Hello everyone,
The fentanyl pca is working well to handle Jeff's pain. It makes him drowsy though, so he is considering asking them to turn down the amount some. The dr was in and said main goal at this time is to protect Jeff's organs and organ systems so they don't shut down. He has quite a bit of ankle swelling. They have decreased his iv fluids. Everything except immodium is iv. Also, his platelets have been so low that the order is to transfuse platelets to him every 12 hours for 48-72 hours. One other item. His bowels continue to flow at a rapid pace, so they are starting to give him tincture of opium every day. He hasn't had his first dose yet. It is a heavy duty thing drug that pharmacy makes to slow down the motility of his digestive system, so he maybe can absorb some of the nutrients that he is taking in and not flushing them immediately through the gut. Mouth sores still very sore!!!
Platelets--8 Red blood cells---27.2 WBC---0.1 ANC---0
Wahoo for Mimi and Todd and baby Paxton born at 4:11 am this morning our time. He is in the
nursery as he isn't pumping the blood to his extremities well. Hope to hear from them later today for what the pediatrician's plan is.
Tuesday, April 7, 2009
Monday, April 6, 2009
Day 4
New hospital doctor for the week is Dr. Brunsbaugh. He came in to see Jeff this morning and was going to change some things for him. The biggest thing that has started is that they have Jeff on a PCA which is--patient controlled analgesia. He is receiving fentanyl. It is mostly for his mouth sores. He has a constant amount that goes in over each hour and then he has what is called a demand amount that he can push when he has either extra pain or to help him when he is eating. Maintenance iv fluids continue. He received platelets last night and other electrolyte replacements. The interesting thing the dr said was quite possibly some of the diarrhea could be due to the destruction of the cancer in the abdomen and the abdomen now trying to deal with empty spots--a new landscape. He encouraged Jeff to keep eating and keep taking as much immodium as he needs to each day to try to stop it. He can take 8 pills per day. His last diarrhea was at 0830 this morning which is great. It is about 1:15 now. He only has 4 more pills that he can take today. The other big thing today was that Jeff got to leave the floor to go down for a chest xray. Each Monday, they standardly do one. He hasn't left the floor in 12 days, so that was good for him. He had to be gowned, gloved, and have a mask on as well. We walked for 10 min this am. He is feeling weak and tired, but a good attitude the majority of the time. Our thoughts have been about Michelle today as well. --a lot. Two people in the hospital at once is a lot...
The hope is that both will have a glorious outcome. We'll keep in touch.
Oops, here are his counts today:
Platelets--4 ANC-134 red blood cells- 26.2
The hope is that both will have a glorious outcome. We'll keep in touch.
Oops, here are his counts today:
Platelets--4 ANC-134 red blood cells- 26.2
Sunday, April 5, 2009
Day 3
I was waiting for my secretary Deanne to arrive and dictate this to her but she and Monica can not come today since Monica is sick. Since I have no white cells it is dangerous to be exposed to someone sick. Deanne has been around her so she is protecting me also.
I had a good night last night. I am now taking Imodium for the diarrhea. It really helped last night and I finally got a decent sleep. A new problem started. I have some small mouth sores from the chemo. They are pretty insignificant but one seems to be near where I swallow food so it is making eating difficult. I am eating soft food and liquids.
Blood counts: Platelets 3, white blood cells 180, red blood cells 21.9. These counts entitled me to 2 units of blood and one of platelets. One interesting thing is that they give me o- blood now since I will transition from a- to b+ during this process. O- is the universal donor. I saw the doctor this morning and he said that I am doing great. Of course I do not feel like I am doing great. He says how you are feeling and how you are doing are different in this case. Small consolation as I sit on the toilet with a sore rear and can't swallow.
Today has been pretty good. Some diarrhea action this morning controlled by Imodium. Nanette & I watched the afternoon General Conference on the lap top. Walking in the hall for 10 minutes about wore him out. Jeff is up around in the bedroom for a little bit, then he sleeps for 15-30 min. I told him that is what I tell my patients to do. ..Be busy, then rest. His attitude is pretty good. He got a dose of methotrexate this afternoon and is still on antibiotics. Doing laundry is a daily occurrence around here. No worries though as it is just down the hall. It is shower time now and then he is going to try iv pain meds--fentanyl--to help him eat some dinner without pain. He is nervous about doing that, but the nurse and I convinced him that to eat and not have pain is better than worrying about falling. I will be in the room the whole time to monitor him and make sure he doesn't fall. That's all for now. Sionara Love to you!!!
