Just a quick note to let you all know that Ed is home!!!! I picked him up today and I'm off to the pharmacy for antibiotics. They let him come home without a PICC line and we're going to try oral antibiotics. He'll definately be taking it VERY easy this weekend........he's on orders to rest and NO DRIVING until we see the doctor on Tuesday morning back at UCLA. Wish me luck keeping him sufficiently restrained, especiallty with the summer weather! My size 6-1/2 foot doesn't feel nearly big enough to put down sometimes. I guess I'll have to dig deep into my girl scout days and try some half-hitch or monkey's fist knot tying!
Tomorrow is a birthday party for 2 of my grandsons, turning 5 and 2, so I'll be going out to Valencia. Any babysitting volunteers?????? Just kidding......I'm sure Lou or the kids will come by to visit and I'll make sure he's got a fresh stack of movies. (I'll leave a coil of rope behind his chair, just for emergencies!)
Have a great weekend!
Liz
Friday, July 29, 2011
Wednesday, July 27, 2011
5 PM Wednesday, July 27, 2011
I was hoping to have a better idea about when Ed will be coming home, but so far the doctors won't commit to anything. They did detect positive bacteria cultures in his blood and as of yesterday they were still waiting for the sub-strain tests to come back to try and narrow it down so they can treat with the appropriate antibiotic. Today they identified yet another group of bateria in his blood, so they are making changes to his medications, but his fever has been gone for about 24 hours now, so that's a good sign. His counts were down today but not all the way back at ground zero, so we're hoping he will at least be home by the weekend.
They removed his chest port on Monday afternoon when they finally got him out of ER and into a regular room. This is a routine thing when a fever develops because access lines are the most likely source for bateria to enter the body. He will likely need to have a new PICC line inserted before he goes home so we can continue with the IV antibiotics that will undoubtedly be needed, but it's not painful and he doesn't need anesthesia for it. We're really getting pretty good at this routine (unfortunately!) but at least we know what to expect and we're prepared. Ed's feeling much better today than he was over the weekend. He really didn't admit to me just how sick he was feeling until I got back in town. I stayed overnight on Monday and most of Tuesday, but today I'm getting caught up at the office and trying to unpack and get reorganized from being away. I'll be back down there tomorrow and try and get some more information and an idea about their plan for the rest of the week. Its hard to find out much on the phone -- there are so many people involved in the process and no one person seems to hold the ultimate decision on a day to day basis because of the teaching rotations, etc. Its a little frustrating, but just par for the course in that kind of environment.
Hope you are all well and I'll get back with more information as soon as I have it.
Liz
They removed his chest port on Monday afternoon when they finally got him out of ER and into a regular room. This is a routine thing when a fever develops because access lines are the most likely source for bateria to enter the body. He will likely need to have a new PICC line inserted before he goes home so we can continue with the IV antibiotics that will undoubtedly be needed, but it's not painful and he doesn't need anesthesia for it. We're really getting pretty good at this routine (unfortunately!) but at least we know what to expect and we're prepared. Ed's feeling much better today than he was over the weekend. He really didn't admit to me just how sick he was feeling until I got back in town. I stayed overnight on Monday and most of Tuesday, but today I'm getting caught up at the office and trying to unpack and get reorganized from being away. I'll be back down there tomorrow and try and get some more information and an idea about their plan for the rest of the week. Its hard to find out much on the phone -- there are so many people involved in the process and no one person seems to hold the ultimate decision on a day to day basis because of the teaching rotations, etc. Its a little frustrating, but just par for the course in that kind of environment.
Hope you are all well and I'll get back with more information as soon as I have it.
Liz
Monday, July 25, 2011
1PM Monday, July 25, 2011
Greetings from Sacramento.....on a stop over from Seattle flying into Burbank this afternoon. Sorry for the missing days of blogging. Life has been just a little complicated the past week or so from several angles and I've been attempting to manage things much like a juggler does - trying to keep all the balls in the air. Even though I seem to be given the opportunity to practice regularly, my skill level could use some work apparently....
Pressing and serious family health issues meant I needed to make a trip to Seattle as soon as was possible after Ed was stable, which seemed to be last week. I flew up late Thursday evening to spend final time with my favorite aunt Mary who is in renal failure with a short prognosis and being moved to hospice care today. My father's alzheimer's disease is progressing rapidly and he has recently been moved to a memory care ward of a facility in the Seattle suburbs and I needed to spend time with him as well. I left Ed in the capable care of Lou and the kids with him feeling fine and all the emergency information and meds laid out.
Unfortunately, Murphy clearly had other ideas for the weekend! Ed started developing a low-grade fever on Saturday and it became more difficult to manage on Sunday. The doctors at UCLA decided to order oral and IV antibiotics which we were able to coordinate via telephone and the home health nurse came to the house in the early evening to administer them. Just as they were finishing the dose, Ed began to get the rigors (uncontrollable shivering that usually signals a spiking fever) so the doctors decided he needed to be taken back to UCLA right away. Ryan and Aaron took him to UCLA ER and he remains there as of this moment because there are no beds available on the stem cell transplant unit.
I have spoken to him every few hours throughout the night and morning today and he is now feeling better and his fever is down from 103.9 to around 101. They may decide to pull out his chest port tubes again to culture them for bacteria but right now they are waiting for the blood cultures and labs to be read.
My plane arrives in Burbank around 4:30 and I will go home and pack some things and head down to UCLA immediately so I can find out what the plan of care will be and what the blood tests are showing. Infections can be very serious right now with his "baby" immune system, but I trust that they know exactly what to do for him. It's just a temporary set back and he'll get through it. When I know something more, I'll post an update to the blog.
