Mom was lying in bed, watching the parade with her roommate Jesse when I arrived around 11:30 on Thanksgiving. She said she went to physical therapy that morning, but only lasted five minutes or so because the pain was too great just sitting in the wheel chair. Today, however, she managed a half hour in the chair during an occupational therapy session. Getting the pain under control has been difficult in part because pain meds are given as needed, on demand, and being her usual stoic self, she doesn't want to ask for anything until it's unbearable. I spoke with the physician assistant who works with her doctor here, and she wrote orders for Mom to have Narcan (naloxone) every four hours, not just when she asks for it.
Her appetite is hearty, though. She claims the food has improved since her stay a few months ago (other improvements include wireless). The noon meal on Thanksgiving was traditional Thanksgiving fare, and she ate practically everything on her plate. How she manages to eat while lying at a 25 degree angle is beyond me.
Tara and her son Adam's visit yesterday afternoon lifted her spirits considerably. Byron and Colleen dropped by yesterday and today, and Mom's friend June also visited today. She's pretty exhausted from the day's activities, and as type she's napping. At least when she's sleeping she seems to get some relief from the pain.
Friday, November 27, 2009
Wednesday, November 25, 2009
She's Wearing Clothes
When I arrived for my visit, mom was talking with the dietian, planning her meals for tomorrow. She was dressed, the catheter has been removed and said she had been up in a wheelchair to get weighed earlier. When I asked, she said that the pain was severe earlier when she was being weighed and she wasn't sure if she had been given any pain meds prior to activity. She called her nurse and we discussed her level of pain and discussed receiving medication every 4 hours as needed instead of every 6. I shared with nurse Cynthia that it is our understanding that she would be given medication in conjunction with therapy and mentioned that mom is hesitant about asking for relief when she needs it. It was emphasized that she has to ask for medication when she needs it. I'm heading out this evening for Thanksgiving in Louisville on the farm, thanks Maggie for the invite, but I really would like to get home. Val will be down tomorrow and Tara & Adam will also be visiting.
Happy Turkey Day y'all
Happy Turkey Day y'all
Tuesday, November 24, 2009
And Here's The Update
Mom has been discharged from Beaumont and is currently in residence at Heartland Oakland. As Val mentioned in her earlier update this is where she was in rehab following her hip surgery. She liked the facility, we liked the facility and they were willing to accept her with the physical limitation she currently has. Following yesterdays activities, mom and I discussed her options and she made the decision to try rehab. Her determination is strong and she wants to at least try to sit up in bed and a chair with minimum pain and is determined she will walk again. It's important to her that she at least try and she appears to be willing to do whatever it takes.
The address for Heartland - Oakland is: 925 W South Boulevard
Troy, Michigan 48085
She is in room 101-1 and her phone number is 248-729-4337.
Once she was settled in her bed, she was trying to figure out how the ambulance drivers got here, telling me how she would have driven and I'm sure offered similar suggestions to the drivers.
That's it for now, if there's anything else I'll let you know.
The address for Heartland - Oakland is: 925 W South Boulevard
Troy, Michigan 48085
She is in room 101-1 and her phone number is 248-729-4337.
Once she was settled in her bed, she was trying to figure out how the ambulance drivers got here, telling me how she would have driven and I'm sure offered similar suggestions to the drivers.
That's it for now, if there's anything else I'll let you know.
Moving day
This just in -- Mom is being moved to Heartland-Oakland, where she was last spring/summer, this afternoon. So it looks like rehab it will be. Details will be forthcoming.
Addendum
I forgot to add in yesterday's post that Dave returned Sunday evening ... I don't know what we would do without him being there for Mom. One thing for sure is that I don't think she'd have the level of care she's enjoyed. On Sunday Mom had several visitors, which brightened her day.
Monday, November 23, 2009
From stage four to stage zero
We learned early this afternoon that the growth on Mom's sacrum is not malignant, nor is it related to Paget's disease. It appears to be a bone infarct, and is pressing on nerves which causes the pain. To paraphrase the Merriam-Webster Medical Dictionary, an infarct is an area of necrotic (dead) tissue resulting from the obstruction of the local circulation. It is not uncommon for bone infarcts to mimic bone cancer, which apparently it did in Mom's case. As I understand it, she also has a hairline fracture in her pelvis.
There really isn't a cure. Dr. D. indicated that pain management and physical therapy would be the likely treatment. In that she's been in bed for nearly three weeks, and wasn't exactly active prior to her hospitalization, she has considerable muscle atrophy. We're hoping she can get to the point where she can sit up without overwhelming pain and possible use a bedside commode. Looks like another stint at Heartland is in her future.
There really isn't a cure. Dr. D. indicated that pain management and physical therapy would be the likely treatment. In that she's been in bed for nearly three weeks, and wasn't exactly active prior to her hospitalization, she has considerable muscle atrophy. We're hoping she can get to the point where she can sit up without overwhelming pain and possible use a bedside commode. Looks like another stint at Heartland is in her future.
Sunday, November 22, 2009
A quiet Saturday
Mom had a quiet but disappointing Saturday. She didn't have any visitors other than me, her roommate (the 5th? 6th? I've lost count) left before lunch and the new one didn't arrive until the early evening, so she had several hours of peace and quiet and got a lot of rest. She was certain that she'd be able to sit up for a while, so a half hour after she had some Vicodin, we got her up so she could sit on the side of the bed. The pain was too much, though, and she barely lasted seven minutes. She described the pain as being so great that "it took my breath away." She was so disappointed; "I was certain I'd be able to sit up." Poor thing. As long as she does nothing and doesn't have the head of the bed raised more than 25 degrees, the pain is tolerable. But if the bed is raised more than that, it's excruciating, even if she's had some pain meds. She keeps asking "why am I not working right?" Hopefully we'll find out tomorrow.
