Day 25
Today’s report comes form a compilation of emails from my Dad and one from my brother. I thought it would be interesting to use their words:
Dad:
Down for GES [Gastric Emptying Study] when I got here. She has been nervous about GES. She has the symptom of being nauseated AFTER eating. Threw up a tiny bit last evening after having some grilled chicken. Became rather discouraged because she felt she was doing very well during the day. Should be back soon from nuclear.
Counts continue to be good.
WBC 12.50.
Hemoglobin 8.7.
Platelet 337.
RBC 2.89.
ANC 9.25.
Aside from her food intake, she is ready to be discharged. Was able to do steps and sit stands. Will just have to wait and see what happens today after GES.
Mom came back from GES. She was on hold for possible more frames and then nuclear called to say she did not need to go back. Taken off NPO. Waiting for English muffin. Had radioactive scrambled eggs for GES.
She is in better frame of mind. Not so nervous about GES.
Discontinued Micafungin. Waiting for some last blood culture before discontinuing Zosyn. Increasing night dosage of Neurontin to see if that helps with neuropathy.
NP came in. Emphasize continuing exercise and nutritional intake. Talked about discharge Friday at the earliest or next week at the latest contingent on her continuing on her current course.
Mom is getting cleaned up CHG and is going to put on civilian clothes. We will then do laps. Also step-ups, sit-stand, and upper body OT things.
Brother:
Walked 24 laps today. She was very tired tonight with the long day. I suspect she may have some carryover tomorrow since she did not get a nap at all and the testing this morning was long.
Back to me:
My brother is staying over in Buffalo at Hope Lodge with my Dad tonight. Looks like the weather is pretty bad, so he may stay another day. I arrive back in Buffalo in the afternoon (if my flights go as planned). It’s been a whirlwind of a week between the work I am doing and keeping track of what has been happening with my Mom. I look forward to being back there.
Forums
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Hey all,
It's the end of Day 26 and I have been awake since the beginning of Day 25, so I am going to get some sleep. I just moved back into Hope Lodge after getting back to Buffalo today. Also, it is 7 degrees F outside (-14 C)!
I will get caught up tomorrow. I have all sorts of information about what has been happening and where we go from here.
It's the end of Day 26 and I have been awake since the beginning of Day 25, so I am going to get some sleep. I just moved back into Hope Lodge after getting back to Buffalo today. Also, it is 7 degrees F outside (-14 C)!
I will get caught up tomorrow. I have all sorts of information about what has been happening and where we go from here.
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Since I have been gone, a lot has happened. For the period January 1- 7, I have kept you all up-to-date based on reports from my dad and brother. My dad has kept his own written log, as I do, and as I have gone through it and found some other things to tell you. Just some details (since I am a detail-oriented person).
Catch up Section
Day 26 (January 7, 2015)
As of 6 a.m. this morning, the TPN is finished. Also the Zosyn, which was a 7-day course from the start of her first fever on January 29. As of tonight, acyclovir, which is the final IV-drug, will be switched to pills, leaving only the electrolyte protocol on the IV.
Last night, the evening of Day 25, her 8 p.m. reading showed a fever, triggering another blood culture. This also triggered more frequent vitals checks overnight. Because of this, it has been determined that there will be no discharge before Monday.
Counts:
WBC: 12.10
Hemoglobin: 8.3
RBC: 2.72
Platelets: 301
The red blood cells are trying to get some attention and taking their time. The hemoglobin is the number to watch, since she gets a blood transfusion if it drops to 8.0. The WBC are just showing off, now spiking above the normal range.
This being Wednesday, it’s vitamin K day, used to promote clotting.
Since before I left, the nurses have had trouble getting blood from the CVL. They ask my mom to breath deep, which seems to help. The other day, they used TPA to get blood. Imagine the vein with multiple “ports” from which blood is drawn from that same vein into each of the 5 lumens. On a given day, one lumen might give up more blood than another, as a port could be up against the wall of the vein. Also, a sort of flap can form and block the way. When meds are pushed, it opens and allows the meds in, but simply closes when they try to draw blood. The TPA is administered via a syringe. Some people never have a problem like this and others do. I had heard of TPA used for stroke patients. I thought this was interesting.
Now that she is off the TPN, my mom really has to work on getting enough calories. She actually woke up hungry for breakfast (though she doesn’t remember what she had). For lunch, she had chicken noodle soup, fruit, and vanilla pudding. She didn’t like the pudding. And, for dinner, she had soup, ice cream and tea. Dinner was the first meal that she completely finished. She is finding the Isopur supplement too sweet. It was something she drank a lot of before the mucositis, but can no longer tolerate it. This is a world of changing taste buds!
My observation of my mom after being away a week is that her color is better, she stays awake for long periods of time and has control over staying awake, and she can tolerate sitting in the chair for an entire afternoon.
It was also clear to me very quickly that she was a little confused at times: Losing words, no sense of time, and saying things backwards. My brother told me that he and my Dad noticed it too and that it came on during the day. She had started the day responding to the NP when asked how she felt, “Terrific”. But, as the day went on, she started to lose what had happened earlier in the day and to forget conversations that weren’t immediate.
After the temperature spike last night, her temps were in the normal range all day. Her BP is holding and everyone is generally very pleased with themselves. The doctor is confident that the week of sleeping was a reaction to the Cymbalta and possibly how it reacted with the Ativan. They cannot figure out what is causing the fever. She had a blood culture last night. But her counts are fine – in fact, her white blood cell count is spiking, so they don’t have a reason for it right now.
Just before we left, the 8 p.m. vitals check showed a temp of 38 degrees C (100.4 F). They even took it twice to be sure. So ... blood culture. The good news: After the magnesium finished, there were no meds on the IV pole – so FREEDOM.
My mom gets to sleep without the ever-present companion.
There are a number of changes since I left. The decorations are gone, and the room looks a little bare. Roswell is back to normal after the holidays, though a few trees remain in certain corners.
I certainly feel like I have been in a different world over this past week.
-Allison
Catch up Section
- Contact and droplet precautions have been lifted. No one remembers what day this happened. But when I left on December 31, they were in place. I imagine this happened when the nasal wash came back clear.
- Lomodil (for diarrhea) was stopped on January 1 with Imodium continuing to be PRN.
- The last day of Caphasol (swish and spit) was January 4.
- My mother had some diarrhea on January 4th. Hard to know if it’s a hold-over or from some of the antibiotics.
- The adhesive of the dressing over the CVL has started to irritate my mom’s skin. On January 5, it was replaced with a ‘Sensitive Skin Dressing’ and this product (in photo) is used on the sensitive area. The nurse on that day worked hard to find something that would work for her.
- detachol.jpg (336.6 KiB) Viewed 609 times
- On January 5, she had a case of the shakes and was very cold. They have a “fridge” – but it’s warm – that’s filled with blankets, and they used one of them on her. This was the night before the gastric emptying study and she was very nervous about it.
- Gastric emptying study (January 6) – They took her to nuclear for this, where she ate radioactive scrambled eggs. Then, their progess through the body was watched over the course of a few hours with a scanner that tracks the path of the radioactive material. The purpose was to determine the rate of food emptying from the stomach. This was in response to her always feeling full. However, the results showed that the rate of emptying was normal.
- Remeron (mirtazapine) was added to the list of medications – at night to help her sleep.
- Zofran (for nausea), which was every 6 hours, was stopped on January 6.
Day 26 (January 7, 2015)
As of 6 a.m. this morning, the TPN is finished. Also the Zosyn, which was a 7-day course from the start of her first fever on January 29. As of tonight, acyclovir, which is the final IV-drug, will be switched to pills, leaving only the electrolyte protocol on the IV.
Last night, the evening of Day 25, her 8 p.m. reading showed a fever, triggering another blood culture. This also triggered more frequent vitals checks overnight. Because of this, it has been determined that there will be no discharge before Monday.
Counts:
WBC: 12.10
Hemoglobin: 8.3
RBC: 2.72
Platelets: 301
- Blood Counts.jpg (328.09 KiB) Viewed 609 times
The red blood cells are trying to get some attention and taking their time. The hemoglobin is the number to watch, since she gets a blood transfusion if it drops to 8.0. The WBC are just showing off, now spiking above the normal range.
This being Wednesday, it’s vitamin K day, used to promote clotting.
Since before I left, the nurses have had trouble getting blood from the CVL. They ask my mom to breath deep, which seems to help. The other day, they used TPA to get blood. Imagine the vein with multiple “ports” from which blood is drawn from that same vein into each of the 5 lumens. On a given day, one lumen might give up more blood than another, as a port could be up against the wall of the vein. Also, a sort of flap can form and block the way. When meds are pushed, it opens and allows the meds in, but simply closes when they try to draw blood. The TPA is administered via a syringe. Some people never have a problem like this and others do. I had heard of TPA used for stroke patients. I thought this was interesting.
Now that she is off the TPN, my mom really has to work on getting enough calories. She actually woke up hungry for breakfast (though she doesn’t remember what she had). For lunch, she had chicken noodle soup, fruit, and vanilla pudding. She didn’t like the pudding. And, for dinner, she had soup, ice cream and tea. Dinner was the first meal that she completely finished. She is finding the Isopur supplement too sweet. It was something she drank a lot of before the mucositis, but can no longer tolerate it. This is a world of changing taste buds!
My observation of my mom after being away a week is that her color is better, she stays awake for long periods of time and has control over staying awake, and she can tolerate sitting in the chair for an entire afternoon.
It was also clear to me very quickly that she was a little confused at times: Losing words, no sense of time, and saying things backwards. My brother told me that he and my Dad noticed it too and that it came on during the day. She had started the day responding to the NP when asked how she felt, “Terrific”. But, as the day went on, she started to lose what had happened earlier in the day and to forget conversations that weren’t immediate.
After the temperature spike last night, her temps were in the normal range all day. Her BP is holding and everyone is generally very pleased with themselves. The doctor is confident that the week of sleeping was a reaction to the Cymbalta and possibly how it reacted with the Ativan. They cannot figure out what is causing the fever. She had a blood culture last night. But her counts are fine – in fact, her white blood cell count is spiking, so they don’t have a reason for it right now.