I had a good night last night. I am now taking Imodium for the diarrhea. It really helped last night and I finally got a decent sleep. A new problem started. I have some small mouth sores from the chemo. They are pretty insignificant but one seems to be near where I swallow food so it is making eating difficult. I am eating soft food and liquids.
Blood counts: Platelets 3, white blood cells 180, red blood cells 21.9. These counts entitled me to 2 units of blood and one of platelets. One interesting thing is that they give me o- blood now since I will transition from a- to b+ during this process. O- is the universal donor. I saw the doctor this morning and he said that I am doing great. Of course I do not feel like I am doing great. He says how you are feeling and how you are doing are different in this case. Small consolation as I sit on the toilet with a sore rear and can't swallow.
Today has been pretty good. Some diarrhea action this morning controlled by Imodium. Nanette & I watched the afternoon General Conference on the lap top. Walking in the hall for 10 minutes about wore him out. Jeff is up around in the bedroom for a little bit, then he sleeps for 15-30 min. I told him that is what I tell my patients to do. ..Be busy, then rest. His attitude is pretty good. He got a dose of methotrexate this afternoon and is still on antibiotics. Doing laundry is a daily occurrence around here. No worries though as it is just down the hall. It is shower time now and then he is going to try iv pain meds--fentanyl--to help him eat some dinner without pain. He is nervous about doing that, but the nurse and I convinced him that to eat and not have pain is better than worrying about falling. I will be in the room the whole time to monitor him and make sure he doesn't fall. That's all for now. Sionara Love to you!!!
Saturday, April 4, 2009
Day 2
This is Deanne writing for dad.
It was another tough night with lots of diarrhea and now mouth sores...I noticed mouth sores about bed time and the nurse checked them out, gave me some miracle "warsh" (wash) to help out with them. The doctor could not see them this morning so I think the wash helped out. I got platelets, potassium, and magnesium during the night.
We were supposed to have a big snow storm last night and it didn't materialize, just got a spitting of snow. Nanette is staying home and taking the day off. Deanne is here right now helping out and Monica will be here later in the afternoon after the big switch off of the kiddos! Saw the doctor and nurse practitioner this morning and asked them for Immodium to stop the diarrhea. They finally consented to that, and the diarrhea is seeming to slow down (which is a good thing). The doctor said that this will pass, he thinks the reason for the diarrhea and mouth sores is because of the high dose of chemo.
Ok, now it's Deanne. I went and tried to start the laundry but someone has a crap load of clothes to do so I haven't been able to get to it yet. He has been lying in bed most of the time I've been here, besides getting up to go to the bathroom and eat a small bit of food. His eating consists of a small portion of food at a time, i.e. he ate a 1/2 of an english muffin and a pop...slow eating so he does not overwhelm his stomach. Mom called to "check in" a little bit ago. I rode his exercise bike for 7 minutes or so, but this gown and gloves gets you so hot that I had to stop...I didn't want to be sweating when I took a shower this morning... :-) The retry time for laundry is 11:30 and I will be refilling ice, pop, and getting myself something to eat too. The food room is pretty cool here because there is a variety of food and drinks that we're allowed to eat...funny story, the first time Monica and I were here and mom and dad told us to go get food and drinks. We were scared to go in there b/c we thought we'd get in trouble, and we got caught by a nurse!! So the next day I told them no way no how I will not go in there b/c we're gonna get in trouble...there was a nurse in the room and she said that they were the only ones that get in trouble if they eat the food! Phew! That would have stunk getting kicked out of the hospital!!
Blood counts: platelets 8, white blood cells 270, red blood cells 27.1
It was surprising that the white blood counts went up. I asked the doctor about it and he said not to take it as a positive sign yet, there's a good chance that it will still hit zero before the stem cells start working.
It was another tough night with lots of diarrhea and now mouth sores...I noticed mouth sores about bed time and the nurse checked them out, gave me some miracle "warsh" (wash) to help out with them. The doctor could not see them this morning so I think the wash helped out. I got platelets, potassium, and magnesium during the night.