Saturday, November 21, 2009
Same old, same old
Dr. D. stopped by around 11:30 this morning to report that the bone biopsy results wouldn't be available until Monday (big surprise). Another exciting weekend at Beaumont. Mom reported that she had a good night's sleep. I'm sure Dave did too, sleeping in his own bed for the first time in two weeks (and being able to use his own shower).
Mom still has some bouts of nausea. Right now she's not on any pain meds; she says if she doesn't do anything, she doesn't hurt much and since all she's doing is lying in bed, pain isn't a big factor. But she can tolerate having her bed raised only about 30 degrees, making eating somewhat challenging. When we made her food selections for tomorrow earlier this morning, the ease of edibility was a factor.
Mom's view is of another hospital wing, but it's buffered by several beautiful plants and treats (get here soon if you want to sample the gourmet popcorn (thanks, Tara and Steve)). And thanks to everyone for your thoughtfulness and continuing concern.
Mom still has some bouts of nausea. Right now she's not on any pain meds; she says if she doesn't do anything, she doesn't hurt much and since all she's doing is lying in bed, pain isn't a big factor. But she can tolerate having her bed raised only about 30 degrees, making eating somewhat challenging. When we made her food selections for tomorrow earlier this morning, the ease of edibility was a factor.
Mom's view is of another hospital wing, but it's buffered by several beautiful plants and treats (get here soon if you want to sample the gourmet popcorn (thanks, Tara and Steve)). And thanks to everyone for your thoughtfulness and continuing concern.
Friday, November 20, 2009
The Wait Continues
Hanging out at the hospital this morning & afternoon was pleasant. PT came in and got her out of bed into the chair with the goal of eating breakfast sitting up. That lasted about 5 minutes and the pain got pretty bad. She received her pain medication just before getting up and commented that it would have been better if it had been given 30 minutes before PT did their thing. We live and learn.
I started back to Ashland about 2:30 and Dr D called while enroute and let me know that the results are not back and probably won't be back until Monday. Since she is on duty this weekend she'll be making rounds and I let her know Val and/or Byron would be on "duty".
I'm home, have a good weekend.
I started back to Ashland about 2:30 and Dr D called while enroute and let me know that the results are not back and probably won't be back until Monday. Since she is on duty this weekend she'll be making rounds and I let her know Val and/or Byron would be on "duty".
I'm home, have a good weekend.
Thursday, November 19, 2009
The Waiting Game
I missed the Doctor's visit this morning but checked with nurse Kristen, there wasn't much to report. We're still waiting for the results of the biopsy and won't be able to make any plans until then. I did speak with the discharge planner and learned that there are no beds at St Anne Meades. After explaining the situation to her, I requested she persue a bed at Heartland Oakland, just in case. Several visitors today including Maggie Robbins and Marlene from church. She also ate well, for her and is enjoying the Candy Cane Joe-Joe's I brought her from Trader Joe's.
I think I'm going to leave pretty soon and head home. If anything else happens, we will let you know.
I think I'm going to leave pretty soon and head home. If anything else happens, we will let you know.
Wednesday, November 18, 2009
Evening update
Mom's iliac bone biopsy went well this afternoon. We won't have results for several days, so it's pretty much status quo right now. It seems the pain is better controlled, although she still cannot sit up without excruciating pain. Keep those positive thoughts coming.
Yes, there is one more test
The CT and bone scans did not show any markers of tumors elsewhere, which we could take as good news. Dr. D. expressed that she was mystified by all of this, and mused that maybe it was Paget's disease, to which Dave and I said well, yeah, she was diagnosed with Paget's years ago--wasn't that in her chart? No.
Paget's is an interesting disease in that it can be asymptomatic for years; in fact, many never manifest any symptoms. Mom had been taking meds for it, but we discovered today that she quit one of them earlier this year. She had requested a refill through Medco and it was denied, likely because the prescription expired, and she didn't get a new prescription. Apparently it was not mentioned in subsequent doctor visits (of which there were several) so she rightfully figured she didn't need it. In retrospect we should have been on top of this, but until now, she's done a relatively good job of taking care of herself (and was adamant about doing so). And who knows, it may not have mattered anyway.
Anyway, the upshot is a needle biopsy has been ordered. This will provide more specific information regarding the tumor. If it's determined it's a metastasis from another site, palliative radiation may be ordered to shrink it to help with pain management. If it's a Paget's cancer (a rare but possible complication), the thought right now is radiation won't help much. In either event, pain management will be a major factor and possibly physical therapy so she can have some mobility.
We know now that we don't know. So what else is new? Being in the hospital is not an enjoyable experience for patient and family alike, but at least Mom is getting good care; she has had some exceptional nurses, several of whom stop by to see her even when she's not their patient. It also helps that she was moved to the bed by the window, which is less claustrophobic than the bed by the door.
If you're reading this, happy birthday, Laurel!
Paget's is an interesting disease in that it can be asymptomatic for years; in fact, many never manifest any symptoms. Mom had been taking meds for it, but we discovered today that she quit one of them earlier this year. She had requested a refill through Medco and it was denied, likely because the prescription expired, and she didn't get a new prescription. Apparently it was not mentioned in subsequent doctor visits (of which there were several) so she rightfully figured she didn't need it. In retrospect we should have been on top of this, but until now, she's done a relatively good job of taking care of herself (and was adamant about doing so). And who knows, it may not have mattered anyway.
Anyway, the upshot is a needle biopsy has been ordered. This will provide more specific information regarding the tumor. If it's determined it's a metastasis from another site, palliative radiation may be ordered to shrink it to help with pain management. If it's a Paget's cancer (a rare but possible complication), the thought right now is radiation won't help much. In either event, pain management will be a major factor and possibly physical therapy so she can have some mobility.