Just before we left, the 8 p.m. vitals check showed a temp of 38 degrees C (100.4 F). They even took it twice to be sure. So ... blood culture. The good news: After the magnesium finished, there were no meds on the IV pole – so FREEDOM.
- IV pole - All alone.jpg (44.72 KiB) Viewed 609 times
My mom gets to sleep without the ever-present companion.
There are a number of changes since I left. The decorations are gone, and the room looks a little bare. Roswell is back to normal after the holidays, though a few trees remain in certain corners.
I certainly feel like I have been in a different world over this past week.
-Allison
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 27
When my mom is doing her nails, you know things are heading back to ‘normal’.
The fever reported at 8 p.m. last night meant more frequent interruptions in the night. The blood draw at 3 a.m. meant being put back on the IV pole to receive potassium and a unit of blood.
While we were still at Hope Lodge, I got an iMessage from her. This is not really remarkable except that, over the last few weeks, she could not have done that or thought to do that. It’s a good sign.
My Dad and I arrived just as my mom was finishing breakfast. She was polishing off a bowl of oatmeal and very alert. She was feeling much more energetic after the blood transfusion.
The NP had already been in and had noticed that my mom’s right hand and arm were swollen. This was a good catch! A Doppler ultrasound test was ordered to see if there was a blood clot.
Also, the nyastatin was discontinued, though her tongue is still a bit of a brown color, it was felt that the infection has passed. And, starting last night, she is on amoxicillin clavulanate (Augmentin). My mom calls it “the football”. It’s kind of big. The amoxicillin part is similar to penicillin, and the clavulanate part is to help prevent bacteria from going after the amoxicillin.
While her temps had gone down overnight, the 8 a.m. vitals check showed another fever of 38 degrees C (100.4 F).
Counts:
WBC: 16.38
Hemoglobin: 7.7
RBC: 2.61
Platelets: 309
After breakfast, my mom got herself CHG’ed and dressed. This is the first time she has been able to this without help since Day 9. Once her potassium was done, she was again separated from her IV pole. She was having some diarrhea, perhaps from the new antibiotic, and asked for some Imodium.
We headed out for a walk. It was odd seeing her walk down the hallway unattached. We had barely made it a few doors away when the nurse came to get her ready for the ultrasound. It was 10:45 a.m. She had to ride a rolling bed. Seemed odd to go from freely walking to being transported in a bed.
In ultrasound they took a close look at the area about her CVL. The swelling is in her right arm and the CVL is on her right side. We were barely back in the room (11:15 a.m.) when the nurse came in to tell us she had a STAT order of Lovenox (enoxaparin) of 60 mg twice a day. It was clear to us that she did, indeed, have a clot. She has been on Lovenox 40 mg once a day since the transplant. She will get this every 12 hours.
Just a little while later the nurse also took some blood for the an ESR (erythrocyte sedimentation rate) test, which tests for inflammation. This test was ordered before the ultrasound had detected the clot.
For the first time in a few weeks, she decided to head out to get on the sit-down cross trainer exerciser. 10 minutes on this. It had been since before the mucositis that she has been on this, and it took a bit to remember how to use it! The PT came by and visited, helping the 10 minutes to go by quicker. She told us that she would be by tomorrow (Friday) to do her PT discharge evaluation, as she will be away next week. This evaluation will be similar to the evaluation that happened in the lead up to admission.
The exerciser was followed by 6 laps, during which my mom commented that she was hungry. (Hooray!)
While waiting in the chair for lunch, she did some spirometry and read the paper. By now, I am discovering that she has very little memory of the last few weeks. I suppose that is just as well. In particular, she has no memory of the day she had to go to head and neck for the scope. Other things spark a bit of recognition when we remind her, but that particular day is a blank. In addition, she needs to re-learn how to use her cell phone. It is also clear that she will be discovering her Christmas presents all over again.
After a lunch of soup and part of an egg salad sandwich, she did 5 more laps and then was more than ready for a nap. She had just settled in at 1:30 p.m. when the charge nurse came back to confirm what we had already guessed. My Mom got in a good nap until 2:45 p.m. when Infection Control came in. They are replacing all of the Purell dispensers on the wall to automated ones that you don’t have to touch. I suppose now the problem will be keeping up all the batteries, but I had often wondered about all the touching of the dispensers. I guess that’s why a place like this has a department called Infection Ccontrol! One person came in and took the old one off the wall, and, as he was leaving, another person came in with the new one, attached it, and left. They had it done in 60 seconds!
Just after 3 p.m. the NP came back to tell us about the clot and said that it was sub-clavian near the CVL – as we all suspected. And, it is possible that it is what is causing the fever. She explained about the Lovenox and that Saturday, in the middle of the night, there would be a blood draw to test if the dosing of the Lovenox is appropriate. She thought that discharge would be early next week and that the line will come out on that day. The Lovenox will be held in advance and then started again after the CVL is out. Then, because she has a clot, the Lovenox will be continued for 3 months with injections at home. The purpose is so that the clot doesn’t get worse while the body works to re-absorb it, which it will do naturally. In the meantime, the only restriction is bleeding precautions.
My mom’s gabapentin dose was increased at night a few days ago and that seems to be working well.
The afternoon vitals were right on the heels of the NP (everyone tends to come all at once), and the temp was 37.7 C (99.9 F). This is good.
We got in more laps and even some step-ups. These are my mom’s least favorite thing. Tomorrow, the PT will want her to do 50 as part of her evaluation.
The doctor came by at 5:30 p.m. and reviewed the clot information and had a slightly different thought about the Lovenox. He is ‘fairly confident’ that the clot is due to the CVL and that once it comes out, the clot should resolve. He will take a closer look at the scan, but he said that Lovenox should only be needed for 2 to 3 weeks. He also said that, technically, there is no other reason for the clot. We asked about the vitamin K that is given 3 times a week and he said that it would be discontinued after tomorrow.
He reiterated the early next week discharge, saying Monday was likely.
Dinner was something new – mac and cheese with baby carrots and broccoli. My mom has been thinking about the mac and cheese all day. It was a huge portion and very filling, but she enjoyed it.
Some sit / stands and then an IV-less shower and some very lightweight pajamas (the room is very warm), and we are back to where I started in this post. Her nails. That is something that my mom always does. It’s part of her. And her doing her nails is a big sign of her ‘being back’.
Her 8 p.m. temp was 37.2 C (99 F). Whew.
My Dad went home today to get the mail and get some things done. It looks like the storm that is going to hit overnight is going to stand between him and Roswell for a day or too.
So ... a new day. New things. And when I told her it was good to have her back, she said that it was good to be back.
I should say so.
When my mom is doing her nails, you know things are heading back to ‘normal’.
The fever reported at 8 p.m. last night meant more frequent interruptions in the night. The blood draw at 3 a.m. meant being put back on the IV pole to receive potassium and a unit of blood.
While we were still at Hope Lodge, I got an iMessage from her. This is not really remarkable except that, over the last few weeks, she could not have done that or thought to do that. It’s a good sign.
My Dad and I arrived just as my mom was finishing breakfast. She was polishing off a bowl of oatmeal and very alert. She was feeling much more energetic after the blood transfusion.
The NP had already been in and had noticed that my mom’s right hand and arm were swollen. This was a good catch! A Doppler ultrasound test was ordered to see if there was a blood clot.
Also, the nyastatin was discontinued, though her tongue is still a bit of a brown color, it was felt that the infection has passed. And, starting last night, she is on amoxicillin clavulanate (Augmentin). My mom calls it “the football”. It’s kind of big. The amoxicillin part is similar to penicillin, and the clavulanate part is to help prevent bacteria from going after the amoxicillin.
While her temps had gone down overnight, the 8 a.m. vitals check showed another fever of 38 degrees C (100.4 F).
Counts:
WBC: 16.38
Hemoglobin: 7.7
RBC: 2.61
Platelets: 309
After breakfast, my mom got herself CHG’ed and dressed. This is the first time she has been able to this without help since Day 9. Once her potassium was done, she was again separated from her IV pole. She was having some diarrhea, perhaps from the new antibiotic, and asked for some Imodium.
We headed out for a walk. It was odd seeing her walk down the hallway unattached. We had barely made it a few doors away when the nurse came to get her ready for the ultrasound. It was 10:45 a.m. She had to ride a rolling bed. Seemed odd to go from freely walking to being transported in a bed.
- Chariot to Ultrasound.jpg (44.1 KiB) Viewed 586 times
In ultrasound they took a close look at the area about her CVL. The swelling is in her right arm and the CVL is on her right side. We were barely back in the room (11:15 a.m.) when the nurse came in to tell us she had a STAT order of Lovenox (enoxaparin) of 60 mg twice a day. It was clear to us that she did, indeed, have a clot. She has been on Lovenox 40 mg once a day since the transplant. She will get this every 12 hours.
Just a little while later the nurse also took some blood for the an ESR (erythrocyte sedimentation rate) test, which tests for inflammation. This test was ordered before the ultrasound had detected the clot.
For the first time in a few weeks, she decided to head out to get on the sit-down cross trainer exerciser. 10 minutes on this. It had been since before the mucositis that she has been on this, and it took a bit to remember how to use it! The PT came by and visited, helping the 10 minutes to go by quicker. She told us that she would be by tomorrow (Friday) to do her PT discharge evaluation, as she will be away next week. This evaluation will be similar to the evaluation that happened in the lead up to admission.
The exerciser was followed by 6 laps, during which my mom commented that she was hungry. (Hooray!)
- and it's not an IV pole
- Walking Companion.jpg (44.2 KiB) Viewed 586 times
While waiting in the chair for lunch, she did some spirometry and read the paper. By now, I am discovering that she has very little memory of the last few weeks. I suppose that is just as well. In particular, she has no memory of the day she had to go to head and neck for the scope. Other things spark a bit of recognition when we remind her, but that particular day is a blank. In addition, she needs to re-learn how to use her cell phone. It is also clear that she will be discovering her Christmas presents all over again.