We were supposed to have a big snow storm last night and it didn't materialize, just got a spitting of snow. Nanette is staying home and taking the day off. Deanne is here right now helping out and Monica will be here later in the afternoon after the big switch off of the kiddos! Saw the doctor and nurse practitioner this morning and asked them for Immodium to stop the diarrhea. They finally consented to that, and the diarrhea is seeming to slow down (which is a good thing). The doctor said that this will pass, he thinks the reason for the diarrhea and mouth sores is because of the high dose of chemo.
Ok, now it's Deanne. I went and tried to start the laundry but someone has a crap load of clothes to do so I haven't been able to get to it yet. He has been lying in bed most of the time I've been here, besides getting up to go to the bathroom and eat a small bit of food. His eating consists of a small portion of food at a time, i.e. he ate a 1/2 of an english muffin and a pop...slow eating so he does not overwhelm his stomach. Mom called to "check in" a little bit ago. I rode his exercise bike for 7 minutes or so, but this gown and gloves gets you so hot that I had to stop...I didn't want to be sweating when I took a shower this morning... :-) The retry time for laundry is 11:30 and I will be refilling ice, pop, and getting myself something to eat too. The food room is pretty cool here because there is a variety of food and drinks that we're allowed to eat...funny story, the first time Monica and I were here and mom and dad told us to go get food and drinks. We were scared to go in there b/c we thought we'd get in trouble, and we got caught by a nurse!! So the next day I told them no way no how I will not go in there b/c we're gonna get in trouble...there was a nurse in the room and she said that they were the only ones that get in trouble if they eat the food! Phew! That would have stunk getting kicked out of the hospital!!
Blood counts: platelets 8, white blood cells 270, red blood cells 27.1
It was surprising that the white blood counts went up. I asked the doctor about it and he said not to take it as a positive sign yet, there's a good chance that it will still hit zero before the stem cells start working.
Friday, April 3, 2009
Day 1
Well I made it through another night. The first half was good then the 2nd half bad. I was able to sleep the first half and my urinary tract problem seemed to be fixed. The second half of the night I got diarrhea again. Now I couldn't sleep and was getting up from the bed every 15 minutes. I trying to increase my fluids and eat a bland diet to get this under control. I may not be able to, it may take until my white blood cells start to come back.
Blood counts: platelets 11, white blood cells 160 , red blood cells 28.7
They are saying we are in a watch and see game right now. If all goes well my white cells should decrease to zero then start building up when the new bone marrow en graphs and starts working properly. 160 is quite low so I am open to infection. They are giving me 2 antibiotics just as a precaution.
I walked for 15 minutes this morning. I will try and do more later. It is tiring just typing this blog. That's the fatigue from the white blood cells being so low.
Nanette and I figured my rebirth was at 11:17AM 2 April. That is when the last bone marrow stem cell entered my body. Now we just have to get the 6 million little buggers to start working without my body rejecting them.
Jeff walked twice today for about 15 min at at time. He is still battling diarrhea a lot which makes it difficult for him to want to eat. I am forcing him to get something in every hour--popsicles, applesauce, crackers, juice...I am suggesting to him to have mashed potatoes, english muffin, bagels...He isn't really excited about anything. He is losing weight, but is still being willing to be henpecked about eating. He just got some zofran--antinausea meds--to help settle his stomach.
There is supposed to be a really big snowstorm tonight; both Deanne and Monica are planning to spell me tomorrow. They want the chance to serve their dad and to be with him. Using hospital bottoms is working better at this time rather than Jeff's own clothes. I have been running a load or two daily. There is a washing machine and dryer here for patients and families to use with very strict instructions on cleaning following each load of laundry. Clorox bleach needs to be run with water only following a load of patients clothing along with bleach wipes on the tops of both the washer and dryer. While in Jeff's room, any visitors need to be gowned and gloved following a vigorous handwashing at two different stations. It was pretty interesting wearing a gown and gloves to bed over my pajamas two nights ago. This is it for us today.
Blood counts: platelets 11, white blood cells 160 , red blood cells 28.7
They are saying we are in a watch and see game right now. If all goes well my white cells should decrease to zero then start building up when the new bone marrow en graphs and starts working properly. 160 is quite low so I am open to infection. They are giving me 2 antibiotics just as a precaution.
I walked for 15 minutes this morning. I will try and do more later. It is tiring just typing this blog. That's the fatigue from the white blood cells being so low.