We know now that we don't know. So what else is new? Being in the hospital is not an enjoyable experience for patient and family alike, but at least Mom is getting good care; she has had some exceptional nurses, several of whom stop by to see her even when she's not their patient. It also helps that she was moved to the bed by the window, which is less claustrophobic than the bed by the door.
If you're reading this, happy birthday, Laurel!
Tuesday, November 17, 2009
Are There Any More Tests Available?
The results of last nights bone scan aren't in yet, and when I arrived this morning mom was drinking some fluid for her CT Scan said she slept well and mentioned some pain. I told her her pain medication had been suspended and some time today we would be meeeting with the Pain Management group to look at how best to manage it. She left for the scan and I left for a while.
On my way back to WBH I received a call from moms nurse informing me she wanted to speak to me. The point of the conversation was that mom felt there was nothing wrong with her, she didn't have a doctor, no one has told her what's going on and she was being a nuisance. By the time I got back to her room, the pity party was over, her Dr was there patiently explaining everything again and assuring her with professionalism and kindness. I did pretty much the same thing.
Shortly after that, she again was transported for an x-ray of her right shoulder. Back in her room she was very alert, talkative and appeared to know what was going on. We talked a little about what's going on and why.
Her friend Sally came for a visit, Byron showed up as well & so did lunch. After Byron left Pricilla & Sheila came to visit and have been working on getting her to eat and drink. June Hall & Pat Martins showed up for a visit as well so I'm sure the room is humming with lots of solutions to all the worlds problems.
Right now, there are no more tests scheduled. It is hoped that with the bone/CT Scans we will finally get a diagnosis and prognosis and proceed well informed. Discharge planning came by to let us know they have spoken with St Anne Meades, mom didn't know about that and it ruined the surprise. Once we have solid information to proceed with, we will head in that direction, hopefully before the weekend.
That's all I know for now. Val is coming to town this afternoon so I may be getting out of here earlier than usual, thus the early post.
Have a Great Day Y'all
On my way back to WBH I received a call from moms nurse informing me she wanted to speak to me. The point of the conversation was that mom felt there was nothing wrong with her, she didn't have a doctor, no one has told her what's going on and she was being a nuisance. By the time I got back to her room, the pity party was over, her Dr was there patiently explaining everything again and assuring her with professionalism and kindness. I did pretty much the same thing.
Shortly after that, she again was transported for an x-ray of her right shoulder. Back in her room she was very alert, talkative and appeared to know what was going on. We talked a little about what's going on and why.
Her friend Sally came for a visit, Byron showed up as well & so did lunch. After Byron left Pricilla & Sheila came to visit and have been working on getting her to eat and drink. June Hall & Pat Martins showed up for a visit as well so I'm sure the room is humming with lots of solutions to all the worlds problems.
Right now, there are no more tests scheduled. It is hoped that with the bone/CT Scans we will finally get a diagnosis and prognosis and proceed well informed. Discharge planning came by to let us know they have spoken with St Anne Meades, mom didn't know about that and it ruined the surprise. Once we have solid information to proceed with, we will head in that direction, hopefully before the weekend.
That's all I know for now. Val is coming to town this afternoon so I may be getting out of here earlier than usual, thus the early post.
Have a Great Day Y'all
Monday, November 16, 2009
It Keeps Getting Curiouser & Curiouser
When I got here Monday morning, mom was sleeping but woke up long enough to tell me she slept well and her pain was minimal.
Starting about 9:10 things got interesting. Dr C, the oncologist, called regarding the planned needle biopsy. A CT Scan from 2008 was located and it appears the tumor we believe is causing the pain was present then. He felt that with this information it was a more prudent decision to do a bone scan than a biopsy if necessary. So nuclear medicine was notified and it was scheduled for that afternoon.
There were several other doctors and groups of doctors representing several disciplines to include physical medicine focusing on physical therapy, oncology hematologists, cardiac and palliative care.
Around 10:30 nuclear medicine came to inject the chemicals for the bone scan stating they would have her transported in 3 hours. Shortly after the injection, Dr Murphy from palliative medicine came in to discuss what are next steps might be. We discussed continuing the pain medicine to keep her comfortable and consider stopping the other medication she takes. There really is not much need for her to continue taking calcium and she felt some of the other meds could be discontinued and would recommend that. We also talked about moving towards hospice care, when we had a definitive diagnosis and prognosis. I explained to her that if the prognosis is 4-6 weeks we would prefer her to be at home, otherwise a residential facility would be used for a longer diagnosis. I requested a Hospice bed at St Anne Mead's, mom seems to like that facility, and I had a discussion with discharge planning/continuing care.
Byron came by around the same time they were serving lunch and we had a nice visit. Before he left the nurse came in to give mom her pain medication before being transported to nuclear medicine. Following procedure prior to administrating the medication, mom's blood pressure had fallen quite a bit. She was also disoriented and non responsive when asked questions. The suspected problem was dehydration and she was given several bags of fluid to bring her BP up. An EKG was also taken and blood was drawn to check cardiac enzymes. The fluids did the trick and her BP started to rise, EKG and blood work were normal. When the blood pressure dropped, CCU was notified for a consult thinking we may be moving. When the CCU resident came down and checked mom out, it was decided she was fine right where she is. In talking with CCU I discovered the DNR we thought was in place wasn't. She spoke with Val, got the appropriate information and will notifiy Dr D to complete the paperwork.
As it stands right now, the bone scan is on hold, maybe tomorrow. This also applies to the biopsy. She's resting and sleeping right now. I expressed my concern that the amount of pain medication could be causing the BP problem and her disorientation.
This just in: the bone scan is on for this evening. Mom had a full bladder and was finally able to empty it, nurse checking with Dr D to reduce oxycontin and possibly catheterize her.