It was a very emotional trip home to Seattle and much too short to feel at peace with my family there, but I hope to go back soon and spend more time. Obviously it has been distressing to be so far away from Ed during this situation as well. I usually stay with family or friends in Seattle and those circumstances have changed, so before my next trip, I will have to research a new place to stay, as I had a Twilight Zone type of experience at the "Hotel Satan" (as I have now come to call the place) where I stayed to be close to my family. I had never stayed there before and it seemed convenient so I took a chance. When I'm feeling more humorous, I'll detail the "you can't make this up" highlight reel of moments from the trip.
Meanwhile, I will focus on Ed's situation and get you updated as soon as possible. Must log off now and make my way to another gate for my next flight. Hope you all had a wonderful weekend.
Pressing and serious family health issues meant I needed to make a trip to Seattle as soon as was possible after Ed was stable, which seemed to be last week. I flew up late Thursday evening to spend final time with my favorite aunt Mary who is in renal failure with a short prognosis and being moved to hospice care today. My father's alzheimer's disease is progressing rapidly and he has recently been moved to a memory care ward of a facility in the Seattle suburbs and I needed to spend time with him as well. I left Ed in the capable care of Lou and the kids with him feeling fine and all the emergency information and meds laid out.
Unfortunately, Murphy clearly had other ideas for the weekend! Ed started developing a low-grade fever on Saturday and it became more difficult to manage on Sunday. The doctors at UCLA decided to order oral and IV antibiotics which we were able to coordinate via telephone and the home health nurse came to the house in the early evening to administer them. Just as they were finishing the dose, Ed began to get the rigors (uncontrollable shivering that usually signals a spiking fever) so the doctors decided he needed to be taken back to UCLA right away. Ryan and Aaron took him to UCLA ER and he remains there as of this moment because there are no beds available on the stem cell transplant unit.
I have spoken to him every few hours throughout the night and morning today and he is now feeling better and his fever is down from 103.9 to around 101. They may decide to pull out his chest port tubes again to culture them for bacteria but right now they are waiting for the blood cultures and labs to be read.
My plane arrives in Burbank around 4:30 and I will go home and pack some things and head down to UCLA immediately so I can find out what the plan of care will be and what the blood tests are showing. Infections can be very serious right now with his "baby" immune system, but I trust that they know exactly what to do for him. It's just a temporary set back and he'll get through it. When I know something more, I'll post an update to the blog.
It was a very emotional trip home to Seattle and much too short to feel at peace with my family there, but I hope to go back soon and spend more time. Obviously it has been distressing to be so far away from Ed during this situation as well. I usually stay with family or friends in Seattle and those circumstances have changed, so before my next trip, I will have to research a new place to stay, as I had a Twilight Zone type of experience at the "Hotel Satan" (as I have now come to call the place) where I stayed to be close to my family. I had never stayed there before and it seemed convenient so I took a chance. When I'm feeling more humorous, I'll detail the "you can't make this up" highlight reel of moments from the trip.
Meanwhile, I will focus on Ed's situation and get you updated as soon as possible. Must log off now and make my way to another gate for my next flight. Hope you all had a wonderful weekend.
Wednesday, July 20, 2011
9 AM Wednesday, July 20, 2011
All is well with Ed. Went to his doctor appointments on Monday afternoon and they said his labs looked fine. His overall white count is good, but neutrophil count was a little lower than they wanted, so I gave him an extra Neupogen injection when we got home. His platelets and red cells are right at the borderline of low normal, so they will just watch them to make sure they don't drop, which would require transfusing.
The home health care nurse will draw blood again on Thursday this week to see how his counts are doing and then he goes back to UCLA a week from tomorrow to check in with the doctor. So far, all is well. He has been given the okay to drive short distances and can get out a little in uncrowded places and walk in the neighborhood. Yesterday he washed his own car (?) but he gets pretty tired after just about any activity and he needs to rest as much as possible to not overdo. We'll see how long that lasts. He's really chomping at the bit to get going on SOMETHING.... and I can't blame him. I'm loosening my grip on the reins of warden because he just needs to learn to pace himself. Each day that goes by without a step backward is a day toward his goal of being back to doing the things he enjoys. We're just ticking 'em down.
He's eating better each day, even though foods don't taste normal to him yet. Probably a side effect of the chemo - most everything tastes like cardboard or has a metallic taste, but we're trying different things to see what works and everything is helping him get stronger. The doctors say the process takes many months, but we all know how quickly time seems to be going by at our age!
Thanks for staying in touch. Feel free to call Ed's cell. He'll usually answer unless he's sleeping.
Love to you all,
Liz
The home health care nurse will draw blood again on Thursday this week to see how his counts are doing and then he goes back to UCLA a week from tomorrow to check in with the doctor. So far, all is well. He has been given the okay to drive short distances and can get out a little in uncrowded places and walk in the neighborhood. Yesterday he washed his own car (?) but he gets pretty tired after just about any activity and he needs to rest as much as possible to not overdo. We'll see how long that lasts. He's really chomping at the bit to get going on SOMETHING.... and I can't blame him. I'm loosening my grip on the reins of warden because he just needs to learn to pace himself. Each day that goes by without a step backward is a day toward his goal of being back to doing the things he enjoys. We're just ticking 'em down.
He's eating better each day, even though foods don't taste normal to him yet. Probably a side effect of the chemo - most everything tastes like cardboard or has a metallic taste, but we're trying different things to see what works and everything is helping him get stronger. The doctors say the process takes many months, but we all know how quickly time seems to be going by at our age!