After a lunch of soup and part of an egg salad sandwich, she did 5 more laps and then was more than ready for a nap. She had just settled in at 1:30 p.m. when the charge nurse came back to confirm what we had already guessed. My Mom got in a good nap until 2:45 p.m. when Infection Control came in. They are replacing all of the Purell dispensers on the wall to automated ones that you don’t have to touch. I suppose now the problem will be keeping up all the batteries, but I had often wondered about all the touching of the dispensers. I guess that’s why a place like this has a department called Infection Ccontrol! One person came in and took the old one off the wall, and, as he was leaving, another person came in with the new one, attached it, and left. They had it done in 60 seconds!
- Purell Before.jpg (28.66 KiB) Viewed 586 times
- Purell After.jpg (27.98 KiB) Viewed 586 times
Just after 3 p.m. the NP came back to tell us about the clot and said that it was sub-clavian near the CVL – as we all suspected. And, it is possible that it is what is causing the fever. She explained about the Lovenox and that Saturday, in the middle of the night, there would be a blood draw to test if the dosing of the Lovenox is appropriate. She thought that discharge would be early next week and that the line will come out on that day. The Lovenox will be held in advance and then started again after the CVL is out. Then, because she has a clot, the Lovenox will be continued for 3 months with injections at home. The purpose is so that the clot doesn’t get worse while the body works to re-absorb it, which it will do naturally. In the meantime, the only restriction is bleeding precautions.
My mom’s gabapentin dose was increased at night a few days ago and that seems to be working well.
The afternoon vitals were right on the heels of the NP (everyone tends to come all at once), and the temp was 37.7 C (99.9 F). This is good.
We got in more laps and even some step-ups. These are my mom’s least favorite thing. Tomorrow, the PT will want her to do 50 as part of her evaluation.
The doctor came by at 5:30 p.m. and reviewed the clot information and had a slightly different thought about the Lovenox. He is ‘fairly confident’ that the clot is due to the CVL and that once it comes out, the clot should resolve. He will take a closer look at the scan, but he said that Lovenox should only be needed for 2 to 3 weeks. He also said that, technically, there is no other reason for the clot. We asked about the vitamin K that is given 3 times a week and he said that it would be discontinued after tomorrow.
He reiterated the early next week discharge, saying Monday was likely.
Dinner was something new – mac and cheese with baby carrots and broccoli. My mom has been thinking about the mac and cheese all day. It was a huge portion and very filling, but she enjoyed it.
Some sit / stands and then an IV-less shower and some very lightweight pajamas (the room is very warm), and we are back to where I started in this post. Her nails. That is something that my mom always does. It’s part of her. And her doing her nails is a big sign of her ‘being back’.
Her 8 p.m. temp was 37.2 C (99 F). Whew.
My Dad went home today to get the mail and get some things done. It looks like the storm that is going to hit overnight is going to stand between him and Roswell for a day or too.
So ... a new day. New things. And when I told her it was good to have her back, she said that it was good to be back.
I should say so.
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 28
And we wait.
After an uneventful night, other than being reattached to the IV for potassium and magnesium, the 8 a.m. vitals check showed the dreaded 38 degrees (100.4 F). So, another blood culture. Getting blood from the CVL is proving to be a challenge. It took the nurse 4 tries (4th lumen) to get blood. All these cultures get taken at each fever each 24 hours. So if there are 2 fevers inside 24 hours, it’s just the one culture. The culture from January 4th is showing preliminarily to be negative, though it won’t be final until January 11. I’m told that, in general, if a culture grows fast, it is a more aggressive bacteria, and if it grows slowly it’s easier to treat.
Waiting for the cultures
Yesterday’s ESR came back high. This indicated inflammation. It seems this test is also done for unexplained fevers. Though, based on the enormous size of my mom’s right arm, this is not a surprise! In reading about ESR, I see that an abnormal reading can also be due to the multiple myeloma.
It was a pretty big storm that blew through here last night and, though it was out of downtown Buffalo by 8 a.m., it left and hung out over the south towns for the rest of the day. We noticed all new faces on the housekeeping staff who said that 12 people called out just in that department. Tough commute for lots of people. Also, the 219, the 90, the 190, the skyway, etc, were all closed as of last night. My Dad will be staying in Pennsylvania at least another day since the road between us is closed.
Waiting out the storm
While I arrived a little earlier than usual, others were a little late and I caught the daily weighing that happens and the NP coming in. She thought that the arm swelling was a little bit increased. She had the labs and was pleased that the WBC had come down after spiking for a few days. The ANC wasn’t available yet as the lab was running behind. The fever had just been detected before the NP came in, so she hadn’t heard about it yet. She thinks that my mom is eating well and confirmed Lovenox two times a day through tomorrow when they do the blood test check on the dose. There has been no diarrhea since last night.
Counts:
WBC: 10.18 (completely normal)
Hemoglobin: 8.9 (up from 7. 7 yesterday)
Platelets: 305
RBC: 3.01
ANC: 8.45
She said that to be discharged, my mom needs 24 hours without a fever. We also discussed the antibiotics; the current one is Augmentin (amoxicillin and clavulanate), which has a 14-day course (started on January 7), and tomorrow will start on Bactrim (sulfamethoxazole and trimethoprim), which will have a one-year course.
Waiting for the fever
The doctor appeared early today at 9:45 a.m. and said the arm and hand swelling will take a day or two to go down. He said that he was tempted to have the CVL line pulled now and go to a peripheral IV. Because of the morning Lovenox dose, this would have to wait until tomorrow morning. He felt that this would be the fastest way to see what is going on and that the Lovenox would be more effective. We also talked about the temperature spike, given that my mother was fine at night. He wondered if perhaps that was just her daily temperature variation. He took a note and dashed out of the room.
Waiting to hear about the CVL
Breakfast, eaten before all of this activity, was a bowl of Cheerios and milk and some coffee. After getting CHG’ed and changed, it was time to start the lapping. Since she was attached to the IV pole, we didn’t have quite the freedom as yesterday. But, 5 laps down.
The 10:45 a.m. vitals showed her temp way down to 36.6 C (97.7 F)! So odd.
As promised, the PT came by at 11:30 a.m. for the discharge evaluation. Normally, this would be done on discharge day, but the PT is going away for a week. It’s my guess that discharge day will be very busy, so this is just as well. She started right in with 50 step-ups! My mom handled it well, resting after 25. I was impressed, as she had not done this many in several weeks. The PT checked her heart rate and waiting to see how long it took to recover (about 2 minutes).
Then she had her sit down and checked her range of arm movement and then some strength checks on the arms and legs. Next, was balance tests: Standing with feet together, arms crossed and eyes closed. Then standing on one foot for 30 seconds and the other for 30 seconds (these were hard and only could hold a few seconds). Lastly was as many sit to stands as she could do in 30 seconds (9).
As everyone keeps saying, the PT said that discharge is planned for Monday if my mom can avoid a fever. She stressed that leaving the hospital, where food is brought to you, the bathroom is close, etc, can be very fatiguing. She said not to be surprised if my mom was more tired once out of the hospital and that this was normal. If she is very fatigued after a week, then to be sure to tell someone at her clinic appointment.
The key to the recovery now, once the fatigue passes, will be to keep moving. Walking, steps ups, sit to stands. Due to her age and the disease, she is at a higher risk for osteoporosis and osteopenia. She said that walking is the best way to prevent this – that the vibration of walking stimulates the bone growth, as does any kind of ‘pounding.’ Any kind of exercise that promotes muscle growth will also work to strengthen the bone. Exercise is key. Move as much as possible based on tolerance.
The PT left, but not before putting the Discharge Checklist in the holder on the door and signing off on her part.
Waiting for the rest!
After a little recovery, 5 more laps while waiting for lunch. Lunch was a chicken salad sandwich, of which she ate most.
Before the planned afternoon nap (which I was very much looking forward too), my mom got 10 minutes on the cross trainer machine.
It was 1:45 p.m. when we both settled for a snooze, knowing that the interruptions were not far behind. First, the nurse came in with some meds. Second, the NP came back to update us about the decision on the line. In discussion with the doctor, and given the planned blood test tomorrow to see how the Lovonox is doing, the CVL will stay in until Monday. They will hold the Lovenox on Sunday for this purpose. Starting on Monday, Lovenox would be once a day by injection for 3 months. I asked her about the doctor saying yesterday that the Lovenox would only be needed for 2 to 3 weeks. She is going to follow up on that discrepancy.
We got a little nap in now, with an interruption of the IV pole beeping at us. I think it feels neglected. It needed to be plugged in.
At 3 p.m., vitals were taken and the temperature is, once again, 38 degrees C (100.4 F). Sigh.
Just before 4 p.m., my mom looked at me and said “This is silly.” It just seems like we are waiting around a lot.
We did another 5 laps. There isn’t really anything else to do.
Just waiting
I have to comment that, in the preparation for this hospital stay, we were warned that the rooms were chilly due to the HEPA air filtration system. I must say that we have found this seldom to be the case. And, in the last few days, the room has been trending towards very warm, as the heat is pumping to keep up with the outside cold. My mom doesn’t mind it too much. The bathroom is very cold, so we find a balance of keeping the bathroom door open to keep it warmer and try to cool the room. She doesn’t want to ask for a change since the room helps keep the bathroom warm.
We are also keeping the door to the hallway open now. This was something we were prepared to not be able to do. In fact, in the other unit where we started, an alarm would go off when the door was propped open too long. It does not seem to be as much of an issue here. We have just started to prop open the door in the last two days. Anyway, tomorrow, I wear short sleeves!
While I work on this post, it’s about 5 p.m. and my mom is in the recliner reading a book on her Ipad. This is not something she has been able to do in several weeks. It’s another sign that she is certainly ready for discharge.
She did voice that today felt like a wasted day. Lots of talk, back and forth, no answers, and nothing happened. She was feeling depressed. She expressed this to the charge nurse who comes by each day to check on things, and the charge nurse was very much able to put things into perspective. She was someone who attended rounds today, understands the system, and was able to help put all the conflicting information into some order. My mom was grateful for what she had to say, and she said so.
