E.'s cousin came to visit last night and I shared with her the events of the previous 24 hours. She chatted with E. and could easily see how he was suffering in pain. She and I agreed that he needed to go to the Emergency Room for some relief. After tag-teaming him with our line of reasoning, he finally conceded. We loaded him up and were on our way before he could change his mind.
The Emergency Room was not exactly what we expected on a Thursday night, but supposedly the computers were down which made everything go in slow motion. We arrived about 8:00 p.m. After doing an x-ray on E.'s abdomen, they discovered that he was backed up, not only with fecal matter, but also with barium (barium from his Upper GI from 11 days ago!). That barium had essentially turned to concrete up there and was causing a few problems. Ya think? A large (and disgusting) enema was supposed to do the trick. But it didn't. It actually did nothing. At all. Except cause him A LOT of pain. So, they decided to admit him. At 5:00 a.m. Yes, after we had been there for nine hours. Sigh.
He got settled in a regular room on the Oncology floor. But then they couldn't really do anything for him because he was scheduled for a PET/CT at 11:00. Everything had to wait until after that test was completed. (Side note: As part of the PET/CT, he had to drink more barium. I kid you not.) Because the PET/CT was scheduled previously on an outpatient basis, it was scheduled in the office building across the street from the hospital. That meant that E. had to be transported and I assumed we would just put him in a wheelchair and wheel him across the street. Instead, the transport company put him in a wheelchair, took him through the Emergency Room, out the ambulance bay and into a van. We then DROVE across the street (literally, across a residential street), unloaded him, went into the building and got him to his PET/CT. We repeated the process on the way back. I'm sure that just cost us a pretty penny. On a good note, E. handled the scan like a trooper.
Once back in the room, they gave E. a shot in the belly to help get some things moving in there. I forget what the shot is called. They're also having him drink some "Magnesium Citrate," which supposedly also helps things along. E. has been very cranky, and has gotten quite pissy with several of the nurses and doctors. I know he's frustrated and that frustration is coming out. He's also got a bit of confusion and disorientation, which only adds to that frustration. Add intense pain to the mix, and it's just a ball of fun.
They did another x-ray of his abdomen to monitor the progress of sh*t in there. Literally. Haha. He seems to think he's getting out of the hospital tomorrow, but I don't think that will be the case at all. We haven't seen any of E.'s regular doctors. I called his oncologist, who was out of the office. I called his radiation oncologist, who was out of the office. I called his gastroenterologist, who was out of the office. I called his primary care provider, who was out of the office. I guess this was THE Friday to take off. Now that we're heading into the weekend, my guess is that we're here until at least Monday. Hoping for some pain relief for him and some sleep for the both of us.
Friday, November 30, 2012
Thursday, November 29, 2012
Ultrasound
Last night was a long one. There was little sleep for either of us. E. had some severe pain and constipation issues. I wound up calling the Home Health Nurse, who came over at about 9:30 or 10:00 p.m. to help. Unfortunately, there wasn't a solution to be had and E. refused to go to the Emergency Room. Up and down, up and down, all night long.
By morning, things were a tad better, but not much. E. did manage to get his ultrasound done, but by the time he got home, he was throwing up. There just didn't seem to be an end in sight to the pain. The family doctor called and explained that while the ultrasound showed some fluid retention in his abdomen, there wasn't the massive amount she expected to see. She was going to fax the report to his GI doctor to see how they wanted to handle the situation and if they wanted to drain the fluid.
I'm hoping for a good night sleep for everyone tonight.
By morning, things were a tad better, but not much. E. did manage to get his ultrasound done, but by the time he got home, he was throwing up. There just didn't seem to be an end in sight to the pain. The family doctor called and explained that while the ultrasound showed some fluid retention in his abdomen, there wasn't the massive amount she expected to see. She was going to fax the report to his GI doctor to see how they wanted to handle the situation and if they wanted to drain the fluid.
I'm hoping for a good night sleep for everyone tonight.
Wednesday, November 28, 2012
No Go on the Ultrasound
The Home Health Nurse came this morning and was able to draw labs straight from the picc line. It was nice not having to go to the Lab. The picc line will have to be flushed, but we're not quite sure if that will be weekly or daily. E.'s vitals were all stable, although his oxygen saturation level is still running low and his pulse is still running high.
The ultrasound was a bust. E. was simply in too much pain to go anywhere. He could barely make it from the bed to the bathroom. There was no way he was going to make it to the car. I called the Radiology Department and was able to reschedule for tomorrow. So, we'll try again tomorrow and hope Take #2 is successful.
The doctor's office called this afternoon with the results of his labs already. E.'s potassium level was low at 3.3 so they're calling in a prescription for potassium. If I recall correctly, the potassium comes in a powder that needs to be mixed in water and E. really hates it (I think he's had it at least once or twice before).