Thanks for staying in touch. Feel free to call Ed's cell. He'll usually answer unless he's sleeping.
Love to you all,
Liz
Monday, July 18, 2011
9 AM Monday, July 18, 2011
Another beautiful summer morning with lots of sunshine and blue sky. Ed and I got out of the house and tried to go see a movie last night - Horrible Bosses - but it was sold out when we got to the theater, so we turned around and went home. Caught the last half of 60 Minutes, watched a couple of TV movies and went to sleep by 10:30. Us boring old people ---- but it felt great. Especially after my adrenaline rush day on Saturday.
Ed has appointments this afternoon at the UCLA clinic and we'll hopefully get some answers about what the plan is for either having him stay at Tiverton House or coming back and forth to Thousand Oaks now. It's really their decision, so we'll be prepared either way by packing a light overnight bag before we leave at lunchtime. I think he's prefer to stay at home, but if he needs to be down their every day or two, the drive time is pretty tedious and time-consuming, so we'll probably opt for the Tiverton House. He's maintained his normal temperature range all weekend and hasn't felt too bad other than tired, but he sure is waiting for his appetite to come back and for food to taste normal again. Nothing he's used to eating tastes familiar - everything has a chemical or metallic taste which leaves his mouth coated with a heavy saliva that is really unpleasant. The doctors tell us it's normal and may continue that way for some months - uggh! But every day is one more forward, so we're just doing it.
He's not quite feeling like company - in person or on the phone too much, so if you call and he doesn't answer, just leave him a message - he does listen to them and appreciates hearing your voice. It may just take a few days or weeks for him to get feeling more energetic and social. Certainly to be expected.
We stopped and saw his GTO on Friday and it's GORGEOUS to say the least. The last little tweekings will be finished this week and then it will be home in our garage. I know he can't wait for that and will be anxious to get strong enough to drive it. Hopefully that will be soon. He needs something that will bring a great big smile to his face!
Have a happy Monday......
Love,
L:iz
Ed has appointments this afternoon at the UCLA clinic and we'll hopefully get some answers about what the plan is for either having him stay at Tiverton House or coming back and forth to Thousand Oaks now. It's really their decision, so we'll be prepared either way by packing a light overnight bag before we leave at lunchtime. I think he's prefer to stay at home, but if he needs to be down their every day or two, the drive time is pretty tedious and time-consuming, so we'll probably opt for the Tiverton House. He's maintained his normal temperature range all weekend and hasn't felt too bad other than tired, but he sure is waiting for his appetite to come back and for food to taste normal again. Nothing he's used to eating tastes familiar - everything has a chemical or metallic taste which leaves his mouth coated with a heavy saliva that is really unpleasant. The doctors tell us it's normal and may continue that way for some months - uggh! But every day is one more forward, so we're just doing it.
He's not quite feeling like company - in person or on the phone too much, so if you call and he doesn't answer, just leave him a message - he does listen to them and appreciates hearing your voice. It may just take a few days or weeks for him to get feeling more energetic and social. Certainly to be expected.
We stopped and saw his GTO on Friday and it's GORGEOUS to say the least. The last little tweekings will be finished this week and then it will be home in our garage. I know he can't wait for that and will be anxious to get strong enough to drive it. Hopefully that will be soon. He needs something that will bring a great big smile to his face!
Have a happy Monday......
Love,
L:iz
Sunday, July 17, 2011
Noon Sunday, July 17, 2011
What a glorious day today - the sun is shining and not too hot, the birds are singing, Ed is home dozing in his easy chair and there's just a gentle breeze outside!
Yesterday was an amazing day for sure..... my youngest daughter Lindsay turned 21. Unfortunately, Ed is still pretty housebound and taking it slow which is exactly what he needs to do so his Mom came over and stayed with him for the day. My daughter, my son Tyler and a longtime girlfriend Lenore celebrated Lindsay's 21st birthday by going skydiving! We drove up to Lompoc early in the morning and when the clouds and fog cleared, we got into a perfectly good airplace, climbed to 13,000 feet and then hurled ourselves out into the wild blue yonder! IT WAS UNBELIEVABLE AND FANTASTIC! We all LOVED it, and as soon as my feet were on the ground, I wanted to go again. It's nothing like you imagine it to be and very freeing and spiritual. We have photos and video that are just hilarious and we can't wait to go again. My son actually has been once before and yesterday did his jump from 18,000 feet, pulling his own parachute and passing the test to judge altitude and time the release, etc. He wants to get certified, but it's a long and expensive process, with a jump required at least every 30 days and 500 jumps to be completed before you can be a tandem instructor. I can absolutely see how people get hooked on this sport. You see God's country from the perspective of a bird and the quietness and serenity of the float after the parachute is open, is a crazy contrast to the noisy speed of the free fall portion when you first leave the aircraft. A symphony of experiences culminating in a powder puff landing that is no more jolting than stepping off the curb. A rush and an empowering experience to say the least! I highly recommend it! We finished her birthday by having dinner at Mastro's Steakhouse where she ordered her first cocktail - an appletini. They serve it with dry ice in it which makes for a great photo op. The wonderful piano player had the patrons sing a great Elton John rendition of Happy Birthday and we had a decadent meal of rib-eye, salmon, and lobster mashed potatoes, asparagus and ended with chocolate ganache cake and whipped cream. There were several Lamborghini's parked in the valet area, but we opted for the wheelbarrows to get us home as we were groaning and sated from our spectacular meal! It was a wonderful 21st birthday by any measure. We came home and watched our skydiving videos and laughed so hard at our funny faces!