Colleen called about 8 or so to say they took her down for her bone scan and she was leaving. Thanks Colleen. Tomorrow is CT Scan and maybe needle biopsy. Stay tuned!
Starting about 9:10 things got interesting. Dr C, the oncologist, called regarding the planned needle biopsy. A CT Scan from 2008 was located and it appears the tumor we believe is causing the pain was present then. He felt that with this information it was a more prudent decision to do a bone scan than a biopsy if necessary. So nuclear medicine was notified and it was scheduled for that afternoon.
There were several other doctors and groups of doctors representing several disciplines to include physical medicine focusing on physical therapy, oncology hematologists, cardiac and palliative care.
Around 10:30 nuclear medicine came to inject the chemicals for the bone scan stating they would have her transported in 3 hours. Shortly after the injection, Dr Murphy from palliative medicine came in to discuss what are next steps might be. We discussed continuing the pain medicine to keep her comfortable and consider stopping the other medication she takes. There really is not much need for her to continue taking calcium and she felt some of the other meds could be discontinued and would recommend that. We also talked about moving towards hospice care, when we had a definitive diagnosis and prognosis. I explained to her that if the prognosis is 4-6 weeks we would prefer her to be at home, otherwise a residential facility would be used for a longer diagnosis. I requested a Hospice bed at St Anne Mead's, mom seems to like that facility, and I had a discussion with discharge planning/continuing care.
Byron came by around the same time they were serving lunch and we had a nice visit. Before he left the nurse came in to give mom her pain medication before being transported to nuclear medicine. Following procedure prior to administrating the medication, mom's blood pressure had fallen quite a bit. She was also disoriented and non responsive when asked questions. The suspected problem was dehydration and she was given several bags of fluid to bring her BP up. An EKG was also taken and blood was drawn to check cardiac enzymes. The fluids did the trick and her BP started to rise, EKG and blood work were normal. When the blood pressure dropped, CCU was notified for a consult thinking we may be moving. When the CCU resident came down and checked mom out, it was decided she was fine right where she is. In talking with CCU I discovered the DNR we thought was in place wasn't. She spoke with Val, got the appropriate information and will notifiy Dr D to complete the paperwork.
As it stands right now, the bone scan is on hold, maybe tomorrow. This also applies to the biopsy. She's resting and sleeping right now. I expressed my concern that the amount of pain medication could be causing the BP problem and her disorientation.
This just in: the bone scan is on for this evening. Mom had a full bladder and was finally able to empty it, nurse checking with Dr D to reduce oxycontin and possibly catheterize her.
Colleen called about 8 or so to say they took her down for her bone scan and she was leaving. Thanks Colleen. Tomorrow is CT Scan and maybe needle biopsy. Stay tuned!
Sunday, November 15, 2009
Sunday With Lots Of Company 11.15.09
When I arrived this morning mom was eating breakfast and chatting with her nurse Stephanie. Around 10:00 we had some excitement when transport arrived to take mom to nuclear xray for a CT scan. The exciting thing was no one knew that one had been ordered. Turned out ortho ordered it, but since no paperwork was available it didn't happen. Her doctor will check with oncology tomorrow to determine necessity of that test and discuss the possibility of radiation to shrink the tumor which may help enable her to sit up and maybe even get out of bed.
Starting with Colleen & her sister Nancy, mom had a steady supply of visitors most of the day. Shortly after Col & Nancy left, her brother Art and his son Ben came to visit. Along with them were Ben's wife Julia and their children Tim & Anna. They all had a great visit, took a break for lunch and cider at the Franklin Cider Mill, and then returned for a while before heading back to Cleveland. Mom really enjoyed their visit, reminisced with Art and enjoyed talking with Ben & Julia and their children. Priscilla Krippendorf and her daughter Denise also came for a visit.
Timing is everything and shortly after Byron arrived, a Dr from oncology came in for a consult. We reviewed the events leading up to this hospitalization and then he asked us to leave the room so he could perform a brief physical exam. While waiting, Tara & Andrea East arrived and the meeting resumed with them present. After explaining that the family needed a diagnosis and prognosis to determine what's next for her continuing care, the oncologist recommended a needle biopsy to determine where the cancer originated, what type of cancer it is and also provide a prognosis. He didn't feel that it was necessary to do a bone scan at this point since all the information needed could be obtained from the biopsy.
Dr East and Dr C talked Dr talk for a while and some additional blood work was ordered, but the plan did not change, biopsy, then possibly radiation.
Sounds like a plan to me so I left around 8 p.m. with Byron & Colleen in the room
Sorry this is late getting out, I was unable to access any unsecured networks last night.
Starting with Colleen & her sister Nancy, mom had a steady supply of visitors most of the day. Shortly after Col & Nancy left, her brother Art and his son Ben came to visit. Along with them were Ben's wife Julia and their children Tim & Anna. They all had a great visit, took a break for lunch and cider at the Franklin Cider Mill, and then returned for a while before heading back to Cleveland. Mom really enjoyed their visit, reminisced with Art and enjoyed talking with Ben & Julia and their children. Priscilla Krippendorf and her daughter Denise also came for a visit.
Timing is everything and shortly after Byron arrived, a Dr from oncology came in for a consult. We reviewed the events leading up to this hospitalization and then he asked us to leave the room so he could perform a brief physical exam. While waiting, Tara & Andrea East arrived and the meeting resumed with them present. After explaining that the family needed a diagnosis and prognosis to determine what's next for her continuing care, the oncologist recommended a needle biopsy to determine where the cancer originated, what type of cancer it is and also provide a prognosis. He didn't feel that it was necessary to do a bone scan at this point since all the information needed could be obtained from the biopsy.
Dr East and Dr C talked Dr talk for a while and some additional blood work was ordered, but the plan did not change, biopsy, then possibly radiation.