In a better mood, we discussed dinner. She was not hungry at all, but I have a number treats in the room and have been carrying some things around just in case. We have a favorite holiday bread that I learned to make from my mom, and I brought several loaves to Buffalo. She had some in the early days but not since. I saved a loaf for her to enjoy once she had a taste for it. THAT put her in a better mood. Soup, some peanut butter crackers, holiday bread, and tea.
In the realm of things that don’t really matter, but are somewhat amusing: Remember the new Purell holder install operation from yesterday? They are turning out to be good for infection control, but since they are automatic, they have a tendency to expel Purell when ever someone gets too close. Some of the rooms are very small, and getting too close to one sets it off. I even saw someone trying to conduct rounds get “Purelled” unexpectedly.
No waiting for Purell.
We ended the day with another 5 laps, for a total of 25. My mom commented that she didn’t feel like she should feel so tired. She did a fair amount of activity today and, just as the PT said, that will tire her out.
The vitals check at 7:30 a.m. showed her temp was acceptable and she was ready to sleep.
Now, as everyone waits for the next snowstorm, we will wait out the weekend and see what happens.
-Allison
And we wait.
After an uneventful night, other than being reattached to the IV for potassium and magnesium, the 8 a.m. vitals check showed the dreaded 38 degrees (100.4 F). So, another blood culture. Getting blood from the CVL is proving to be a challenge. It took the nurse 4 tries (4th lumen) to get blood. All these cultures get taken at each fever each 24 hours. So if there are 2 fevers inside 24 hours, it’s just the one culture. The culture from January 4th is showing preliminarily to be negative, though it won’t be final until January 11. I’m told that, in general, if a culture grows fast, it is a more aggressive bacteria, and if it grows slowly it’s easier to treat.
Waiting for the cultures
Yesterday’s ESR came back high. This indicated inflammation. It seems this test is also done for unexplained fevers. Though, based on the enormous size of my mom’s right arm, this is not a surprise! In reading about ESR, I see that an abnormal reading can also be due to the multiple myeloma.
It was a pretty big storm that blew through here last night and, though it was out of downtown Buffalo by 8 a.m., it left and hung out over the south towns for the rest of the day. We noticed all new faces on the housekeeping staff who said that 12 people called out just in that department. Tough commute for lots of people. Also, the 219, the 90, the 190, the skyway, etc, were all closed as of last night. My Dad will be staying in Pennsylvania at least another day since the road between us is closed.
Waiting out the storm
While I arrived a little earlier than usual, others were a little late and I caught the daily weighing that happens and the NP coming in. She thought that the arm swelling was a little bit increased. She had the labs and was pleased that the WBC had come down after spiking for a few days. The ANC wasn’t available yet as the lab was running behind. The fever had just been detected before the NP came in, so she hadn’t heard about it yet. She thinks that my mom is eating well and confirmed Lovenox two times a day through tomorrow when they do the blood test check on the dose. There has been no diarrhea since last night.
- Swollen right arm means this sign..jpg (83.9 KiB) Viewed 552 times
Counts:
WBC: 10.18 (completely normal)
Hemoglobin: 8.9 (up from 7. 7 yesterday)
Platelets: 305
RBC: 3.01
ANC: 8.45
She said that to be discharged, my mom needs 24 hours without a fever. We also discussed the antibiotics; the current one is Augmentin (amoxicillin and clavulanate), which has a 14-day course (started on January 7), and tomorrow will start on Bactrim (sulfamethoxazole and trimethoprim), which will have a one-year course.
Waiting for the fever
The doctor appeared early today at 9:45 a.m. and said the arm and hand swelling will take a day or two to go down. He said that he was tempted to have the CVL line pulled now and go to a peripheral IV. Because of the morning Lovenox dose, this would have to wait until tomorrow morning. He felt that this would be the fastest way to see what is going on and that the Lovenox would be more effective. We also talked about the temperature spike, given that my mother was fine at night. He wondered if perhaps that was just her daily temperature variation. He took a note and dashed out of the room.
Waiting to hear about the CVL
Breakfast, eaten before all of this activity, was a bowl of Cheerios and milk and some coffee. After getting CHG’ed and changed, it was time to start the lapping. Since she was attached to the IV pole, we didn’t have quite the freedom as yesterday. But, 5 laps down.
The 10:45 a.m. vitals showed her temp way down to 36.6 C (97.7 F)! So odd.
As promised, the PT came by at 11:30 a.m. for the discharge evaluation. Normally, this would be done on discharge day, but the PT is going away for a week. It’s my guess that discharge day will be very busy, so this is just as well. She started right in with 50 step-ups! My mom handled it well, resting after 25. I was impressed, as she had not done this many in several weeks. The PT checked her heart rate and waiting to see how long it took to recover (about 2 minutes).
Then she had her sit down and checked her range of arm movement and then some strength checks on the arms and legs. Next, was balance tests: Standing with feet together, arms crossed and eyes closed. Then standing on one foot for 30 seconds and the other for 30 seconds (these were hard and only could hold a few seconds). Lastly was as many sit to stands as she could do in 30 seconds (9).
As everyone keeps saying, the PT said that discharge is planned for Monday if my mom can avoid a fever. She stressed that leaving the hospital, where food is brought to you, the bathroom is close, etc, can be very fatiguing. She said not to be surprised if my mom was more tired once out of the hospital and that this was normal. If she is very fatigued after a week, then to be sure to tell someone at her clinic appointment.
The key to the recovery now, once the fatigue passes, will be to keep moving. Walking, steps ups, sit to stands. Due to her age and the disease, she is at a higher risk for osteoporosis and osteopenia. She said that walking is the best way to prevent this – that the vibration of walking stimulates the bone growth, as does any kind of ‘pounding.’ Any kind of exercise that promotes muscle growth will also work to strengthen the bone. Exercise is key. Move as much as possible based on tolerance.
The PT left, but not before putting the Discharge Checklist in the holder on the door and signing off on her part.
- Discharge Checklist.jpg (81.44 KiB) Viewed 552 times
Waiting for the rest!
After a little recovery, 5 more laps while waiting for lunch. Lunch was a chicken salad sandwich, of which she ate most.
Before the planned afternoon nap (which I was very much looking forward too), my mom got 10 minutes on the cross trainer machine.
It was 1:45 p.m. when we both settled for a snooze, knowing that the interruptions were not far behind. First, the nurse came in with some meds. Second, the NP came back to update us about the decision on the line. In discussion with the doctor, and given the planned blood test tomorrow to see how the Lovonox is doing, the CVL will stay in until Monday. They will hold the Lovenox on Sunday for this purpose. Starting on Monday, Lovenox would be once a day by injection for 3 months. I asked her about the doctor saying yesterday that the Lovenox would only be needed for 2 to 3 weeks. She is going to follow up on that discrepancy.
We got a little nap in now, with an interruption of the IV pole beeping at us. I think it feels neglected. It needed to be plugged in.
At 3 p.m., vitals were taken and the temperature is, once again, 38 degrees C (100.4 F). Sigh.
Just before 4 p.m., my mom looked at me and said “This is silly.” It just seems like we are waiting around a lot.
We did another 5 laps. There isn’t really anything else to do.
Just waiting
I have to comment that, in the preparation for this hospital stay, we were warned that the rooms were chilly due to the HEPA air filtration system. I must say that we have found this seldom to be the case. And, in the last few days, the room has been trending towards very warm, as the heat is pumping to keep up with the outside cold. My mom doesn’t mind it too much. The bathroom is very cold, so we find a balance of keeping the bathroom door open to keep it warmer and try to cool the room. She doesn’t want to ask for a change since the room helps keep the bathroom warm.
We are also keeping the door to the hallway open now. This was something we were prepared to not be able to do. In fact, in the other unit where we started, an alarm would go off when the door was propped open too long. It does not seem to be as much of an issue here. We have just started to prop open the door in the last two days. Anyway, tomorrow, I wear short sleeves!
While I work on this post, it’s about 5 p.m. and my mom is in the recliner reading a book on her Ipad. This is not something she has been able to do in several weeks. It’s another sign that she is certainly ready for discharge.
She did voice that today felt like a wasted day. Lots of talk, back and forth, no answers, and nothing happened. She was feeling depressed. She expressed this to the charge nurse who comes by each day to check on things, and the charge nurse was very much able to put things into perspective. She was someone who attended rounds today, understands the system, and was able to help put all the conflicting information into some order. My mom was grateful for what she had to say, and she said so.
In a better mood, we discussed dinner. She was not hungry at all, but I have a number treats in the room and have been carrying some things around just in case. We have a favorite holiday bread that I learned to make from my mom, and I brought several loaves to Buffalo. She had some in the early days but not since. I saved a loaf for her to enjoy once she had a taste for it. THAT put her in a better mood. Soup, some peanut butter crackers, holiday bread, and tea.
In the realm of things that don’t really matter, but are somewhat amusing: Remember the new Purell holder install operation from yesterday? They are turning out to be good for infection control, but since they are automatic, they have a tendency to expel Purell when ever someone gets too close. Some of the rooms are very small, and getting too close to one sets it off. I even saw someone trying to conduct rounds get “Purelled” unexpectedly.
No waiting for Purell.
We ended the day with another 5 laps, for a total of 25. My mom commented that she didn’t feel like she should feel so tired. She did a fair amount of activity today and, just as the PT said, that will tire her out.
The vitals check at 7:30 a.m. showed her temp was acceptable and she was ready to sleep.
Now, as everyone waits for the next snowstorm, we will wait out the weekend and see what happens.
-Allison
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 29
A plan is made.
I am getting better at getting to the hospital early enough to catch the NP visit. I did just that this morning. My mom had a fever at the midnight vitals check and was back on the IV for potassium and magnesium. There was an overnight blood draw to test the blood for the levels of Lovenox. The results of this will take about 5 days. In the meantime, the dose of Lovenox will stay at the treatment level of 60 mg twice a day. The NP expressed that, hopefully, a day will pass without getting a fever. She said that she would send for the meds today in preparation for a Monday discharge, since we will leave with a med box full of pills. But, if there is a fever tomorrow (Sunday), that would put off the discharge another day
My mom’s biggest issue right now is the discomfort of the swollen arm. Despite the occasional fevers, she feels fine. The NP said that the Lovenox should be working soon to get the swelling down.