Ed is sleeping right now but I'm going to wake him up shortly and take him for a drive out in this beautiful weather. Maybe we'll find a little stretch of beach and sit on a blanket for a bit, but I have to be careful and keep him out of the sun for more than a few minutes, as he's still quite sun sensitive from the chemo drugs. He's still feeling weak as a kitten and sleeping quite a bit, but so far his temps have been normal and he's not feeling any of the complications. No headaches or nausea. Just tired. I think he's frustrated cause he loves summer so much and wants to be doing more, but he's hanging in one day at a time. Not easy for him, but hopefully the last summer he'll have to do this treatment.
Have a wonderful Sunday afternoon and yeah......Carmageddon turned out to be another media frenzy that never materialized. Enjoy the sun.
Love,
Liz
Yesterday was an amazing day for sure..... my youngest daughter Lindsay turned 21. Unfortunately, Ed is still pretty housebound and taking it slow which is exactly what he needs to do so his Mom came over and stayed with him for the day. My daughter, my son Tyler and a longtime girlfriend Lenore celebrated Lindsay's 21st birthday by going skydiving! We drove up to Lompoc early in the morning and when the clouds and fog cleared, we got into a perfectly good airplace, climbed to 13,000 feet and then hurled ourselves out into the wild blue yonder! IT WAS UNBELIEVABLE AND FANTASTIC! We all LOVED it, and as soon as my feet were on the ground, I wanted to go again. It's nothing like you imagine it to be and very freeing and spiritual. We have photos and video that are just hilarious and we can't wait to go again. My son actually has been once before and yesterday did his jump from 18,000 feet, pulling his own parachute and passing the test to judge altitude and time the release, etc. He wants to get certified, but it's a long and expensive process, with a jump required at least every 30 days and 500 jumps to be completed before you can be a tandem instructor. I can absolutely see how people get hooked on this sport. You see God's country from the perspective of a bird and the quietness and serenity of the float after the parachute is open, is a crazy contrast to the noisy speed of the free fall portion when you first leave the aircraft. A symphony of experiences culminating in a powder puff landing that is no more jolting than stepping off the curb. A rush and an empowering experience to say the least! I highly recommend it! We finished her birthday by having dinner at Mastro's Steakhouse where she ordered her first cocktail - an appletini. They serve it with dry ice in it which makes for a great photo op. The wonderful piano player had the patrons sing a great Elton John rendition of Happy Birthday and we had a decadent meal of rib-eye, salmon, and lobster mashed potatoes, asparagus and ended with chocolate ganache cake and whipped cream. There were several Lamborghini's parked in the valet area, but we opted for the wheelbarrows to get us home as we were groaning and sated from our spectacular meal! It was a wonderful 21st birthday by any measure. We came home and watched our skydiving videos and laughed so hard at our funny faces!
Ed is sleeping right now but I'm going to wake him up shortly and take him for a drive out in this beautiful weather. Maybe we'll find a little stretch of beach and sit on a blanket for a bit, but I have to be careful and keep him out of the sun for more than a few minutes, as he's still quite sun sensitive from the chemo drugs. He's still feeling weak as a kitten and sleeping quite a bit, but so far his temps have been normal and he's not feeling any of the complications. No headaches or nausea. Just tired. I think he's frustrated cause he loves summer so much and wants to be doing more, but he's hanging in one day at a time. Not easy for him, but hopefully the last summer he'll have to do this treatment.
Have a wonderful Sunday afternoon and yeah......Carmageddon turned out to be another media frenzy that never materialized. Enjoy the sun.
Love,
Liz
Friday, July 15, 2011
9 AM Friday, July 15, 2011
It's good news Friday, in spite of the city-wide impending doom with "Carmaggedon" this weekend!
Ed is HOME.....as in Thousand Oaks, sleeping in his own bed last night! It came as quite a surprise yesterday when he called and told me the doctors had deciced to let him come home for the weekend. We had planned all along that he would be discharged to Tiverton House first. He will probably have to go back to Tiverton House next week and we'll find out for sure on Monday, but for the time being he is back in his own world and very happy about it! I think everyone was trying to work around the freeway closure and immense traffic grid-lock that they expect in the city and were trying to keep us out of that. I'm happy about that for sure.
The housekeeper is coming today to clean and sanitize the house so Ed is spending the day at his Mom's resting and watching TV. I don't want him in the middle of that dust and cleaning products etc. while the work is being done. I was caught off guard by the short notice so today was the soonest I could get someone out. He's pretty weak and just needs to lay low for a while and rest without pushing himself. Just getting dressed takes the wind out of him. (He slept for 5 hours straight when we got home yesterday.) No driving and no going anywhere for now. But at least he can sit in a chair on the patio for fresh air, etc. and he isn't cooped up in the same 4 walls. Mentally this will be very good for him. I've notified our oncologist and infection disease doctors here in Thousand Oaks that Ed is here and should something develop over the weekend that we need help with, I'll bring him to Los Robles for care. But we're just going to keep good thoughts and take the necessary precautions to make sure everything goes smoothly.
I'm working at the shop for a bit as Ida is off today babysitting her baby granddaughter, so I'll get to work now. Not sure if Ed will answer his phone today, but you can certainly leave messages.
I hope you all have a splendid and "carmaggedon - free" weekend.
Liz
Ed is HOME.....as in Thousand Oaks, sleeping in his own bed last night! It came as quite a surprise yesterday when he called and told me the doctors had deciced to let him come home for the weekend. We had planned all along that he would be discharged to Tiverton House first. He will probably have to go back to Tiverton House next week and we'll find out for sure on Monday, but for the time being he is back in his own world and very happy about it! I think everyone was trying to work around the freeway closure and immense traffic grid-lock that they expect in the city and were trying to keep us out of that. I'm happy about that for sure.