The liver numbers are still improving, so that's good.
1) Bilirubin, Total: 2.7 (normal 0.0-1.1)
2) Alkaline Phosphatase: 214 (normal 25-150)
3) AST: 68 (normal 0-40)
4) ALT: 34 (normal 0-44)
To compare to past results:
Bilirubin on 11/20/12: 3.8; 11/14/12: 5.8; 10/29/12: 8.4
Alkaline Phosphatase on 11/20/12: 212; 11/14/12: 484; 10/29/12: 390
AST on 11/20/12: 71; 11/14/12: 132; 10/29/12: 173
ALT on 11/20/12: 49; 11/14/12: 107; 10/29/12: 128
The ultrasound was a bust. E. was simply in too much pain to go anywhere. He could barely make it from the bed to the bathroom. There was no way he was going to make it to the car. I called the Radiology Department and was able to reschedule for tomorrow. So, we'll try again tomorrow and hope Take #2 is successful.
The doctor's office called this afternoon with the results of his labs already. E.'s potassium level was low at 3.3 so they're calling in a prescription for potassium. If I recall correctly, the potassium comes in a powder that needs to be mixed in water and E. really hates it (I think he's had it at least once or twice before).
The liver numbers are still improving, so that's good.
1) Bilirubin, Total: 2.7 (normal 0.0-1.1)
2) Alkaline Phosphatase: 214 (normal 25-150)
3) AST: 68 (normal 0-40)
4) ALT: 34 (normal 0-44)
To compare to past results:
Bilirubin on 11/20/12: 3.8; 11/14/12: 5.8; 10/29/12: 8.4
Alkaline Phosphatase on 11/20/12: 212; 11/14/12: 484; 10/29/12: 390
AST on 11/20/12: 71; 11/14/12: 132; 10/29/12: 173
ALT on 11/20/12: 49; 11/14/12: 107; 10/29/12: 128
Tuesday, November 27, 2012
Picc Line
E. was agreeable to trying a pain patch, so we placed the first one on him last night. It's the lowest dose right now. He wears it for three days and then he gets a new one. The idea is that it takes the edge off the pain and keeps him a little more comfortable. He can still take his other pain meds for any "break through" pain. If this level of pain meds is not adequate, they can increase the dosage of both the pain patch and the other meds as well. I'm not sure if the pain is getting more intense or if E. is getting sick of everyone nagging him, but he seems more open to pain relief these days. I'm not sure why, but nausea has hit hard the last couple of days. He's gotten sick both yesterday and today. Since he hasn't been eating, that means he's throwing up bile. And since the last throwing up episode wound up in a bloody mess, I stand over his shoulder and watch him like a hawk. Thankfully, there's been no blood.
E.'s very unstable on his feet these days and moving anywhere is slow and tedious. I have to remember to plan double the time I think we need. We managed to get from the house to the car with his walker, but it used up every ounce of energy he had. By the time we got to the hospital, we had to resort to a wheelchair. Other than the 45 minute delay at Radiology, the procedure to get the picc line only took a few minutes and we were headed home again. With E.'s veins as weak as they are, I think the picc line will save him a lot of pain and agony. It will be nice not to have to watch people stick him over and over again or dig around trying to get a good stick.
E. seems a little confused from time to time. It may be the medication, or the dehydration, or the pain meds, or the cancer, or the lack of nutrition, or any combination of the above. Sometimes I have no idea what he is talking about. Sometimes when I figure it out, I have to laugh because it has nothing to do with what is going on right now. But sometimes he's got it all together and I'm the one that doesn't have a clue. What a pair we are.
So tonight, I have him all tucked in to his hospital bed, right next to the "big bed." I have the rails up on the sides so he can't make any crazy escapes in the night. Hoping for a good night's sleep for all of us.
E.'s very unstable on his feet these days and moving anywhere is slow and tedious. I have to remember to plan double the time I think we need. We managed to get from the house to the car with his walker, but it used up every ounce of energy he had. By the time we got to the hospital, we had to resort to a wheelchair. Other than the 45 minute delay at Radiology, the procedure to get the picc line only took a few minutes and we were headed home again. With E.'s veins as weak as they are, I think the picc line will save him a lot of pain and agony. It will be nice not to have to watch people stick him over and over again or dig around trying to get a good stick.
E. seems a little confused from time to time. It may be the medication, or the dehydration, or the pain meds, or the cancer, or the lack of nutrition, or any combination of the above. Sometimes I have no idea what he is talking about. Sometimes when I figure it out, I have to laugh because it has nothing to do with what is going on right now. But sometimes he's got it all together and I'm the one that doesn't have a clue. What a pair we are.
So tonight, I have him all tucked in to his hospital bed, right next to the "big bed." I have the rails up on the sides so he can't make any crazy escapes in the night. Hoping for a good night's sleep for all of us.
