately go on the defensive. Oh, the advantages of having a picc line or a port.
Dinner looked tasty, but one bite told E. otherwise. It had bell peppers in it and those of you who know E., know how much he despises bell peppers. E. requested a peanut butter and jelly sandwich instead, but one couldn't be found. The nurse did find a turkey sandwich instead, so E. got a bit of that down. Hopefully he'll get a decent night's sleep. We're both crossing our fingers that he'll be discharged tomorrow, or the next day at the latest so he can be home for Thanksgiving.
(P.S. Today's bilirubin level was back at a 3.8.)
Monday, November 19, 2012
Grumpy
A different GI doctor made rounds this morning. He said he reviewed the procedure and case notes of his partner, as well as E.'s labs. It looked to him like the bleeding was under control since E. hadn't vomited any more blood and the labs (specifically, his H & H) were looking good. He said that it wasn't clear if the bleeding was coming from the esophageal varice or from the mass. He actually said that it would be better if the bleeding was from the varice rather than from the mass as it would be less likely to bleed again. If the bleeding was coming from the mass, it could start bleeding again at any time without warning. (Yet after reading a bit on the internet, it sounds as if once you have a bleeding esophageal varice, you are prone to more bleeding esophageal varices.) Either way, bleeding varices and masses don't sound good.
They gave E. some a medication to stimulate his appetite today called Megace. He managed to eat a small container of pudding before they informed him that he was scheduled for an Upper GI at 7:00 tonight (now postponed to 8:30 or 9:00 pm) and was allowed nothing more to eat or drink. So much for that! They increased the IV fluids as they are concerned about the low output. Despite the high volume of hydration they've already pumped into E., he's only peed a very minimal amount. I'm hoping this is only due to the fact that he was so dehydrated and once he gets caught up, input and output will be more proportional to each other.
The Internal Medicine doctor is concerned that there might be an obstruction affecting his eating, which is why she ordered the Upper GI. The concern is that the mass in the small intestines (at the base of the stomach) has possibly grown larger, thereby blocking food from going any further. So, for today's Upper GI, E. will drink some Barium (a thick, chalky white substance) and then they'll take a series of x-rays as they watch it move through his system.
E. dozed on and off throughout the day. He grimaced in pain frequently, but will no longer even tell me what his pain level is on the pain scale because he is sick of me suggesting pain medication. He's taken none today. He's watching a little Monday Night Football, excited to see local UNR boy Colin Kaepernick as the starting quarterback. His bilirubin went UP from 3.8 yesterday to 3.9 today. Not up a lot, but still the wrong direction. It sounds like he may get to move to a regular room on the oncology floor tomorrow. He's very sick of being in the hospital and getting quite grumpy about it. Grumpy is good. It means he's still full of piss and vinegar. We can work with that.
They gave E. some a medication to stimulate his appetite today called Megace. He managed to eat a small container of pudding before they informed him that he was scheduled for an Upper GI at 7:00 tonight (now postponed to 8:30 or 9:00 pm) and was allowed nothing more to eat or drink. So much for that! They increased the IV fluids as they are concerned about the low output. Despite the high volume of hydration they've already pumped into E., he's only peed a very minimal amount. I'm hoping this is only due to the fact that he was so dehydrated and once he gets caught up, input and output will be more proportional to each other.
The Internal Medicine doctor is concerned that there might be an obstruction affecting his eating, which is why she ordered the Upper GI. The concern is that the mass in the small intestines (at the base of the stomach) has possibly grown larger, thereby blocking food from going any further. So, for today's Upper GI, E. will drink some Barium (a thick, chalky white substance) and then they'll take a series of x-rays as they watch it move through his system.
E. dozed on and off throughout the day. He grimaced in pain frequently, but will no longer even tell me what his pain level is on the pain scale because he is sick of me suggesting pain medication. He's taken none today. He's watching a little Monday Night Football, excited to see local UNR boy Colin Kaepernick as the starting quarterback. His bilirubin went UP from 3.8 yesterday to 3.9 today. Not up a lot, but still the wrong direction. It sounds like he may get to move to a regular room on the oncology floor tomorrow. He's very sick of being in the hospital and getting quite grumpy about it. Grumpy is good. It means he's still full of piss and vinegar. We can work with that.
Sunday, November 18, 2012
Stable
E. is stable. He is doing well. He's had visitors trickle in and out all day long. They witnessed various moods and expressions throughout the day ... a little bit of loopiness, some grimaces of pain, a bit of orneriness thrown in for good measure, a dash of normalcy and a whole lot of sleepiness.
The GI doctor came in and did the scope first thing this morning. They actually brought the procedure to E. rather than bringing E. to the procedure. They wheeled a big cart with all the equipment right into E.'s room in the ICU and did the endoscopy right there. Pretty impressive. I waited in the waiting room, but returned after about 45 minutes. The doctor explained that he found one bleeding esophageal varice (you might recall that E. was found to have esophageal varices in the endoscopy done on November 1st). An esophageal varice is an abnormal, enlarged vein (like a varicose vein in the esophagus) that most often occurs in people with serious liver diseases. They develop when the normal blood flow from the liver is slowed. The blood then backs up into nearby smaller blood vessels (like those in the esophagus) causing them to swell. Here's the kicker: sometimes those esophageal varices can rupture causing LIFE-THREATENING bleeding. Glad I didn't know that yesterday. Anyways, the GI doctor used an elastic band (like a rubber band he said) to tie off the bleeding vein. Basically the vein gets "strangled" so it can no longer bleed.