The housekeeper is coming today to clean and sanitize the house so Ed is spending the day at his Mom's resting and watching TV. I don't want him in the middle of that dust and cleaning products etc. while the work is being done. I was caught off guard by the short notice so today was the soonest I could get someone out. He's pretty weak and just needs to lay low for a while and rest without pushing himself. Just getting dressed takes the wind out of him. (He slept for 5 hours straight when we got home yesterday.) No driving and no going anywhere for now. But at least he can sit in a chair on the patio for fresh air, etc. and he isn't cooped up in the same 4 walls. Mentally this will be very good for him. I've notified our oncologist and infection disease doctors here in Thousand Oaks that Ed is here and should something develop over the weekend that we need help with, I'll bring him to Los Robles for care. But we're just going to keep good thoughts and take the necessary precautions to make sure everything goes smoothly.
I'm working at the shop for a bit as Ida is off today babysitting her baby granddaughter, so I'll get to work now. Not sure if Ed will answer his phone today, but you can certainly leave messages.
I hope you all have a splendid and "carmaggedon - free" weekend.
Liz
Wednesday, July 13, 2011
9 AM Wednesday July 13, 2011
Ed was finally moved back up to the stem cell unit around 5 PM yesterday. I drove down after work to get him re-situated in the new room and help him take a bath. After 3 days in ICU where they wouldn't even let him get up to brush his teeth, he was REALLY ready for a nice warm bath and some quiet time. ICU is nothing but interruptions, beeping machinery and endless poking and prodding. We watched a couple of shows on the Food channel (hoping it will kickstart his appetite) and I drove home around 1 AM.
They are planning to wean him off of all the meds and antibiotics today and if all goes well, he will likely be discharged to Tiverton House tomorrow afternoon. He can't WAIT to be out of that hospital. It's 3 weeks today since we checked him in and that's a long time for him to be cooped up! I know he will enjoy going for a short walk (as his energy permits) or even just sitting outside on the patio at Tiverton House. The sunshine will feel great and I'm glad the weather won't be ghastly hot for the first few days, although the weather report says triple digits by next Tuesday in the city. His counts are still low by normal standards, but are good for where he is in the stem cell recover process.
It's payroll processing this morning here at the office and I have packing and details to get organized for the stay at Tiverton House so I will sign off for now. Keep your fingers crossed for Ed's "parole hearing" tomorrow!
They are planning to wean him off of all the meds and antibiotics today and if all goes well, he will likely be discharged to Tiverton House tomorrow afternoon. He can't WAIT to be out of that hospital. It's 3 weeks today since we checked him in and that's a long time for him to be cooped up! I know he will enjoy going for a short walk (as his energy permits) or even just sitting outside on the patio at Tiverton House. The sunshine will feel great and I'm glad the weather won't be ghastly hot for the first few days, although the weather report says triple digits by next Tuesday in the city. His counts are still low by normal standards, but are good for where he is in the stem cell recover process.
It's payroll processing this morning here at the office and I have packing and details to get organized for the stay at Tiverton House so I will sign off for now. Keep your fingers crossed for Ed's "parole hearing" tomorrow!
Monday, July 11, 2011
11 PM Monday, July 11, 2011
Just got home from UCLA and want to let you know that Ed is doing okay. They have weaned him off of the blood pressure medication as of late this afternoon and everything was stable so far. If all continues to go well during the night, they will probably move him back up to the stem cell unit tomorrow. They have added an anti-fungal and another antiobiotic to his list of meds as a precaution since they still can't identify the source of the infection/fever from yesterday. He had a pretty bad headache this morning and his neck and back are a little sore from laying in one position and not being able to get up since yesterday afternoon, but the nurses are doing everything they can to make him comfortable with ice packs, warm compresses and lots of attention there in ICU. He had no appetite today, but hopefully he'll be back to eating by tomorrow.
Ed's white count was up a little today, his ANC is at .20, which is good and means the stem cells are starting to engraft, his platelets were up since the transfusion yesterday, but his red count is down, so they gave him 2 units of blood this evening while we were watching TV. They expect that to help with stabilizing his blood pressure as well. They really have everything quite well managed and down to a science, even though Ed is frustrated with all the interruptions and constant monitoring. Its not easy, especially being into this hospital stay for almost 3 weeks now, but it will all be worth it when he's on the other side and on his way to being able to do the things he loves to do. Pray for patience and strength!
Good night......
Ed's white count was up a little today, his ANC is at .20, which is good and means the stem cells are starting to engraft, his platelets were up since the transfusion yesterday, but his red count is down, so they gave him 2 units of blood this evening while we were watching TV. They expect that to help with stabilizing his blood pressure as well. They really have everything quite well managed and down to a science, even though Ed is frustrated with all the interruptions and constant monitoring. Its not easy, especially being into this hospital stay for almost 3 weeks now, but it will all be worth it when he's on the other side and on his way to being able to do the things he loves to do. Pray for patience and strength!
Good night......
11 AM Monday, July 11, 2011
Just when you think its safe to go back in the water..........