Sounds like a plan to me so I left around 8 p.m. with Byron & Colleen in the room
Sorry this is late getting out, I was unable to access any unsecured networks last night.
Saturday, November 14, 2009
"I'm Not Dead Yet"
Friday afternoon, Dr D informed mother and I that a tumor had metastasized to her sacrum (?) which has been identified as causing all her pain. Because it has metastasized to her bone it is considered a stage 4 cancer. We discussed possible treatment options that would include the palliative step of reducing the tumor through radiation thereby relieving some of the pain. Having a bone scan and CT scan were also considered. Oncology was not in the picture at this time, mom expressed a desire not to go through any heroics and just be kept comfortable. I requested that Hospice be added to the list of people seeing her and placed a request that they consult with Byron, Colleen, Val and myself Saturday 111409.
When I arrived this morning mom informed me that the ortho surgical group had already visited her and told her that she is not a candidate for any surgery. We discussed the options we discussed Friday and then moved on to other things like breakfast using the bed pan and getting cleaned up.
I took a little break and when I returned cousin Tim Tuma was visiting with mom. She was very animated and in pain but enjoying the time they spent talking, giving me not too subtle hints that I didn't need to be in the room. While I was walking Tim to his car, Val arrived with home made peanut butter cookies, lemon drops and more fruit slices. We were enjoying each others company and Reverend Miller came to visit. Again, she was very talkative and animated, but still bothered by the pain. Her lunch arrived and with a moving prayer from Reverend Miller, she commenced eating.
Byron & Colleen arrived while I was walking Reverend Miller out, bearing cake and ice cream to celebrate a belated birthday for Val. It was mom's suggestion and B&C pulled it together. Thanks guys.
About the time we were getting ready to kick the party off the Hospice nurse came in as requested. We discussed criteria to become a hospice patient, and other options. The outcome is we have to get oncology involved, determine if radiation is an option and request a CT scan to determine how much cancer is present. An oncology consult was requested.
In mom's presence we, the 3 of us, discussed what steps were necessary to get additional information. Right now, we only know there's a tumor, it has metastasized and surgery is not an option. With additional information we will be able to make a better, informed decision.
We had cake, ice cream and sang Happy Birthday to Val and enjoyed some pleasant family time.
The title of today's entry is based on a comment mom made which made us all laugh.
Val & Colleen also made a flow chart to help make sure we obtain the information we need. I admit that it will help me ensure I ask the right questions.
After I left, according to Val, an oncologist came in and was informed of what we are trying to do to assist mom getting the best care possible. He is contacting Dr Weissmann to see which group (?) he wants to use.
Mom has been experiencing episodes of vomiting which could be attributed to the type of pain medication she receives, and is taking a Carnation supplement to try and get something in her.
She is aware of what is going on, in reasonably good spirits but continues to be in pain. She welcomes visitors and talking with them. Cards that are being sent to the house are getting to her and she appreciates them as well. I've shared comments posted here an is grateful that so many people care.
That's it for today. I'm going to skip church tomorrow to be with her when the Doctors come around and look forward to seeing her during the planned visit from Tara & Andrea and Priscilla and Denise.
Thanks
When I arrived this morning mom informed me that the ortho surgical group had already visited her and told her that she is not a candidate for any surgery. We discussed the options we discussed Friday and then moved on to other things like breakfast using the bed pan and getting cleaned up.
I took a little break and when I returned cousin Tim Tuma was visiting with mom. She was very animated and in pain but enjoying the time they spent talking, giving me not too subtle hints that I didn't need to be in the room. While I was walking Tim to his car, Val arrived with home made peanut butter cookies, lemon drops and more fruit slices. We were enjoying each others company and Reverend Miller came to visit. Again, she was very talkative and animated, but still bothered by the pain. Her lunch arrived and with a moving prayer from Reverend Miller, she commenced eating.
Byron & Colleen arrived while I was walking Reverend Miller out, bearing cake and ice cream to celebrate a belated birthday for Val. It was mom's suggestion and B&C pulled it together. Thanks guys.
About the time we were getting ready to kick the party off the Hospice nurse came in as requested. We discussed criteria to become a hospice patient, and other options. The outcome is we have to get oncology involved, determine if radiation is an option and request a CT scan to determine how much cancer is present. An oncology consult was requested.
In mom's presence we, the 3 of us, discussed what steps were necessary to get additional information. Right now, we only know there's a tumor, it has metastasized and surgery is not an option. With additional information we will be able to make a better, informed decision.
We had cake, ice cream and sang Happy Birthday to Val and enjoyed some pleasant family time.
The title of today's entry is based on a comment mom made which made us all laugh.
Val & Colleen also made a flow chart to help make sure we obtain the information we need. I admit that it will help me ensure I ask the right questions.
After I left, according to Val, an oncologist came in and was informed of what we are trying to do to assist mom getting the best care possible. He is contacting Dr Weissmann to see which group (?) he wants to use.
Mom has been experiencing episodes of vomiting which could be attributed to the type of pain medication she receives, and is taking a Carnation supplement to try and get something in her.
She is aware of what is going on, in reasonably good spirits but continues to be in pain. She welcomes visitors and talking with them. Cards that are being sent to the house are getting to her and she appreciates them as well. I've shared comments posted here an is grateful that so many people care.
That's it for today. I'm going to skip church tomorrow to be with her when the Doctors come around and look forward to seeing her during the planned visit from Tara & Andrea and Priscilla and Denise.
Thanks
Friday, November 13, 2009
Friday the 13th....So Far
I arrived about 7:15 in time for mom to learn she wasn't going to have breakfast because of the scheduled MRI. Then breakfast was delivered and it was okay to eat. She got cleaned up, bathed, brushed teeth and hair and had clean linens on her bed.