Monday, November 26, 2012
Doctor Visit
We got in to see the doctor first thing this morning. I just love our family doctor.
She quickly assessed the situation and immediately wrote her "to do" list.
* get a picc line inserted over at Radiology
* set up IV hydration
* order labs
* fill out a form for a handicap placard for DMV
* order abdominal ultrasound to check for fluid retention
* get a hospital bed and wheelchair delivered
* monitor diabetes - check blood glucose numbers in a week and re-evaluate
* prescribe pain patches
* switch medications to liquid or IV form if available
* communicate with home health about ongoing care
By the end of the day, she had most of her list done. E's scheduled to get his picc line inserted tomorrow. We had to run by the lab to get his protime, as it was a prerequisite for tomorrow's procedure, but future labs can just be drawn from his picc line. The abdominal ultrasound is scheduled for Thursday. The hospital bed and wheelchair are being delivered tomorrow. Pain patches and liquid meds have been called in to the pharmacy. The DMV form has been filled out and now awaits me actually taking it to that dreaded place. Even the infusion clinic has already called to collect basic information to set up E.'s account for his hydration supplies. I talked to her about my concern regarding his oxygen saturation levels as they have been running between 90 and 93 (once as low as 88). She explained that she wanted to check for potential causes before just giving him oxygen as she'd much rather treat the problem than just provide a bandaid. If there is a bunch of fluid in his abdomen, it could be pushing on organs including his diaphragm, making it difficult for him to getting adequate oxygen exchange. If fluid retention is not the issue, E. may need some supplemental oxygen at that point.
I went ahead and cancelled the visit from the home health nurse today since we'd already seen the doctor. E.'s vitals were stable and I think that's all home health would be checking today.
She quickly assessed the situation and immediately wrote her "to do" list.
* get a picc line inserted over at Radiology
* set up IV hydration
* order labs
* fill out a form for a handicap placard for DMV
* order abdominal ultrasound to check for fluid retention
* get a hospital bed and wheelchair delivered
* monitor diabetes - check blood glucose numbers in a week and re-evaluate
* prescribe pain patches
* switch medications to liquid or IV form if available
* communicate with home health about ongoing care
By the end of the day, she had most of her list done. E's scheduled to get his picc line inserted tomorrow. We had to run by the lab to get his protime, as it was a prerequisite for tomorrow's procedure, but future labs can just be drawn from his picc line. The abdominal ultrasound is scheduled for Thursday. The hospital bed and wheelchair are being delivered tomorrow. Pain patches and liquid meds have been called in to the pharmacy. The DMV form has been filled out and now awaits me actually taking it to that dreaded place. Even the infusion clinic has already called to collect basic information to set up E.'s account for his hydration supplies. I talked to her about my concern regarding his oxygen saturation levels as they have been running between 90 and 93 (once as low as 88). She explained that she wanted to check for potential causes before just giving him oxygen as she'd much rather treat the problem than just provide a bandaid. If there is a bunch of fluid in his abdomen, it could be pushing on organs including his diaphragm, making it difficult for him to getting adequate oxygen exchange. If fluid retention is not the issue, E. may need some supplemental oxygen at that point.
I went ahead and cancelled the visit from the home health nurse today since we'd already seen the doctor. E.'s vitals were stable and I think that's all home health would be checking today.
Sunday, November 25, 2012
Made it Through the Weekend
It's Sunday evening and we're still at home. That's a very good thing.
The physical therapist came by today to do her evaluation, but E. was in too much pain to even get out of bed. She did give me some tips and pointers. She also showed me some things I could do with him when he's feeling a little more comfortable to help with his back and hip pain. She'll be back to try again on Saturday.
I wish I could say that E.'s feeling better and things are on the upswing, but that's not the case at all. I have a list of things we need to discuss with the doctor, so we'll be calling first thing in the morning to make an appointment.
Seeing someone you love in this much pain is agonizing. I wish I could make it all better.
The physical therapist came by today to do her evaluation, but E. was in too much pain to even get out of bed. She did give me some tips and pointers. She also showed me some things I could do with him when he's feeling a little more comfortable to help with his back and hip pain. She'll be back to try again on Saturday.
I wish I could say that E.'s feeling better and things are on the upswing, but that's not the case at all. I have a list of things we need to discuss with the doctor, so we'll be calling first thing in the morning to make an appointment.
Seeing someone you love in this much pain is agonizing. I wish I could make it all better.
Friday, November 23, 2012
Home Health Nurse
A Home Health Nurse visited today. She spent a lot of time going over E.'s history, his medications, his discharge instructions and the services they would be providing. E. slept on and off throughout her visit and wasn't thrilled with having to answer the same questions for yet another person. He is frustrated because he feels like there are too many people involved in his case. (He'll really be thrilled after the Certified Nursing Assistant, the Physical Therapist, and the Occupational Therapist all visit next week too. Oh, and throw in the Palliative Care folks too.)