We had a very uneventful weekend in terms of news.....until late on Sunday. Ed was feeling pretty much the same and we watched some movies on Saturday, slept in late and then read the Sunday paper and hung out Sunday just watching TV. Around 4 PM Ed took a bath and by the time he got his clean PJs on and back in bed, everything started to change. He got chills and the rigors quite badly. Couldn't get warm and he was shaking so hard the nurse gave him Demerol to calm it down. Within 15 minutes the fever started and within 30 minutes his fever was 104. That's just how quickly these things can happen. But the team was on it, swarming the room and immediately responding with all the tools. By 6:30 he was resting comfortably and everything was calm. Fever was coming down, shaking was gone and he seemed to be back on track. I left to come home and get ready for work on Monday.
Because his platelet count was at 11 yesterday, they had to give him platelets because the thresshold is 10 WITHOUT a fever but its 20 WITH a fever. Around 7:30 they gave him platelets and for the first time since he's been getting blood and platelet transfusions for the past 6 months, he had a reaction to the platelets. He started getting short of breath and felt like he couldn't breathe. His fever went back up and his blood pressure dropped to 65/45 - very very low. They had given him a lot of fluids in an effort to bring it back up, but they couldn't get it where they wanted, so the doctor called me around 10 PM and explained everything that had happened and told me they needed to move him to ICU and put him on blood pressure medication, which requires monitoring every 5 minutes. Because the nursing staff to patient ratio in ICU is 1/1 that's where he needs to be until they can wean him off the BP medication - probably a day or two.
I threw on my sweats and drove back to UCLA. Because they aren't sure how long he will be in ICU, he most likely won't go back to the exact same room in the transplant unit, so I had to go and pack up all of our belongings and load the car. I visited with Ed for a couple of hours and then came home around 3 AM. The freeways are brutal at night because of the construction and it took me almost an hour and a half to get home! Yikes.
But I talked with Ed this morning twice already and I'm getting ready to head back down and visit. He says he feels ok but hasn't slept much. I can't stay overnight in ICU unless I sleep in one of the visitor waiting rooms, so I'll probably come home later this evening and I'll let you all know how he's doing. The doctors and nurses tell me not to worry.....that these situations are not uncommon with transplant patients, but staying calm is tough to do. Trying to take a deep breath with your stomach in your throat is quite a task. I find myself drawing on the breathing techniques that served me well during four natural childbirths - amazing what we remember and have to draw on when needed! Thank you Dr. Bradley!
Keep those prayers for Ed going!
Have a safe and gentle Monday. Love, Liz
We had a very uneventful weekend in terms of news.....until late on Sunday. Ed was feeling pretty much the same and we watched some movies on Saturday, slept in late and then read the Sunday paper and hung out Sunday just watching TV. Around 4 PM Ed took a bath and by the time he got his clean PJs on and back in bed, everything started to change. He got chills and the rigors quite badly. Couldn't get warm and he was shaking so hard the nurse gave him Demerol to calm it down. Within 15 minutes the fever started and within 30 minutes his fever was 104. That's just how quickly these things can happen. But the team was on it, swarming the room and immediately responding with all the tools. By 6:30 he was resting comfortably and everything was calm. Fever was coming down, shaking was gone and he seemed to be back on track. I left to come home and get ready for work on Monday.
Because his platelet count was at 11 yesterday, they had to give him platelets because the thresshold is 10 WITHOUT a fever but its 20 WITH a fever. Around 7:30 they gave him platelets and for the first time since he's been getting blood and platelet transfusions for the past 6 months, he had a reaction to the platelets. He started getting short of breath and felt like he couldn't breathe. His fever went back up and his blood pressure dropped to 65/45 - very very low. They had given him a lot of fluids in an effort to bring it back up, but they couldn't get it where they wanted, so the doctor called me around 10 PM and explained everything that had happened and told me they needed to move him to ICU and put him on blood pressure medication, which requires monitoring every 5 minutes. Because the nursing staff to patient ratio in ICU is 1/1 that's where he needs to be until they can wean him off the BP medication - probably a day or two.
I threw on my sweats and drove back to UCLA. Because they aren't sure how long he will be in ICU, he most likely won't go back to the exact same room in the transplant unit, so I had to go and pack up all of our belongings and load the car. I visited with Ed for a couple of hours and then came home around 3 AM. The freeways are brutal at night because of the construction and it took me almost an hour and a half to get home! Yikes.
But I talked with Ed this morning twice already and I'm getting ready to head back down and visit. He says he feels ok but hasn't slept much. I can't stay overnight in ICU unless I sleep in one of the visitor waiting rooms, so I'll probably come home later this evening and I'll let you all know how he's doing. The doctors and nurses tell me not to worry.....that these situations are not uncommon with transplant patients, but staying calm is tough to do. Trying to take a deep breath with your stomach in your throat is quite a task. I find myself drawing on the breathing techniques that served me well during four natural childbirths - amazing what we remember and have to draw on when needed! Thank you Dr. Bradley!
Keep those prayers for Ed going!
Have a safe and gentle Monday. Love, Liz
Friday, July 8, 2011
3 PM Friday, July 8, 2011
WOW! Ed has another week of "doing his time" as he calls it, under his belt. So far, so good......knock on wood. His appetite was actually a little better and he ate breakfast this morning. He slept pretty well last night and told the doctor he's really, really, REALLY ready to go home. So far his ANC (absolute neutrophil count) is still at 0, but that's expected. It has to be at point 5 for 2 days in a row before he can go home, but the doctor said that could happen by early next week. We will still undoubetedly have to go to Tiverton House for a bit, but since we can't really plan anything for certain yet, we're still just taking it one day at a time.
So thankfully, there isn't much to report again, but we'll take it!
Ed is catching up on lots of Ice Road Truckers and Pawn Stars. He got so tired of the Casey Anthony media coverage that he had to turn off the news! Thank goodness......all that yelling and agruing is exhausting.