The NP asked if the decision was to remove the CVL tomorrow, would my mom be okay with a peripheral IV. Of course, my mom just wants what is best and is happy to do that. The NP also said that, if the fevers continue, that they may do a viral study that includes blood work and a nasal culture.
There would be discussion at rounds today of the course of action.
After the NP left, my mom dove into breakfast: Two over easy eggs, mandarin oranges, toast, and jam and tea. The RN was in the room at 9 a.m. to give the morning meds. We have had the same RN for 3 days now, and it’s always nice to have that consistency. Tomorrow, it will change, as they generally do three 13-hour shifts in a row.
Seems like a good time to update the current med list. Everything is by mouth.
- Acyclovir (1 x a day)
- Augmentin (2 x a day)
- Lovenox (2x a day)
- Gabapentin (3x a day)
- Bactrim (1 x a day on Saturday and Sunday)
- Remeron (1x a day)
- Imodium (PRN)
The potassium and magnesium are also as needed and can be given by pill once the CVL is out.
As is becoming the routine: CHG, real clothes, and then a walk. We also finally asked for the temp in the room to be lowered and noticed a difference almost immediately. It was much more comfortable.
At 10:45 a.m., the nurse popped into to tell us that the viral studies has been ordered and that she would do that with the afternoon blood draw to check for electrolytes.
I have to note that, as the morning went on, the view out the window when from blue skies and sun to being in the middle of a snow globe. The storm system that came in yesterday morning had moved to the south and hung there and was finally working its way back north.
An hour later, the doctor came in and said “will bite the bullet and take the line out tomorrow.” He said that, at this point, the Lovenox should have broken down some the clot, making getting the line out easier. He said the counts look good and confirmed the viral tests and culture. I asked about how long she would be on the Lovenox, since we have had some conflicting opinions on that. He said that the primary physician would decide, but if it’s certainty that the clot is from the line, than Lovenox might not be needed for as long.
Counts:
WBC: 10.18
Hemoglobin: 8.9
Platelets: 305
RBC: 3.01
ANC: 8.45 (finally in the ‘normal’ range)
The noon vitals had a temp to 36.7 C (98.1 F). (Hooray.)
Before lunch, we did some more laps together and then had soup and peanut butter crackers. I had brought my own and my mom, after a big breakfast, wasn’t very hungry.
The afternoon was about reading, a visit from my mom’s sister, more laps while housekeeping cleaned, the afternoon gabapentin, and a 3:30 p.m. vitals reading with a temp of 37.7 C (99.9 F). (Still fine)
Usually, when housekeeping comes, I get all of our bags off of the floor and I wait outside so that the floor can be mopped. My mom stays in bed or in the chair. This time, my aunt and I went outside and, a minute later, my mom came out too. It’s the first time she has been able to just get up and leave with us. It is little things like this that are such big signs of progress.
Just a side note: I know that there is a thread on this site about the sensitivity to dressings. My mom had a problem earlier in the week and I told you about the sensitive skin dressing and the detachol. They nurse also gave her this cream, which my mom said is really helping the sore areas from the other dressing.
At 4:00 p.m., the nurse came to draw blood for the electrolyte test (1 tube) and the virus study (6 tubes) and a nasal swab for the culture. We can all see that the swelling on my mom’s right arm is going down. Yesterday, it was tight against her sleeve, now – at the end of the day – you have to look for it.
Just at 5 p.m. my Dad came back. With the roads shut down the last two days, the plows have been out, and the roads were clear all the way back from Pennsylvania. He game back laden with Christmas cards and mail, including a package with a month worth of mail that a friend of mine had sent. It was fun to go through them. The two of them had a walk, and it wasn’t until my dad unplugged the IV pole and started to move it that he realized that he didn’t need to do that anymore!
We all had dinner together in the room, then another walk (total today of 29 laps), after which my mother got ready for bed.
The 8 p.m. vitals showed a temp of 37.0 C (98.6 F). Just a few more hours to make 24 hours clear of a fever.
I should acknowledge that, while it is clear that my mom is feeling much better, both physically and mentally, she still gets mixed up and is still losing words. Often she says things that don’t make any sense. It was even noticeable to my aunt after only a short time with her. And, of course, there is the fatigue. We all know that this goes with the territory. On the other hand, she walks without shuffling, didn’t get into the bed a single time today, is eating at each meal, and is even smiling again.
A plan is made.
I am getting better at getting to the hospital early enough to catch the NP visit. I did just that this morning. My mom had a fever at the midnight vitals check and was back on the IV for potassium and magnesium. There was an overnight blood draw to test the blood for the levels of Lovenox. The results of this will take about 5 days. In the meantime, the dose of Lovenox will stay at the treatment level of 60 mg twice a day. The NP expressed that, hopefully, a day will pass without getting a fever. She said that she would send for the meds today in preparation for a Monday discharge, since we will leave with a med box full of pills. But, if there is a fever tomorrow (Sunday), that would put off the discharge another day
My mom’s biggest issue right now is the discomfort of the swollen arm. Despite the occasional fevers, she feels fine. The NP said that the Lovenox should be working soon to get the swelling down.
The NP asked if the decision was to remove the CVL tomorrow, would my mom be okay with a peripheral IV. Of course, my mom just wants what is best and is happy to do that. The NP also said that, if the fevers continue, that they may do a viral study that includes blood work and a nasal culture.
There would be discussion at rounds today of the course of action.
After the NP left, my mom dove into breakfast: Two over easy eggs, mandarin oranges, toast, and jam and tea. The RN was in the room at 9 a.m. to give the morning meds. We have had the same RN for 3 days now, and it’s always nice to have that consistency. Tomorrow, it will change, as they generally do three 13-hour shifts in a row.
Seems like a good time to update the current med list. Everything is by mouth.
- Acyclovir (1 x a day)
- Augmentin (2 x a day)
- Lovenox (2x a day)
- Gabapentin (3x a day)
- Bactrim (1 x a day on Saturday and Sunday)
- Remeron (1x a day)
- Imodium (PRN)
The potassium and magnesium are also as needed and can be given by pill once the CVL is out.
As is becoming the routine: CHG, real clothes, and then a walk. We also finally asked for the temp in the room to be lowered and noticed a difference almost immediately. It was much more comfortable.
At 10:45 a.m., the nurse popped into to tell us that the viral studies has been ordered and that she would do that with the afternoon blood draw to check for electrolytes.
I have to note that, as the morning went on, the view out the window when from blue skies and sun to being in the middle of a snow globe. The storm system that came in yesterday morning had moved to the south and hung there and was finally working its way back north.
- Snowy Buffalo.jpg (43.76 KiB) Viewed 519 times
An hour later, the doctor came in and said “will bite the bullet and take the line out tomorrow.” He said that, at this point, the Lovenox should have broken down some the clot, making getting the line out easier. He said the counts look good and confirmed the viral tests and culture. I asked about how long she would be on the Lovenox, since we have had some conflicting opinions on that. He said that the primary physician would decide, but if it’s certainty that the clot is from the line, than Lovenox might not be needed for as long.
Counts:
WBC: 10.18
Hemoglobin: 8.9
Platelets: 305
RBC: 3.01
ANC: 8.45 (finally in the ‘normal’ range)
The noon vitals had a temp to 36.7 C (98.1 F). (Hooray.)
Before lunch, we did some more laps together and then had soup and peanut butter crackers. I had brought my own and my mom, after a big breakfast, wasn’t very hungry.
The afternoon was about reading, a visit from my mom’s sister, more laps while housekeeping cleaned, the afternoon gabapentin, and a 3:30 p.m. vitals reading with a temp of 37.7 C (99.9 F). (Still fine)
Usually, when housekeeping comes, I get all of our bags off of the floor and I wait outside so that the floor can be mopped. My mom stays in bed or in the chair. This time, my aunt and I went outside and, a minute later, my mom came out too. It’s the first time she has been able to just get up and leave with us. It is little things like this that are such big signs of progress.
Just a side note: I know that there is a thread on this site about the sensitivity to dressings. My mom had a problem earlier in the week and I told you about the sensitive skin dressing and the detachol. They nurse also gave her this cream, which my mom said is really helping the sore areas from the other dressing.
- for sensitive skin around dressings.jpg (67.93 KiB) Viewed 519 times
At 4:00 p.m., the nurse came to draw blood for the electrolyte test (1 tube) and the virus study (6 tubes) and a nasal swab for the culture. We can all see that the swelling on my mom’s right arm is going down. Yesterday, it was tight against her sleeve, now – at the end of the day – you have to look for it.
Just at 5 p.m. my Dad came back. With the roads shut down the last two days, the plows have been out, and the roads were clear all the way back from Pennsylvania. He game back laden with Christmas cards and mail, including a package with a month worth of mail that a friend of mine had sent. It was fun to go through them. The two of them had a walk, and it wasn’t until my dad unplugged the IV pole and started to move it that he realized that he didn’t need to do that anymore!
We all had dinner together in the room, then another walk (total today of 29 laps), after which my mother got ready for bed.
The 8 p.m. vitals showed a temp of 37.0 C (98.6 F). Just a few more hours to make 24 hours clear of a fever.
I should acknowledge that, while it is clear that my mom is feeling much better, both physically and mentally, she still gets mixed up and is still losing words. Often she says things that don’t make any sense. It was even noticeable to my aunt after only a short time with her. And, of course, there is the fatigue. We all know that this goes with the territory. On the other hand, she walks without shuffling, didn’t get into the bed a single time today, is eating at each meal, and is even smiling again.
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 30 (Sunday January 11, 2015)
Here we are. Day 30. The sun is out. The room is comfortable. Must be almost time to go.
Finally, the overnight temps were all within normal range. That means 24 hours without a fever since Monday night. The overnight blood work was good with just electrolytes needed. This would be the final use of the IV pole. Now the lights on it are all dark.