The GI doctor said that the stomach and the entire digestive tract was inflamed, swollen and irritated. There were possibly other areas where bleeding was occurring as well, but he thinks that the esophageal varice was the main one. E.'s on a host of different medications, including a medication that slows the flow of blood from the organs to the portal vein, which reduces the pressure in the vein. All this will hopefully stop any internal bleeding that might still be occurring.
While the doctor was in there checking things out, he checked on the stents. The bile duct stent was still in place and doing the job it was supposed to. The stent in the pancreas (the one that was put there as a detour and we were hoping would slide out on its own) was still there as well, so the doctor went ahead and removed it. E. tolerated the procedure well, but was out of it for quite awhile afterward.
E.'s still resistant to take any pain medication, despite cajoling from others. He often grimaces in pain, but claims "it's not THAT bad." The nausea seems under control, yet he still has no appetite. Today, he took a total of two bites of pudding and one sip of soup. They are going to try to start him on a medication to stimulate his appetite to see if that might do any good. The nurse thought she might suggest a discharge for tomorrow or the next day, but when I ran into the doctor, she thought she might move him to a regular room tomorrow or the next day. Either way, he is clearly improving so that is good.
Oh, and on another good note, his bilirubin level today was 3.8!
The GI doctor came in and did the scope first thing this morning. They actually brought the procedure to E. rather than bringing E. to the procedure. They wheeled a big cart with all the equipment right into E.'s room in the ICU and did the endoscopy right there. Pretty impressive. I waited in the waiting room, but returned after about 45 minutes. The doctor explained that he found one bleeding esophageal varice (you might recall that E. was found to have esophageal varices in the endoscopy done on November 1st). An esophageal varice is an abnormal, enlarged vein (like a varicose vein in the esophagus) that most often occurs in people with serious liver diseases. They develop when the normal blood flow from the liver is slowed. The blood then backs up into nearby smaller blood vessels (like those in the esophagus) causing them to swell. Here's the kicker: sometimes those esophageal varices can rupture causing LIFE-THREATENING bleeding. Glad I didn't know that yesterday. Anyways, the GI doctor used an elastic band (like a rubber band he said) to tie off the bleeding vein. Basically the vein gets "strangled" so it can no longer bleed.
The GI doctor said that the stomach and the entire digestive tract was inflamed, swollen and irritated. There were possibly other areas where bleeding was occurring as well, but he thinks that the esophageal varice was the main one. E.'s on a host of different medications, including a medication that slows the flow of blood from the organs to the portal vein, which reduces the pressure in the vein. All this will hopefully stop any internal bleeding that might still be occurring.
While the doctor was in there checking things out, he checked on the stents. The bile duct stent was still in place and doing the job it was supposed to. The stent in the pancreas (the one that was put there as a detour and we were hoping would slide out on its own) was still there as well, so the doctor went ahead and removed it. E. tolerated the procedure well, but was out of it for quite awhile afterward.
E.'s still resistant to take any pain medication, despite cajoling from others. He often grimaces in pain, but claims "it's not THAT bad." The nausea seems under control, yet he still has no appetite. Today, he took a total of two bites of pudding and one sip of soup. They are going to try to start him on a medication to stimulate his appetite to see if that might do any good. The nurse thought she might suggest a discharge for tomorrow or the next day, but when I ran into the doctor, she thought she might move him to a regular room tomorrow or the next day. Either way, he is clearly improving so that is good.
Oh, and on another good note, his bilirubin level today was 3.8!
ICU
E. hasn't been feeling great. That's probably a pretty big understatement. The pain level is creeping up. The nausea is creeping up. The general misery is creeping up. He's not eating. He's not drinking. He's not doing much. After jumping through a bunch of hoops, I was able to make him an appointment with palliative care for Wednesday, because whatever they've got up their sleeve, it's got to be better than this.
He spent all Friday throwing up. He kept nothing down. We tried some toast. Up it came. We tried some Ensure. Up it came. I gave him some Zofran (anti-nausea meds) and waited. Then we tried some Ensure again. Up it came. Nothing, and I mean nothing, stayed down. It looked like brown bile, so we both thought maybe it was a good thing. Maybe some of that bile was coming up and out. Maybe it would bring that bilirubin number down.
Saturday, it seemed like he was feeling better. Then he began throwing up again. As I went to pour out the puke bucket, I noticed the color wasn't brown, but dark red. And it was filled with clots. Like lots of little chicken livers. I looked closer. Yup, blood. I quietly said to E., "I think we might need to head to the hospital because you're throwing up blood," and the man who usually fights and argues about anything medically related began to look for his shoes without another word. (In hindsight, I'm now wondering if he wasn't throwing up blood yesterday as well.)