Have a wonderful weekend.
Liz
So thankfully, there isn't much to report again, but we'll take it!
Ed is catching up on lots of Ice Road Truckers and Pawn Stars. He got so tired of the Casey Anthony media coverage that he had to turn off the news! Thank goodness......all that yelling and agruing is exhausting.
Have a wonderful weekend.
Liz
Wednesday, July 6, 2011
7 AM Wednesday, July 6th, 2011
Just a quick note of update.....Ed is still doing okay....actually, yesterday the doctor who saw him was surprised and pleased that his symptoms have been relatively moderate, compared to a lot of the patients who undergo this procedure. He's not particularly comfortable, but his tenacity and determination are definately working in his favor. One of the other patients who had a stem cell transplant a few days before Ed was moved to ICU yesterday for uncontollable bleeding related to her platelet counts, so we know that some people do suffer with some pretty serious complications. Obviously because of confidentiality rules, the nurses and doctors won't talk in specifics about other patients, but they do say that Ed is doing quite well under the circumstances. So far, so good it seems and we're grateful for that. No new mouth sores or issues to report, but his appetite is really getting sparse and it's getting harder to find anything that he will eat, but his weight is still at 147, so the doctor is okay with him just getting fluids and a few bites of canned pears or peaches, which is all he wants right now.
Last night was a rough night for sleep - the maintenance staff was doing something in the room next door and banging stuff against the wall and moving furniture repeatedly during the night. Very annoying to say the least, but Ed will catch up on his rest today and the staff promised that the work is done in that room for now. (Maybe they were just pounding out their frustrations about the Casey Anthony verdict !) I finally got up at 4:45 this morning after tossing and turning all night and drove home to shower and be in the office by 7. Will try and take a nap this afternoon before I go back down to the hospital.
Keep good thoughts and be well ........Liz
Last night was a rough night for sleep - the maintenance staff was doing something in the room next door and banging stuff against the wall and moving furniture repeatedly during the night. Very annoying to say the least, but Ed will catch up on his rest today and the staff promised that the work is done in that room for now. (Maybe they were just pounding out their frustrations about the Casey Anthony verdict !) I finally got up at 4:45 this morning after tossing and turning all night and drove home to shower and be in the office by 7. Will try and take a nap this afternoon before I go back down to the hospital.
Keep good thoughts and be well ........Liz
Tuesday, July 5, 2011
11 PM Monday, July 4th, 2011
Happy 4th....hope you all had a spectacular day filled with family, fun and fireworks!
Unfortunately, Ed is starting to feel the effects of the chemo and the transplant somewhat more....he's beginning to develop the mucositis which is so common wih this treatment.....it consists mostly of mouth sores but can spread to the esophagus and digestive system as well, which we hope won't happen. His counts have dropped way down so he had a platelet infusion today and the staff is doing everything to make him as comfortable as possible. He's trying to sleep as much as possible and just "lay low" and get through the day. He's still able to eat, which is good, even though he really doesn't have much of an appetite.
Long days ahead, but we're grateful for each one that passes by relatively uneventfully and quickly. Its the best we can hope for. Once the stem cells engraft he'll be on his way to healing and getting better. It just takes time.
Thanks for the cards, messages and prayers. They are a constant source of strength and encourgement.
I'll be back tomorrow with an update.
Unfortunately, Ed is starting to feel the effects of the chemo and the transplant somewhat more....he's beginning to develop the mucositis which is so common wih this treatment.....it consists mostly of mouth sores but can spread to the esophagus and digestive system as well, which we hope won't happen. His counts have dropped way down so he had a platelet infusion today and the staff is doing everything to make him as comfortable as possible. He's trying to sleep as much as possible and just "lay low" and get through the day. He's still able to eat, which is good, even though he really doesn't have much of an appetite.
Long days ahead, but we're grateful for each one that passes by relatively uneventfully and quickly. Its the best we can hope for. Once the stem cells engraft he'll be on his way to healing and getting better. It just takes time.
Thanks for the cards, messages and prayers. They are a constant source of strength and encourgement.
I'll be back tomorrow with an update.
Sunday, July 3, 2011
8 AM Sunday, July 2, 2011
After a long day yesterday, I fell asleep without updating the blog, so I am making sure to get to it first thing today. Ed is still feeling about the same -- just on the edge of crummy with no appetite, not much energy and super bored and wanting to go home. So far, he's experiencing manageable nausea, but no diarrhea, no mouth sores and just a couple of skin lesions. The nurses say he's doing well. We don't have his blood counts for today yet, but they've started the Neupogen shots to help control the dropping numbers as much as possible.
Ed added some excitement to the equation yesterday by falling in the bathroom at about 4;30 AM Saturday morning. He's okay, but it created a bit of hub-bub for the staff of course. It happened before I got here yesterday so I didn't witness it, but he remembers getting up to use the bathroom after the early morning blood draw. He was sleepy and NOT wearing the hospital-issue socks with the rubber skid-proof tracks on the bottom. He had put on a pair of his own socks from home. When he leaned forward to flush the toilet, he lost his balance and fell between the toilet and the sink, hitting his arm and side of his head. His right ear looks like Mike Tyson took a bite out of it, he's got a goose-egg above that ear (really more like a quail egg size thankfully), and he's got a pretty good-sized area of his right forearm that has the skin scraped off. Luckily, his platelet count is still okay, although its dropping too, so they want to get these injuries healed quickly to minimize the bleeding and infection risks. They immediately took him down for a head CT and everything looks fine there - no concussion or brain bleed. He's been read the riot act by the doctors and nurses about the sock issue and using the bedside urinal during the night instead of wandering to the bathroom in the dark when he's sleepy. After a fall, the staff is required to monitor him more closely and check his vital signs every 2 hours, so we didn't get much sleep last night. Hopefully he'll be comfortable enough to catch up on some rest today and then be back on schedule for fewer interruptions tonight.