The 8 a.m. vitals showed a temp of 36.1 C (96.7 F). Also, they did an orthostatic blood pressure test. Those of you on Velcade know it well: BP taken while standing, while sitting and while lying down. This is part of the discharge procedure and will be repeated tomorrow.
I slept a little later than usual, so missed the morning visit of the NP. She was very pleased to see no fever overnight, the counts are good, and the plan continues to be to remove the line in the afternoon.
Counts:
WBC: 8.1
Hemoglobin: 9.4
Platelets: 35.3
RBC: 3.21
ANC: 6.54
After breakfast, my mom worked on getting the 9 a.m. pills down. The Bactrim is even bigger than the Augmentin, and it breaks down in the mouth, so you can’t try too many times. After the first try, we asked the nurse for a pill splitter, which she brought, and it made the pill much easier to swallow. I said yesterday that Bactrim was once a day on the weekends, but it turns out it is 2 times a day.
My mom was up and dressed after the pills and started the morning with a walk with my Dad while I changed the bed.
The doctor came in at 10 a.m. and, with a big gesture, said “and that is coming out today!”. Everyone is very pleased now that the fever is gone, the arm swelling is greatly reduced, and that the plan will be executed today. He was cautious about saying discharge is tomorrow, because the blood culture taken on January 9th is due back tomorrow with the preliminary findings. (Also pending is the nasal culture, the virus study, and the Lovenox blood test.)
The arm is so reduced that now we can see the bone definition on the wrist and knuckles and my mom can find her own pulse in that wrist. It had been too swollen before.
The 11:30 a.m. vitals showed a temp of 36.4 C (97.5 F) and a lower blood pressure than is normal for my mom. But she is not feeling dizzy, so they were not concerned. Five more laps, a lunch of soup, fruit, and crackers, and a thorough reading of all the newspapers that have accumulated.
I worked on some thank you notes to keep people up to date. (Add that to your list -- thank you notes to have in your room.)
The NP came back at 12:30 p.m. to remove the CVL. She had my mom lay down on the bed and gave us all masks. She removed the dressing and then cleaned the area (this stung a bit). She had my mom take a deep breath and then exhale and, on the exhale, pulled out the line. I was surprised at how long it was – about 5 inches (13 cm). She then held pressure on some gauze over where the line was while the nurse cut a piece of the line and put it into a culture cup. They will check it to make sure there was no infection. (2 days for preliminary results and 7 for final.)
She put a sensitive skin dressing right back over the area and said that it would stay until after her next shower. Then, tomorrow, a Band Aid patch would replace it for another day. Then, after the NEXT shower, it could some off. Since my mom is having trouble with the Band Aid adhesives, it is likely she will just use a 2nd sensitive skin dressing instead of the Band Aid.
This afternoon, there will be one more electrolyte check. The overnight check will be canceled. Tomorrow a lot will happen, including the delivery of all the meds around 10 a.m. in time for an 11 a.m. discharge! Out by 11 a.m.! It’s going to be busy around here. We have ordered a deli tray of wraps and cookies to be picked up tomorrow from Wegmans as a thank you to the staff on the floor. I am so glad that we get to move rooms tonight at Hope Lodge. Doing that tomorrow would have been hard.
After a bit of a nap, vitals were taken at 2:45 p.m. and her temp was good – 36.0 C (96.8 F).
My mom and my dad headed out for a walk and were interrupted by the nurse with the gabapentin. It was late today because, for some reason, it was suspended and then put back. Maybe that was because of the pulling of the CVL. The nurse didn’t know. She also drew blood to test for magnesium. Because the line is out, she had to actually use a needle! It’s been a while since my mom had to do that!
They finished some more laps and everyone settled in for some reading. Just like at home.
In an all-exciting day at Roswell, more laps and dinner (more soup – the soup here is REALLY good). We did some preliminary packing, leaving enough things behind in case discharge gets moved another day or so. There is another storm system coming tomorrow, so the more we get moved today the better.
There will be another vitals check in a little over an hour and then early to bed. Without a CVL line or IV, there are no dressing checks or beeping of finishing meds. It’s the weekend, so there is not sharps-container disposal, no volunteers with activities, and fewer staff on the floor. It’s very quiet here.
What To Pack
Since we are coming up on discharge, I thought I would put my list of things to bring to the hospital for a SCT all in one place. We got advice from other people and have built on that list. Keep in mind that my dad and I are not living at home during this process, so we looked at this from the perspective of having to bring everything and really plan ahead.
-Allison
Here we are. Day 30. The sun is out. The room is comfortable. Must be almost time to go.
Finally, the overnight temps were all within normal range. That means 24 hours without a fever since Monday night. The overnight blood work was good with just electrolytes needed. This would be the final use of the IV pole. Now the lights on it are all dark.
The 8 a.m. vitals showed a temp of 36.1 C (96.7 F). Also, they did an orthostatic blood pressure test. Those of you on Velcade know it well: BP taken while standing, while sitting and while lying down. This is part of the discharge procedure and will be repeated tomorrow.
I slept a little later than usual, so missed the morning visit of the NP. She was very pleased to see no fever overnight, the counts are good, and the plan continues to be to remove the line in the afternoon.
Counts:
WBC: 8.1
Hemoglobin: 9.4
Platelets: 35.3
RBC: 3.21
ANC: 6.54
After breakfast, my mom worked on getting the 9 a.m. pills down. The Bactrim is even bigger than the Augmentin, and it breaks down in the mouth, so you can’t try too many times. After the first try, we asked the nurse for a pill splitter, which she brought, and it made the pill much easier to swallow. I said yesterday that Bactrim was once a day on the weekends, but it turns out it is 2 times a day.
My mom was up and dressed after the pills and started the morning with a walk with my Dad while I changed the bed.
The doctor came in at 10 a.m. and, with a big gesture, said “and that is coming out today!”. Everyone is very pleased now that the fever is gone, the arm swelling is greatly reduced, and that the plan will be executed today. He was cautious about saying discharge is tomorrow, because the blood culture taken on January 9th is due back tomorrow with the preliminary findings. (Also pending is the nasal culture, the virus study, and the Lovenox blood test.)
The arm is so reduced that now we can see the bone definition on the wrist and knuckles and my mom can find her own pulse in that wrist. It had been too swollen before.
The 11:30 a.m. vitals showed a temp of 36.4 C (97.5 F) and a lower blood pressure than is normal for my mom. But she is not feeling dizzy, so they were not concerned. Five more laps, a lunch of soup, fruit, and crackers, and a thorough reading of all the newspapers that have accumulated.
I worked on some thank you notes to keep people up to date. (Add that to your list -- thank you notes to have in your room.)
The NP came back at 12:30 p.m. to remove the CVL. She had my mom lay down on the bed and gave us all masks. She removed the dressing and then cleaned the area (this stung a bit). She had my mom take a deep breath and then exhale and, on the exhale, pulled out the line. I was surprised at how long it was – about 5 inches (13 cm). She then held pressure on some gauze over where the line was while the nurse cut a piece of the line and put it into a culture cup. They will check it to make sure there was no infection. (2 days for preliminary results and 7 for final.)
She put a sensitive skin dressing right back over the area and said that it would stay until after her next shower. Then, tomorrow, a Band Aid patch would replace it for another day. Then, after the NEXT shower, it could some off. Since my mom is having trouble with the Band Aid adhesives, it is likely she will just use a 2nd sensitive skin dressing instead of the Band Aid.
- All lights are off.jpg (54.73 KiB) Viewed 477 times
This afternoon, there will be one more electrolyte check. The overnight check will be canceled. Tomorrow a lot will happen, including the delivery of all the meds around 10 a.m. in time for an 11 a.m. discharge! Out by 11 a.m.! It’s going to be busy around here. We have ordered a deli tray of wraps and cookies to be picked up tomorrow from Wegmans as a thank you to the staff on the floor. I am so glad that we get to move rooms tonight at Hope Lodge. Doing that tomorrow would have been hard.
After a bit of a nap, vitals were taken at 2:45 p.m. and her temp was good – 36.0 C (96.8 F).
My mom and my dad headed out for a walk and were interrupted by the nurse with the gabapentin. It was late today because, for some reason, it was suspended and then put back. Maybe that was because of the pulling of the CVL. The nurse didn’t know. She also drew blood to test for magnesium. Because the line is out, she had to actually use a needle! It’s been a while since my mom had to do that!
They finished some more laps and everyone settled in for some reading. Just like at home.
In an all-exciting day at Roswell, more laps and dinner (more soup – the soup here is REALLY good). We did some preliminary packing, leaving enough things behind in case discharge gets moved another day or so. There is another storm system coming tomorrow, so the more we get moved today the better.
There will be another vitals check in a little over an hour and then early to bed. Without a CVL line or IV, there are no dressing checks or beeping of finishing meds. It’s the weekend, so there is not sharps-container disposal, no volunteers with activities, and fewer staff on the floor. It’s very quiet here.
What To Pack
Since we are coming up on discharge, I thought I would put my list of things to bring to the hospital for a SCT all in one place. We got advice from other people and have built on that list. Keep in mind that my dad and I are not living at home during this process, so we looked at this from the perspective of having to bring everything and really plan ahead.
- Foam topper or memory foam
- Waterproof cover for memory foam
- Quilt or blanket to personalize and brighten the room
- Own pillow
- Several pillowcases
- Toilet paper (soft)
- Kleenex (soft)
- Extra toothbrushes (if catch a virus, will want to throw out the old one)
- Biotene (own bottle – the hospital supplies some 3 times a day but they are very hard to open. The Biotene REALLY helps the dry mouth
- Button down the front shirts (easy to get on and off with the all the lines to the IV and easy access for the nurses to get to the lumens)
- Loose pants – easy on and off
- Slippers (easy on and off)
- Thank you notes
- Pens and pencils
- Notepad (we were hear long enough for me to use two!)