By the time we reached the Emergency Room, his pain level was topping an 8. I got him into a wheelchair and they were able to triage him immediately and get us straight back into a room. Unfortunately, they could give him nothing until he was seen by a doctor and that took a while longer. Eventually they ran some labs on him (his bilirubin is STILL a 5.8! but he's not anemic yet which means he hasn't lost too much blood). He began throwing up in the E.R. and the color was then a brighter red, whatever than meant. They were able to give him some IV Zofran which helped settle things down quickly and the IV Dilaudid brought his pain down to a 5. Just so happens that a great Internal Medicine Doctor was on-call, which pleased the E.R. doc greatly. She chatted with us at great length and made the decision to admit E. ... to ICU.
So, E.'s in ICU (the one on the 5th floor instead of the one on the 1st floor, which is waaaaay nicer) This is definitely a step-up from the ICU post-brain surgery. They've got him hooked up to a variety of meds ... some to try to stop the bleeding, some anti-biotics, some of his regular meds now delivered via IV, some hydration, etc. He's getting the nausea meds, which are helping. They've also switched him to Morphine for pain. His pain is still at a 4, with break-through pain of a 6 here and there. The Morphine is lowering his blood pressure and making his breathing really shallow though, so they've had to put him on oxygen. The plan is to do a scope on him in the morning to try to see where this blood is coming from and go from there. When I asked about an anticipated length of stay, I was told, "Let's plan on 3 or 4 days right now and go from there." E. says, "3 or 4 days my a$$."
He spent all Friday throwing up. He kept nothing down. We tried some toast. Up it came. We tried some Ensure. Up it came. I gave him some Zofran (anti-nausea meds) and waited. Then we tried some Ensure again. Up it came. Nothing, and I mean nothing, stayed down. It looked like brown bile, so we both thought maybe it was a good thing. Maybe some of that bile was coming up and out. Maybe it would bring that bilirubin number down.
Saturday, it seemed like he was feeling better. Then he began throwing up again. As I went to pour out the puke bucket, I noticed the color wasn't brown, but dark red. And it was filled with clots. Like lots of little chicken livers. I looked closer. Yup, blood. I quietly said to E., "I think we might need to head to the hospital because you're throwing up blood," and the man who usually fights and argues about anything medically related began to look for his shoes without another word. (In hindsight, I'm now wondering if he wasn't throwing up blood yesterday as well.)
By the time we reached the Emergency Room, his pain level was topping an 8. I got him into a wheelchair and they were able to triage him immediately and get us straight back into a room. Unfortunately, they could give him nothing until he was seen by a doctor and that took a while longer. Eventually they ran some labs on him (his bilirubin is STILL a 5.8! but he's not anemic yet which means he hasn't lost too much blood). He began throwing up in the E.R. and the color was then a brighter red, whatever than meant. They were able to give him some IV Zofran which helped settle things down quickly and the IV Dilaudid brought his pain down to a 5. Just so happens that a great Internal Medicine Doctor was on-call, which pleased the E.R. doc greatly. She chatted with us at great length and made the decision to admit E. ... to ICU.
So, E.'s in ICU (the one on the 5th floor instead of the one on the 1st floor, which is waaaaay nicer) This is definitely a step-up from the ICU post-brain surgery. They've got him hooked up to a variety of meds ... some to try to stop the bleeding, some anti-biotics, some of his regular meds now delivered via IV, some hydration, etc. He's getting the nausea meds, which are helping. They've also switched him to Morphine for pain. His pain is still at a 4, with break-through pain of a 6 here and there. The Morphine is lowering his blood pressure and making his breathing really shallow though, so they've had to put him on oxygen. The plan is to do a scope on him in the morning to try to see where this blood is coming from and go from there. When I asked about an anticipated length of stay, I was told, "Let's plan on 3 or 4 days right now and go from there." E. says, "3 or 4 days my a$$."
Wednesday, November 14, 2012
Lab Results
Well, sh*t. Lab results aren't normal.
1) Bilirubin, Total: 5.8 (normal 0.0-1.1)
2) Alkaline Phosphatase: 484 (normal 25-150)
3) AST: 132 (normal 0-40)
4: ALT: 107 (normal 0-44)
To compare to the 10/29/12 lab results:
1) Bilirubin, Total: 8.4
2) Alkaline Phosphatase: 390
3) AST: 173
4) ALT: 128
So, there is some improvement. Except for the Alkaline Phosphatase. I'm not sure what that's about.
1) Bilirubin, Total: 5.8 (normal 0.0-1.1)
2) Alkaline Phosphatase: 484 (normal 25-150)
3) AST: 132 (normal 0-40)
4: ALT: 107 (normal 0-44)
To compare to the 10/29/12 lab results:
1) Bilirubin, Total: 8.4
2) Alkaline Phosphatase: 390
3) AST: 173
4) ALT: 128
So, there is some improvement. Except for the Alkaline Phosphatase. I'm not sure what that's about.
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