At 0840 Dr Fishman from the orthopedic group came in, said he would contact the spinal group and have them do an evaluation. The usual Q's & A's and brief history of pain. At 0845 Dr Nowinski came to to make sure her left hip was okay.
At 1030 Dr Kuzma from the spinal group came in. The usual Q's & A's were posed and answered, spent time having mom move legs and manipulating her legs. Said additional review will take place after the MRI.
At 1045 Dr D came in to evaluate mom's pain since the increase in pain medications 111209. She was quite disappointed that mom hasn't been able to walk, sit up, or get out of bed because of the pain, even with all the meds they've been administering. I shared the same concerns and mother expressed her frustration as well. She is contacting the pain management group to see if anything else can be done that might make mobility possible, assured me the MRI is still scheduled and hopes to have the results this afternoon.
At 1200 I asked nurse Debbie to contact the MRI department to see if mom really is on the schedule and will have her MRI soon. She assured me she is still on the list, and will be going some time today.
Happy birthday Val! You're a great sister
At 0840 Dr Fishman from the orthopedic group came in, said he would contact the spinal group and have them do an evaluation. The usual Q's & A's and brief history of pain. At 0845 Dr Nowinski came to to make sure her left hip was okay.
At 1030 Dr Kuzma from the spinal group came in. The usual Q's & A's were posed and answered, spent time having mom move legs and manipulating her legs. Said additional review will take place after the MRI.
At 1045 Dr D came in to evaluate mom's pain since the increase in pain medications 111209. She was quite disappointed that mom hasn't been able to walk, sit up, or get out of bed because of the pain, even with all the meds they've been administering. I shared the same concerns and mother expressed her frustration as well. She is contacting the pain management group to see if anything else can be done that might make mobility possible, assured me the MRI is still scheduled and hopes to have the results this afternoon.
At 1200 I asked nurse Debbie to contact the MRI department to see if mom really is on the schedule and will have her MRI soon. She assured me she is still on the list, and will be going some time today.
Happy birthday Val! You're a great sister
Thursday, November 12, 2009
What We Know So Far - Part 2
I spoke briefly with the Dr this afternoon, the trip to the vascular lab was focused on the circulation in mom's right thigh. Everything was fine, no apparent problems. When asked about the clots . . . well, they weren't looking there. As previously reports an MRI has been ordered, don't know when that will be.
Mom did get up and sat in the chair this afternoon. She lasted for about 35 minutes. She reports it hurts, but the pain medicine seemed to help somewhat. I was out of the room for most of this time and when I came in she was in tremendous pain. When asked, the pain had been there the entire time but she did tough it out. She'll probably do that again tomorrow.
That's about it for today. It's about time for me to call it a day.
Thanks for reading
Mom did get up and sat in the chair this afternoon. She lasted for about 35 minutes. She reports it hurts, but the pain medicine seemed to help somewhat. I was out of the room for most of this time and when I came in she was in tremendous pain. When asked, the pain had been there the entire time but she did tough it out. She'll probably do that again tomorrow.
That's about it for today. It's about time for me to call it a day.
Thanks for reading
What We Know So Far
X-rays were taken yesterday afternoon and the results weren't available until today. When the Dr came to discuss the results, transport was present to take mom to the vascular lab to check the status of her blood clots. The Dr took off with her chart, her nurse was missing and transport was getting impatient. Found the nurse, found the Dr & then found the chart. It was an interesting time in the hallway.
The good news is there are no broken bones or fractures or anything that would indicate what is causing so much pain. There is signs of arthritis as well as bone loss. In consult with ortho the Dr requested an MRI of her back for this afternoon, I hope. We also agreed mom needs to get out of bed and stand/walk/whatever. Her nurse checked with the Dr about giving mom some nutritional supplements as well. Ensure or something like that.
While she was off the floor, I made a quick trip to CVS for supplies. When I returned she was back in her room and I discussed what I discussed with the Dr earlier, explaining that an MRI of her back was being scheduled and she was going to have to get out of bed.
Since I did not get what she wanted from CVS, I dashed off again, giving up a primo parking spot, and returned to see cousin Pat visiting with mom. Seemed like a good time to put this out for everyone and will post more when more is revealed.
The good news is there are no broken bones or fractures or anything that would indicate what is causing so much pain. There is signs of arthritis as well as bone loss. In consult with ortho the Dr requested an MRI of her back for this afternoon, I hope. We also agreed mom needs to get out of bed and stand/walk/whatever. Her nurse checked with the Dr about giving mom some nutritional supplements as well. Ensure or something like that.
While she was off the floor, I made a quick trip to CVS for supplies. When I returned she was back in her room and I discussed what I discussed with the Dr earlier, explaining that an MRI of her back was being scheduled and she was going to have to get out of bed.
Since I did not get what she wanted from CVS, I dashed off again, giving up a primo parking spot, and returned to see cousin Pat visiting with mom. Seemed like a good time to put this out for everyone and will post more when more is revealed.
Wednesday, November 11, 2009
Cards now being accepted
While visiting Mom this evening, I conveyed that many were concerned about her and wanted her to know they were thinking about her. I asked her if she'd like to reconsider her "no cards" statement of last week, and she said yes, she would welcome cards. So, go ahead and mail those cards! It would probably be best if they were sent to her home address as we don't know when she'll be leaving Beaumont or where she'll be going.
Tuesday, November 10, 2009
Tuesday - An Update
I slept in this morning and didn't arrive at Beaumont until after 11:00 a.m. As a result of that I missed seeing the cardio people as well as the physician. I guess it's true, you snooze you loose.
C'est la vie.
The report I received from nurse Colleen was cardio was here just to make sure there were no complications for yesterdays event. The physician was here to discuss having PT come for an evaluation before she could be discharged to the sub-acute facility (aka Heartland). The order has been placed for that to take place, but it may not be until tomorrow.