- Chapstick
- Body and hand lotion (room is very dry – be aware of scent sensibilities)
- Antibacterial pump soap – At Christmas, brought in a nice holiday scene (she was never bothered by smells)
- Own shampoo and body soap (nice to have your own things – won’t need the shampoo for long)
- Small baskets – We have one on the end table next to the bed and one in the bathroom. This helps keep everything organized.
- Hats or scarves – be prepared for when the hair falls out and if your head gets cold.
- Laundry detergent
- Spray 'n Wash or Shout stain remover or something else to pre-treat stains.
- Bleach
- Packet of Clorox wipes (handy all the time)
- Plastic bags (went through a lot of these. Good for laundry. And when mom had diarrhea, good to keep some in the bathroom for clothing)
- Power strip (In the first room, we had this so that my mom could keep her iPad plugged in and not have to reach. In the second room, we plugged the IV pole into it so that it was easy for my mom to unplug at night to go to the bathroom. Getting to the wall would have been difficult)
- Decorations (drawings from kids and grandkids, Christmas lights, a calendar)
- Tape (to hang decorations if permitted)
- Hangers (Roswell has a little hanging space, but no hangars)
- Snacks, hard candies, favorite things. My mom hasn’t had much of an appetite, but now she is wanting peanut butter crackers. We had a bag of them ready. We also have some favorite packaged cookies and hard candies. If you like bags of things like chips, bring bag clips to re-close the bag.
- Napkins and plastic silverware (this has been handy for my Dad and me). Before Christmas, I always had a tin of Christmas cookies and we had holiday napkins and small holiday plates for them.
- Microwave soups. This was for my Dad and me. Very handy — ust keep them in the closet
- Bottled water or water bottle (again, for my Dad and me; it’s VERY dry).
- Closet at Roswell.jpg (45.98 KiB) Viewed 477 times
-Allison
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Leealli,
Let me say I am so happy for your mom and your family. It was tough, but you all made it through. I loved all the pictures you posted — they gave me a glimpse of my husband's future transplant. It will not be at Roswell, but I am sure a great deal of what you posted will be similar.
All my best wishes that the rest of the way is smooth sailing. Oh, and for the final picture, you should get a picture of your mom in the hospital lobby. And, if she feels up to it, a picture of her getting into the car.
Once again, congratulations to all of you.
Let me say I am so happy for your mom and your family. It was tough, but you all made it through. I loved all the pictures you posted — they gave me a glimpse of my husband's future transplant. It will not be at Roswell, but I am sure a great deal of what you posted will be similar.
All my best wishes that the rest of the way is smooth sailing. Oh, and for the final picture, you should get a picture of your mom in the hospital lobby. And, if she feels up to it, a picture of her getting into the car.
Once again, congratulations to all of you.
-
Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 31 (Monday, January 12, 2015)
December 12, 2014 was the day of my Mom’s autologous stem cell transplant at Roswell Park.
January 12, 2015 is the day my mom walked out of Roswell Park.
We started the day not really knowing for sure if this would be THE day. My dad and I were up early at the hospital by 8 a.m. with an empty suitcase and several other bags.
Even before we arrived, my mom had had her orthostatic blood pressure taken, eaten breakfast, and gotten dressed.
All the nurses and staff smiled a lot at us today and hoped with us that discharge day would go as planned.
At 8:30 a.m., the nurse came by with the morning meds and a copy of the overnight blood work.
Counts:
WBC: 7.9
Hemoglobin: 9.6
Platelets: 375
RBC: 3.31
ANC: 5.96
At 8:50 a.m., the NP came in. She reported that the counts were good, her orthostatic BP was good, she was fever free over night, and that the swollen arm was looking better. She was waiting on meds to be delivered to the hospital and for the doctor to sign off on discharge. There was still one blood culture to wait for from January 9th.
There is a pharmacy here in Buffalo that Roswell uses and they deliver all the meds to the patient’s room. My mom needs to come back tomorrow at 6:30 a.m. for lab work and a 7:00 a.m. appointment at the BMT clinic. Then she will come back a few days later for more lab work and then has an appointment with the doctor for next Monday. As the still-pending cultures come back, they will let us know how they are.
Then we had a lull. We had packed most things, but were a little afraid to really commit, just in case something went wrong. Yesterday, we were told we would be out by 11 a.m., but the NP was a little less sure of that today. My mom also did a few laps, and the nurse was able to confirm that the preliminary results of the Jan. 9 blood culture were negative.
At 9:30 a.m., a pharmacist came in with an empty med box and a med list. She went over all of them. The list shows each med, its name and generic name, dose, when to take it, and information about it. I had seen the med boxes of other patients at Hope Lodge.
She explained that, once the meds arrived, the nurse would fill the first day of meds and then tomorrow at clinic, to bring the box and ALL of the med bottles for more review.
At 9:50 a.m., the doctor came in smiling and looking very pleased. The service had changed and we had a doctor who has not seen my mom since she got the Cymbalta out of her system. This doctor has never seen her very awake or responsive. She asked if my mom had any trepidation about leaving today (no), had a look at the CVL line bandage and had a listen with her stethoscope.
They talked a bit about the Bactrim, which my mom will take for a year, and some other options if it becomes too difficult to swallow. She stressed that the Bactrim is particularly good protection against pneumonia. She confirmed that the blood thinner Lovenox would be twice a day for a week until they see the results of the Lovenox test, and then, once the dosage is adjusted, once a day for 3 months. My mom will be giving the injections to herself.
At 9:55 a.m., the social worker came in. It was the same social worker who did the intake interview. There is a different social worker for outpatients and she said to call if we needed anything.
At 10:00 a.m., the caseworker came in. Confirmed that my mom was going to Hope Lodge, that the meds have been sent for, and, with a “see you in clinic”, left. The caseworker sends all the insurance info to the pharmacy so that the prescriptions can be filled and arranges to have them delivered to the hospital. For some reason, we had received a call earlier in the morning from the pharmacy looking for my mom’s insurance info – just a little glitch in the morning.
By now, most of the boxes were full on the discharge sheet on the door. We were waiting on the dietician and the meds.
The dietician came in around 10:30 a.m. to give us an overview of the outpatient microbial diet. We have known about this from almost the beginning when we picked up a pamphlet early on when we first starting coming to Roswell. It was all new info at the time and very interesting. I think a lot of people are surprised to discover that they have to follow all these dietary rules when they leave the hospital.
The overview as reviewed by the dietician is as follows:
While all this was happening, the aides were still keeping track of ‘ins and outs’ – documenting all food and drink intake and what comes out. I told the aide that, once she was discharged, my mom was going to drink a glass of water and not tell anyone about it! My mom couldn’t wait to get to flush a toilet!
Her final vitals showed a lovely temp of 36.2 C (97.2 F) and a normal blood pressure. My mom was ready to go.
At 11:30 a.m., a man delivered her meds in a cardboard box. It included all the bottles, a sharps container for the needles, and lots of documentation. Not long after, the nurse came in to go over them. Together, he and my mom filled the box for the rest of today and for tomorrow morning.
The nurse had a pile of papers for Mom to sign, which he reviewed:
And that’s it.
My mom had her coat on faster than I could get out of my chair! The aide brought a wheel chair, and the nurse gave my mom a supply of approved masks. I was chasing the wheelchair down the hallway with the suitcase. My Dad went out to get the car. Mondays are VERY busy at Roswell, and the drop off / pick off area gets very congested. It took a little while, but my mom walked out of the hospital with the aide at her side and into the car. (I liked Melanie's suggestion of getting an exit photo, but there was too much going on to even dig out my phone to take a photo.)
It’s a short, snowy drive to Hope Lodge, where my mom had her first introduction to her new home for a week or two. After some quick introductions to the office – which gave us welcome bags full of useful things: small packet of Kleenex, toothbrushes, hand sanitizer, water bottle, PostIt notes, pen, notepad, floss, shampoo, sewing kit, chapstick – we walked through the kitchen saying hello to more people and upstairs to the room.
By now, my mom was pretty tired, but she was also hungry. I ran back downstairs to help my Dad bring things in, and then we all had lunch along with some others in the kitchen. My mom is already planning dinner and we got the crock-pot going for dinner. My mom lasted longer than I expected at lunch. She was particularly thrilled with some apples slices (washed by me for 20 seconds!). Naps for all and here I am working on this post as we start thinking about dinner.
In the evening, we had a nice dinner and were settled into bed when the night manager knocked on our door. We had a delivery from the pharmacy downstairs! It was a remaining med that had been ordered late and delivered right to Hope Lodge. I was impressed.
Time for the new normal, some new routines, and lots of waiting around until my parents can finally go home.
I have learned a lot about ‘being in the hospital’. Get a copy of the labs everyday. We have a folder that is now bulging with labs. You have to ask for this. Also, when I first arrive in the morning, I learned to track down the nurse and ask how the night was. I asked about vitals and what meds they pushed following the overnight blood work. They are happy to tell you, but it is not offered unless you ask. Once it became clear that my mom had no recollection of what happened before we arrived in morning, this was all the more important. We often missed things because, though she was told, we were not, and she had not remembered. I really disliked finding out about med and treatment changes when the new med was brought in.
Many of the nurses would pop their heads into the room and let you know as order changes appears on their computer screens. This was much appreciated. Yesterday’s nurse was not very communicative and we had a few surprises. I felt like I had to chase down information. Also, some of the nurses look in even when they don’t have meds to give or blood to draw and just check in. More often than not, my mom or my dad or I would think of a question or concern that we had.
You have to advocate for yourself and for your loved on. The nurses have access to all the tests. And can look up results. If a test is negative, you never hear about it again. But with many tests taking 7 days to come back, you don’t know what has been resolved and what has not. Keep a list of all the tests, and keep asking about the results. It’s all about collaboration between the patient, the caregivers, and the health professionals.
I will write a post tomorrow to tell you about the “day-after” clinic visit. I also want to give you the other list we have of what to do, and what not to do, for what remains of the 100 days to 6 months to a year.
Then I will check in periodically over the next week as new things happen. I will be leaving Buffalo on Wednesday to go to my parents' house to finish getting some things ready there. Also, I am traveling with a month worth of winter clothes, running clothes (never used), and a suitcase full of work clothes that need to cleaned and reorganized. I hope to head back to my own home in a few weeks.