The nurse practioner just came in and said the final results from the CT scan came in. Without thinking through the long-term implications of making such a declaration, she announced to Ed that "you have a perfect brain". I immediately concluded that she must not be married or that the radiology tech accidentally scanned the lower half of his body.......in any event, we all had a good laugh at her gaff. By the time she finished examing Ed and tried to leave, she could barely squeeze out the door - his ego was blocking it!! She has no idea about the magnitude of havoc she has just created. Forewarned is forearmed. None of us can EVER AGAIN expect to engage Ed in opposing viewpoints and come out victorious. By the time we leave here he'll probably have a "perfect brain" certificate (suitable for framing), and one in his wallet for on-the-go moments! Even with all the meds he's on, I have a hunch he won't forget this and years from now, he'll refer to this moment as having been worth the whole ordeal!
Well, I'm going to run out and get coffee and the Sunday paper. Mr Perfect Brain has just dozed off, but remains smiling.......
Happy Sunday!
Ed added some excitement to the equation yesterday by falling in the bathroom at about 4;30 AM Saturday morning. He's okay, but it created a bit of hub-bub for the staff of course. It happened before I got here yesterday so I didn't witness it, but he remembers getting up to use the bathroom after the early morning blood draw. He was sleepy and NOT wearing the hospital-issue socks with the rubber skid-proof tracks on the bottom. He had put on a pair of his own socks from home. When he leaned forward to flush the toilet, he lost his balance and fell between the toilet and the sink, hitting his arm and side of his head. His right ear looks like Mike Tyson took a bite out of it, he's got a goose-egg above that ear (really more like a quail egg size thankfully), and he's got a pretty good-sized area of his right forearm that has the skin scraped off. Luckily, his platelet count is still okay, although its dropping too, so they want to get these injuries healed quickly to minimize the bleeding and infection risks. They immediately took him down for a head CT and everything looks fine there - no concussion or brain bleed. He's been read the riot act by the doctors and nurses about the sock issue and using the bedside urinal during the night instead of wandering to the bathroom in the dark when he's sleepy. After a fall, the staff is required to monitor him more closely and check his vital signs every 2 hours, so we didn't get much sleep last night. Hopefully he'll be comfortable enough to catch up on some rest today and then be back on schedule for fewer interruptions tonight.
The nurse practioner just came in and said the final results from the CT scan came in. Without thinking through the long-term implications of making such a declaration, she announced to Ed that "you have a perfect brain". I immediately concluded that she must not be married or that the radiology tech accidentally scanned the lower half of his body.......in any event, we all had a good laugh at her gaff. By the time she finished examing Ed and tried to leave, she could barely squeeze out the door - his ego was blocking it!! She has no idea about the magnitude of havoc she has just created. Forewarned is forearmed. None of us can EVER AGAIN expect to engage Ed in opposing viewpoints and come out victorious. By the time we leave here he'll probably have a "perfect brain" certificate (suitable for framing), and one in his wallet for on-the-go moments! Even with all the meds he's on, I have a hunch he won't forget this and years from now, he'll refer to this moment as having been worth the whole ordeal!
Well, I'm going to run out and get coffee and the Sunday paper. Mr Perfect Brain has just dozed off, but remains smiling.......
Happy Sunday!
Friday, July 1, 2011
5 PM Friday, July 1, 2011
Sometimes no news is good news......and this is one of those days. Ed had a pretty quiet night last night and spent a good part of today resting and sleeping. His counts have dropped a bit more since yesterday and he's feeling pretty lethargic and sleepy with some mild nausea startng late this afternoon. (Sorry, didn't intend that to sound like a weather report, but I guess it does - kind of like "Cloudy With a Chance of Meatballs.) He had one mild episode of vomiting this afternoon but when I talked to him a few minutes ago he was feeling better and planning his daily rendevous with Bill O'Reilly. That seems to be a good barometer of how he's doing --- if he misses "The Factor", you know he's having a hard time. I've been working at the office all day (month end) but will leave to go back to UCLA when the 4th of July "get-outta-town" traffic eases up later this evening.
Ed did have the last bag of stem cells infused today, without the fanfare of cake and singing, but stem cells none the less. So he is officially finished with his cancer treatments. It has been a tough journey for him for sure and I hope the coming months are easier now that he won't have chemotherapy with which to content. Now we just wait.....and wait......and wait, which is also hard for Ed, but he's really working on his zen-master self. I gave him some yoga class gift certificates late last year, and soon he might actually look forward to using them!
I'll be back tomorrow to let you know how he's doing. Meanwhile, enjoy the holiday weekend, have a cold beer for Ed, and most of all, be safe!
Liz
Ed did have the last bag of stem cells infused today, without the fanfare of cake and singing, but stem cells none the less. So he is officially finished with his cancer treatments. It has been a tough journey for him for sure and I hope the coming months are easier now that he won't have chemotherapy with which to content. Now we just wait.....and wait......and wait, which is also hard for Ed, but he's really working on his zen-master self. I gave him some yoga class gift certificates late last year, and soon he might actually look forward to using them!
I'll be back tomorrow to let you know how he's doing. Meanwhile, enjoy the holiday weekend, have a cold beer for Ed, and most of all, be safe!
Liz
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