The Reverend Miller was visiting when I called about when I would be arriving. He called me afterwards and talked about his visit sharing with me that when asked, mother rated her pain at a 1. She hadn't been up and moving around so that makes sense. He also expressed that her attitude was good.
When I arrived mom was indisposed, she was up on the bedside throne but was unable to sit up in the chair due to the pain. When I returned to the room, she was back in bed and obviously in pain. She told me that she was sure the nurses and staff felt she was being a nuisance because she couldn't do anything for herself and she was a nuisance to her children because she couldn't do anything for herself. If this sounds familiar to anyone reading this, you can imagine the rest of the conversation and tears. My people refer to this as a pity party. Wish I had an appropriate hat.
Prior to lunch, because the pain was so bad, a .5 mg dose of dilantin was administered to help alleviate the pain. At that time, I asked nurse Colleen if it might be prudent to persue the cause of the pain, rather than continue to treat the pain. She sent a text for the doctor to call the room while I stepped out to return a couple of calls. When I returned I believe I missed the Dr's call since we haven't received a call, or mom ignored the phone.
After sitting in the room for 4 hours, I stepped out to get my computer out of my car. Upon my return mom said there were two visits from Drs. One from the gastro folks to let her know they weren't going to do the endoscopy - same information we received last night. She couldn't remember who the other one was. Damn my luck!
At this point we know nothing more than we did yesterday. Pain continues, PT has been ordered for an evaluation and we are waiting on that. Since I have been unable to contact the Dr regarding cause of the pain, I plan on being here early in the morning to catch all these wonderful professionals before they go into hiding.
Thanks for listening.
C'est la vie.
The report I received from nurse Colleen was cardio was here just to make sure there were no complications for yesterdays event. The physician was here to discuss having PT come for an evaluation before she could be discharged to the sub-acute facility (aka Heartland). The order has been placed for that to take place, but it may not be until tomorrow.
The Reverend Miller was visiting when I called about when I would be arriving. He called me afterwards and talked about his visit sharing with me that when asked, mother rated her pain at a 1. She hadn't been up and moving around so that makes sense. He also expressed that her attitude was good.
When I arrived mom was indisposed, she was up on the bedside throne but was unable to sit up in the chair due to the pain. When I returned to the room, she was back in bed and obviously in pain. She told me that she was sure the nurses and staff felt she was being a nuisance because she couldn't do anything for herself and she was a nuisance to her children because she couldn't do anything for herself. If this sounds familiar to anyone reading this, you can imagine the rest of the conversation and tears. My people refer to this as a pity party. Wish I had an appropriate hat.
Prior to lunch, because the pain was so bad, a .5 mg dose of dilantin was administered to help alleviate the pain. At that time, I asked nurse Colleen if it might be prudent to persue the cause of the pain, rather than continue to treat the pain. She sent a text for the doctor to call the room while I stepped out to return a couple of calls. When I returned I believe I missed the Dr's call since we haven't received a call, or mom ignored the phone.
After sitting in the room for 4 hours, I stepped out to get my computer out of my car. Upon my return mom said there were two visits from Drs. One from the gastro folks to let her know they weren't going to do the endoscopy - same information we received last night. She couldn't remember who the other one was. Damn my luck!
At this point we know nothing more than we did yesterday. Pain continues, PT has been ordered for an evaluation and we are waiting on that. Since I have been unable to contact the Dr regarding cause of the pain, I plan on being here early in the morning to catch all these wonderful professionals before they go into hiding.
Thanks for listening.
Monday, November 9, 2009
This Just In
After becoming quite frustrated with the lack of information being provided I contacted patient services to speak to an ombusman. After explaining the situation, the nurse manager for mom's floor got involved. I met with her and her nurse Colleen to discuss just what is going on. I explained my frustration that no one seemed to be accepting responsibility and the admitting doctor wasn't very clear about what we were going to do next. I learned that PT/OT has been ordered for tomorrow and discharge is planned for Wednesday. I also learned that no blood thinners are ordered, she's to resume taking baby aspirin. Efforts will be made to get her up this evening, at least to sit in a chair. She's looking forward to eating something, hasn't eaten since last night, but says she's okay, not hungry, feeling fine and can't complain about a thing.
I think it's the Versed.
I think it's the Versed.
The Never Ending Story
Without elaborating on Val's previous entry, I'll just say that mom is still in a lot of pain, not only in her legs but her entire body. Medication that is being administered does not seem to be doing the job. She was offered some medication earlier but refused it.
Around 4 this morning she vomitted several times. Staff cleaned her up and when I arrived at 7 this morning she shared what had happened and that she hadn't slept since. Breakfast was not served because she is scheduled for her procedure at 2:30 this afternoon. Her nurse, Colleen, came in, did her assessment and talked with mom and I. Mom said her pain level is at 10, I explained that she has a very high pain threshold and when she complains of pain, it's serious. Her regular meds were administered to include pain medication, all on an empty stomach. She vomitted that up within a 1/2 hour.
Saturday morning her nurse, Debbie, noticed some redness on her butt. Not surprising since she has been in bed since Wednesday. I requested we see about getting an air mattress or specialty bed in to help alleviate that problem. Yesterday I learned that the Dr had signed off on the order for the bed, however, there wasn't a supervisor available to confirm and place the order. It being Sunday and all. This morning the midnight nurse manager approached me, discussed the procedural confusion, apparently there was someone available to confirm and place the order yesterday, and assured me the bed would be here within an hour. This was a 8 a.m. Around 10 I learned that the bed (mattress with pump) was not kept on site, the order had to be placed, processed, loaded on a delivery vehicle, delivered and set up. The turn around time is 4 hours, I was told they had until noon. My dissatisfaction was expressed.