Thanks for reading!
-Allison
December 12, 2014 was the day of my Mom’s autologous stem cell transplant at Roswell Park.
January 12, 2015 is the day my mom walked out of Roswell Park.
We started the day not really knowing for sure if this would be THE day. My dad and I were up early at the hospital by 8 a.m. with an empty suitcase and several other bags.
Even before we arrived, my mom had had her orthostatic blood pressure taken, eaten breakfast, and gotten dressed.
All the nurses and staff smiled a lot at us today and hoped with us that discharge day would go as planned.
At 8:30 a.m., the nurse came by with the morning meds and a copy of the overnight blood work.
Counts:
WBC: 7.9
Hemoglobin: 9.6
Platelets: 375
RBC: 3.31
ANC: 5.96
At 8:50 a.m., the NP came in. She reported that the counts were good, her orthostatic BP was good, she was fever free over night, and that the swollen arm was looking better. She was waiting on meds to be delivered to the hospital and for the doctor to sign off on discharge. There was still one blood culture to wait for from January 9th.
There is a pharmacy here in Buffalo that Roswell uses and they deliver all the meds to the patient’s room. My mom needs to come back tomorrow at 6:30 a.m. for lab work and a 7:00 a.m. appointment at the BMT clinic. Then she will come back a few days later for more lab work and then has an appointment with the doctor for next Monday. As the still-pending cultures come back, they will let us know how they are.
Then we had a lull. We had packed most things, but were a little afraid to really commit, just in case something went wrong. Yesterday, we were told we would be out by 11 a.m., but the NP was a little less sure of that today. My mom also did a few laps, and the nurse was able to confirm that the preliminary results of the Jan. 9 blood culture were negative.
At 9:30 a.m., a pharmacist came in with an empty med box and a med list. She went over all of them. The list shows each med, its name and generic name, dose, when to take it, and information about it. I had seen the med boxes of other patients at Hope Lodge.
She explained that, once the meds arrived, the nurse would fill the first day of meds and then tomorrow at clinic, to bring the box and ALL of the med bottles for more review.
- Week of meds.jpg (70.08 KiB) Viewed 442 times
At 9:50 a.m., the doctor came in smiling and looking very pleased. The service had changed and we had a doctor who has not seen my mom since she got the Cymbalta out of her system. This doctor has never seen her very awake or responsive. She asked if my mom had any trepidation about leaving today (no), had a look at the CVL line bandage and had a listen with her stethoscope.
They talked a bit about the Bactrim, which my mom will take for a year, and some other options if it becomes too difficult to swallow. She stressed that the Bactrim is particularly good protection against pneumonia. She confirmed that the blood thinner Lovenox would be twice a day for a week until they see the results of the Lovenox test, and then, once the dosage is adjusted, once a day for 3 months. My mom will be giving the injections to herself.
- Ready to go.jpg (83.17 KiB) Viewed 442 times
At 9:55 a.m., the social worker came in. It was the same social worker who did the intake interview. There is a different social worker for outpatients and she said to call if we needed anything.
At 10:00 a.m., the caseworker came in. Confirmed that my mom was going to Hope Lodge, that the meds have been sent for, and, with a “see you in clinic”, left. The caseworker sends all the insurance info to the pharmacy so that the prescriptions can be filled and arranges to have them delivered to the hospital. For some reason, we had received a call earlier in the morning from the pharmacy looking for my mom’s insurance info – just a little glitch in the morning.
By now, most of the boxes were full on the discharge sheet on the door. We were waiting on the dietician and the meds.
- Almost complete!.jpg (90.99 KiB) Viewed 442 times
The dietician came in around 10:30 a.m. to give us an overview of the outpatient microbial diet. We have known about this from almost the beginning when we picked up a pamphlet early on when we first starting coming to Roswell. It was all new info at the time and very interesting. I think a lot of people are surprised to discover that they have to follow all these dietary rules when they leave the hospital.
The overview as reviewed by the dietician is as follows:
- Fresh fruits and vegetable are okay IF they are washed for 20 seconds by someone else.
- No raw or frozen berries or grapes.
- No chopping
- No washing raw food or vegetables
- No items from bulk food
- No touching raw meat
- No buffets
- No fountain drinks or soft serve ice cream or frozen yogurt from machines
- No ice in drinks when out at a restaurant
- No lemon in drinks
- No soft cheese or cheeses with mold
- No sushi, oyster, etc – none of anything uncooked.
- No leftovers after 48 hours
- Wash everything – even if the package says pre-washed.
- Use well water only if boiled.
- Tap water is fine if municipally treated
- Reheat things only once then can’t have it.
- Don’t leave food out for more than 2 hours
- Nothing from the deli unless its hot at 140 degrees. Use prepackaged deli meats and cheeses
- No sharing of towels, washcloths or dishrags. Replace them every day.
- Replace sponges once a week
- Use dishwasher. Air dry all dishes.
- Check all expiration dates and toss anything that is close or over
- Outpatient low microbial diet.jpg (91.62 KiB) Viewed 442 times
While all this was happening, the aides were still keeping track of ‘ins and outs’ – documenting all food and drink intake and what comes out. I told the aide that, once she was discharged, my mom was going to drink a glass of water and not tell anyone about it! My mom couldn’t wait to get to flush a toilet!
Her final vitals showed a lovely temp of 36.2 C (97.2 F) and a normal blood pressure. My mom was ready to go.
At 11:30 a.m., a man delivered her meds in a cardboard box. It included all the bottles, a sharps container for the needles, and lots of documentation. Not long after, the nurse came in to go over them. Together, he and my mom filled the box for the rest of today and for tomorrow morning.
- Box of meds.jpg (80.63 KiB) Viewed 442 times
The nurse had a pile of papers for Mom to sign, which he reviewed:
- Tomorrow, bring all meds in the bottle and a med list. (6:30am)
- Take temperature daily (he recommended morning and night)
- Bring any at home meds to any clinic appointment
- Made sure she understood the dietary guidelines
- Avoid crowds
- Wear the approved ‘duck” mask to all hospital visits
- Daily bathing
- No driving until further notice
- No tobacco or alcohol products
- No gardening
- No live Christmas trees
- No swimming in pools or lakes
- Stay away from other sick people
- Call the clinic if have a temp of 100.5, nausea, diarrhea, headache, Bleeding, or other changes in well-being.
And that’s it.
My mom had her coat on faster than I could get out of my chair! The aide brought a wheel chair, and the nurse gave my mom a supply of approved masks. I was chasing the wheelchair down the hallway with the suitcase. My Dad went out to get the car. Mondays are VERY busy at Roswell, and the drop off / pick off area gets very congested. It took a little while, but my mom walked out of the hospital with the aide at her side and into the car. (I liked Melanie's suggestion of getting an exit photo, but there was too much going on to even dig out my phone to take a photo.)
It’s a short, snowy drive to Hope Lodge, where my mom had her first introduction to her new home for a week or two. After some quick introductions to the office – which gave us welcome bags full of useful things: small packet of Kleenex, toothbrushes, hand sanitizer, water bottle, PostIt notes, pen, notepad, floss, shampoo, sewing kit, chapstick – we walked through the kitchen saying hello to more people and upstairs to the room.
By now, my mom was pretty tired, but she was also hungry. I ran back downstairs to help my Dad bring things in, and then we all had lunch along with some others in the kitchen. My mom is already planning dinner and we got the crock-pot going for dinner. My mom lasted longer than I expected at lunch. She was particularly thrilled with some apples slices (washed by me for 20 seconds!). Naps for all and here I am working on this post as we start thinking about dinner.
In the evening, we had a nice dinner and were settled into bed when the night manager knocked on our door. We had a delivery from the pharmacy downstairs! It was a remaining med that had been ordered late and delivered right to Hope Lodge. I was impressed.
Time for the new normal, some new routines, and lots of waiting around until my parents can finally go home.
I have learned a lot about ‘being in the hospital’. Get a copy of the labs everyday. We have a folder that is now bulging with labs. You have to ask for this. Also, when I first arrive in the morning, I learned to track down the nurse and ask how the night was. I asked about vitals and what meds they pushed following the overnight blood work. They are happy to tell you, but it is not offered unless you ask. Once it became clear that my mom had no recollection of what happened before we arrived in morning, this was all the more important. We often missed things because, though she was told, we were not, and she had not remembered. I really disliked finding out about med and treatment changes when the new med was brought in.
Many of the nurses would pop their heads into the room and let you know as order changes appears on their computer screens. This was much appreciated. Yesterday’s nurse was not very communicative and we had a few surprises. I felt like I had to chase down information. Also, some of the nurses look in even when they don’t have meds to give or blood to draw and just check in. More often than not, my mom or my dad or I would think of a question or concern that we had.
You have to advocate for yourself and for your loved on. The nurses have access to all the tests. And can look up results. If a test is negative, you never hear about it again. But with many tests taking 7 days to come back, you don’t know what has been resolved and what has not. Keep a list of all the tests, and keep asking about the results. It’s all about collaboration between the patient, the caregivers, and the health professionals.
I will write a post tomorrow to tell you about the “day-after” clinic visit. I also want to give you the other list we have of what to do, and what not to do, for what remains of the 100 days to 6 months to a year.
Then I will check in periodically over the next week as new things happen. I will be leaving Buffalo on Wednesday to go to my parents' house to finish getting some things ready there. Also, I am traveling with a month worth of winter clothes, running clothes (never used), and a suitcase full of work clothes that need to cleaned and reorganized. I hope to head back to my own home in a few weeks.
Thanks for reading!
-Allison
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Hi there,
As I go down this road next month, I just want to thank you for taking the time to make these postings. You have helped me more than you know by making me aware of the daily processes and also knowing not to panic if it is not all roses during it.
Thank you,
Sharon
As I go down this road next month, I just want to thank you for taking the time to make these postings. You have helped me more than you know by making me aware of the daily processes and also knowing not to panic if it is not all roses during it.
Thank you,
Sharon
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Sharon01 - Name: Sharon
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 48
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