I expressed some concern about his diabetes medications. His oral diabetes medications were discontinued because of his poor liver function, so he is strictly on insulin currently. With how little he is eating, I was unsure of how much short and long-acting insulin to give him. The Home Health Nurse called the Primary Care Doctor to get some clarification, so now I have guidance there.
There's also a general concern about dehydration. E. is simply not drinking enough liquids to stay hydrated. She recommended 16 to 24 ounces of liquids per day at a minimum and we're lucky if E. has 8. The nurse and I both agreed that IV hydration would be beneficial and we discussed the apparent need for a picc line since E.'s veins are so horrible and don't maintain peripheral IV's very well at all. Since it's the long weekend though, we won't be able to get a doctor's order for a picc line until Monday. The nurse wasn't sure he'd make it through the weekend without some IV hydration, which would mean a trip to the Emergency Room and undoubtedly another admission to the hospital. Groan. (After the nurse left, she spoke to her supervisor and found out that she could start a peripheral IV and slowly run a bag of IV hydration overnight. I suggested this to E. and explained our reasoning behind it, but he grumpily opposed it in very colorful language. So, we cross our fingers and hope he drinks enough to stay hydrated enough to stay out of the dang hospital.)
There appears to be some fluid collecting in E.'s abdomen. It is big and hard. The nurse measured it and will continue to monitor it. It may possibly need to be drained.
E.'s blood pressure continues to be good. His oxygen saturation rate was 93, which concerned me, but the nurse said it was okay. When it was that level at the hospital, they put him on a couple liters of oxygen.
Getting in and out of our bed (we have a big tall log bed) is proving to be too difficult. E. slept in Grandpa's bed in the guest room last night as it is easier for him to get in and out of, although he still needs assistance. (It was worse than having a newborn baby at home last night, as I was trying to listen for every sound.) I think it is time to bring in a hospital bed and align it next to our bed. That way, he can be comfortable and I can still be next to him. I think having the hospital bed with the ability to raise the head will help too. It will make it more comfortable for him and make it easier for him to get out of bed. The hardest thing for him is to get into the sitting position when he's been laying down. When I suggested it might be time for a hospital bed, E. said, "probably." I always know I am on the right track when I don't hear cuss words or a big argument from him.
So, we continue to try to push the fluids and keep him out of pain.
I expressed some concern about his diabetes medications. His oral diabetes medications were discontinued because of his poor liver function, so he is strictly on insulin currently. With how little he is eating, I was unsure of how much short and long-acting insulin to give him. The Home Health Nurse called the Primary Care Doctor to get some clarification, so now I have guidance there.
There's also a general concern about dehydration. E. is simply not drinking enough liquids to stay hydrated. She recommended 16 to 24 ounces of liquids per day at a minimum and we're lucky if E. has 8. The nurse and I both agreed that IV hydration would be beneficial and we discussed the apparent need for a picc line since E.'s veins are so horrible and don't maintain peripheral IV's very well at all. Since it's the long weekend though, we won't be able to get a doctor's order for a picc line until Monday. The nurse wasn't sure he'd make it through the weekend without some IV hydration, which would mean a trip to the Emergency Room and undoubtedly another admission to the hospital. Groan. (After the nurse left, she spoke to her supervisor and found out that she could start a peripheral IV and slowly run a bag of IV hydration overnight. I suggested this to E. and explained our reasoning behind it, but he grumpily opposed it in very colorful language. So, we cross our fingers and hope he drinks enough to stay hydrated enough to stay out of the dang hospital.)
There appears to be some fluid collecting in E.'s abdomen. It is big and hard. The nurse measured it and will continue to monitor it. It may possibly need to be drained.
E.'s blood pressure continues to be good. His oxygen saturation rate was 93, which concerned me, but the nurse said it was okay. When it was that level at the hospital, they put him on a couple liters of oxygen.
Getting in and out of our bed (we have a big tall log bed) is proving to be too difficult. E. slept in Grandpa's bed in the guest room last night as it is easier for him to get in and out of, although he still needs assistance. (It was worse than having a newborn baby at home last night, as I was trying to listen for every sound.) I think it is time to bring in a hospital bed and align it next to our bed. That way, he can be comfortable and I can still be next to him. I think having the hospital bed with the ability to raise the head will help too. It will make it more comfortable for him and make it easier for him to get out of bed. The hardest thing for him is to get into the sitting position when he's been laying down. When I suggested it might be time for a hospital bed, E. said, "probably." I always know I am on the right track when I don't hear cuss words or a big argument from him.
So, we continue to try to push the fluids and keep him out of pain.
Subscribe to:
Posts (Atom)