The admitting Dr came to see mom this afternoon. Additional discussion of pain ensued. Mom stressed again the continuing problem throughout her body. I shared, again, that mom's pain tolerance would kill a rhino and so far, nothing that has been administered has resolved the pain issue. The Dr ordered IV pain meds, Dilaudid I think.
There is some good news, the bed was delivered at 11:58, within the 4 hour parameter, and Discharge Planning let me know that Heartland Oakland (where she was last spring for her hip rehab) is holding a bed for her. That made me smile; the admitting problem hasn't been resolved, but they've got her aftercare handled.
Later y'allPublish Post
Around 4 this morning she vomitted several times. Staff cleaned her up and when I arrived at 7 this morning she shared what had happened and that she hadn't slept since. Breakfast was not served because she is scheduled for her procedure at 2:30 this afternoon. Her nurse, Colleen, came in, did her assessment and talked with mom and I. Mom said her pain level is at 10, I explained that she has a very high pain threshold and when she complains of pain, it's serious. Her regular meds were administered to include pain medication, all on an empty stomach. She vomitted that up within a 1/2 hour.
Saturday morning her nurse, Debbie, noticed some redness on her butt. Not surprising since she has been in bed since Wednesday. I requested we see about getting an air mattress or specialty bed in to help alleviate that problem. Yesterday I learned that the Dr had signed off on the order for the bed, however, there wasn't a supervisor available to confirm and place the order. It being Sunday and all. This morning the midnight nurse manager approached me, discussed the procedural confusion, apparently there was someone available to confirm and place the order yesterday, and assured me the bed would be here within an hour. This was a 8 a.m. Around 10 I learned that the bed (mattress with pump) was not kept on site, the order had to be placed, processed, loaded on a delivery vehicle, delivered and set up. The turn around time is 4 hours, I was told they had until noon. My dissatisfaction was expressed.
The admitting Dr came to see mom this afternoon. Additional discussion of pain ensued. Mom stressed again the continuing problem throughout her body. I shared, again, that mom's pain tolerance would kill a rhino and so far, nothing that has been administered has resolved the pain issue. The Dr ordered IV pain meds, Dilaudid I think.
There is some good news, the bed was delivered at 11:58, within the 4 hour parameter, and Discharge Planning let me know that Heartland Oakland (where she was last spring for her hip rehab) is holding a bed for her. That made me smile; the admitting problem hasn't been resolved, but they've got her aftercare handled.
Later y'allPublish Post
Sunday, November 8, 2009
Pain
I wish I could write that Mom is resting comfortably, but sadly, she isn't. The pain meds she gets hardly touches the discomfort of the blood clots. She needs to move her legs to keep from getting other clots, but her legs are so painful that she can't move them. Added to this is the uncertainty of her other conditions and the beginnings of a bed sore. She's understandably not a happy camper. Monday she's scheduled to have filters inserted in her leg veins to keep the clots from migrating to other parts of her body, where they could cause a stroke or heart attack. We thought she'd be having the gastro scope done too, but apparently that's off the schedule. A specialty bed (one designed to help prevent bed sores) was ordered for her, but Dave (who arrived Friday) was told today that because it was Sunday, the order couldn't be filled. This is a little hard to phantom, in that Beaumont is a 1000+ bed hospital and it seems strange that a department wouldn't be staffed every day of the week. Ah, hospitals.
Friday, November 6, 2009
No cards, no calls
Yesterday evening I visited Ruth. She seemed to be okay, although annoyed she has to use a bed pan and can't walk. She says her legs don't hurt as long as she doesn't try to do anything. Being in the hospital is rarely restful, and this time she has a noisy roommate making it more so.
Her nurse said that Mom is supposed to have an upper GI endoscopy sometime today. At the hospital yesterday afternoon, Byron ran into one of her docs who implied that they were going to put in filter to keep the clots from migrating elsewhere in her body (like, her heart), but the nurse wasn't aware of that. Apparently they're addressing the bleeding issue first. I emphasized to the nurse, with Mom present, that our objective is for her to be pain-free and comfortable.
Ruth was adament about not having any visitors, calls, or cards. "I have enough cards to last me until I'm 185!" (She doesn't throw any of them out, so she's probably right about this.) I volunteered to disconnect her phone, but she said, "no one knows I'm here, so I shouldn't be getting any calls." I think it's mostly because she doesn't want people seeing her in this state (horizontal with bad hair). She is, after all, a very private person. Yet, I know she appreciates peoples' thoughts.
Dave will be arriving later this afternoon, and I'll return Saturday morning.
Her nurse said that Mom is supposed to have an upper GI endoscopy sometime today. At the hospital yesterday afternoon, Byron ran into one of her docs who implied that they were going to put in filter to keep the clots from migrating elsewhere in her body (like, her heart), but the nurse wasn't aware of that. Apparently they're addressing the bleeding issue first. I emphasized to the nurse, with Mom present, that our objective is for her to be pain-free and comfortable.
Ruth was adament about not having any visitors, calls, or cards. "I have enough cards to last me until I'm 185!" (She doesn't throw any of them out, so she's probably right about this.) I volunteered to disconnect her phone, but she said, "no one knows I'm here, so I shouldn't be getting any calls." I think it's mostly because she doesn't want people seeing her in this state (horizontal with bad hair). She is, after all, a very private person. Yet, I know she appreciates peoples' thoughts.
Dave will be arriving later this afternoon, and I'll return Saturday morning.
Thursday, November 5, 2009
Back at Beaumont
Ruth has been doing okay at home until a couple days ago, when she began having excruciating pain. Byron ended up taking her to Beaumont Hospital's ER yesterday afternoon. She was diagnosed with blood clots in both legs and anemia, received two units of blood and was admitted. At this writing I don't know how long she'll be there, but if anyone is interested, her room number is 8667. Stay tuned for further developments.
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