Nanette and I figured my rebirth was at 11:17AM 2 April. That is when the last bone marrow stem cell entered my body. Now we just have to get the 6 million little buggers to start working without my body rejecting them.
Jeff walked twice today for about 15 min at at time. He is still battling diarrhea a lot which makes it difficult for him to want to eat. I am forcing him to get something in every hour--popsicles, applesauce, crackers, juice...I am suggesting to him to have mashed potatoes, english muffin, bagels...He isn't really excited about anything. He is losing weight, but is still being willing to be henpecked about eating. He just got some zofran--antinausea meds--to help settle his stomach.
There is supposed to be a really big snowstorm tonight; both Deanne and Monica are planning to spell me tomorrow. They want the chance to serve their dad and to be with him. Using hospital bottoms is working better at this time rather than Jeff's own clothes. I have been running a load or two daily. There is a washing machine and dryer here for patients and families to use with very strict instructions on cleaning following each load of laundry. Clorox bleach needs to be run with water only following a load of patients clothing along with bleach wipes on the tops of both the washer and dryer. While in Jeff's room, any visitors need to be gowned and gloved following a vigorous handwashing at two different stations. It was pretty interesting wearing a gown and gloves to bed over my pajamas two nights ago. This is it for us today.
Thursday, April 2, 2009
Day 0
Day 0:
It is 1042 am and Jeff is getting his cells now!!! They premedicated him with benadryl, ativan, tylenol, solucortef prior to the transplant. We both have been a little emotional this morning prior to the cells being given. The doctor started them dripping at 1005. Jeff was up for good at 0645 and has just been in the waiting mode until the doctor and nurse came in for the giving of the cells. He is getting one bag of cells---but there are 6 million of them! They collected 12 million from the donor. There were only 3 million needed--per the nurse this am. The lady who was here last night to receive the cells and check them told me that they were "beautiful cells." She also said the courier had a message from the donor. "My prayers are with you and I hope this gives you a new chance at life." Of course I cried. Jeff just said we will officially count it as his birth when the last cells go in. Want to make a bet on the time? Thank you--all of you--for your prayers and kind thoughts. We know without a shadow of a doubt that they are heard by God!!
Blood counts
Platelets 12 Rbc's 29.8 WBC .3
It is 1042 am and Jeff is getting his cells now!!! They premedicated him with benadryl, ativan, tylenol, solucortef prior to the transplant. We both have been a little emotional this morning prior to the cells being given. The doctor started them dripping at 1005. Jeff was up for good at 0645 and has just been in the waiting mode until the doctor and nurse came in for the giving of the cells. He is getting one bag of cells---but there are 6 million of them! They collected 12 million from the donor. There were only 3 million needed--per the nurse this am. The lady who was here last night to receive the cells and check them told me that they were "beautiful cells." She also said the courier had a message from the donor. "My prayers are with you and I hope this gives you a new chance at life." Of course I cried. Jeff just said we will officially count it as his birth when the last cells go in. Want to make a bet on the time? Thank you--all of you--for your prayers and kind thoughts. We know without a shadow of a doubt that they are heard by God!!
Blood counts
Platelets 12 Rbc's 29.8 WBC .3
Wednesday, April 1, 2009
day -1/2
Last night was much better. They gave me the ATG (rabbit stuff) and I did not react at all. No temperature or anything. I got decent sleep during the night. To help out they ran the ATG into me at a slower rate and changed the timing of the premeds. Anyway it worked. I did get platelets during the night as my platelets dropped below 10.
Blood counts. Platelets=9 White blood cells=.4 Red blood cells=28.6
I am officially neutropenic today so they are going to start some antibiotics just in case since I am more prone to infection. My stem cells (bone marrow) are supposed to arive sometime tonight. Dr Bearman said they will infuse them tomorrow morning because the shelf life is 48 hours. So it looks like my new birthday will be 2 April.
Nanette will arrive about 1PM today. I walked this morning and will go out for 20 more minutes now. A hospital chaplain and dietician paid me a visit today along with the nurses, doctor & nurse practioner. Never a dull moment.
The day went downhill from there. Diarrhea, temperature of 102 and urinary frequency started and continued throughout the night. They took urine and stool samples and started Jeff on both intravenous antibiotics--cefepime as well as oral levaquin. I stayed overnight with him. He was up every 10-20 minutes to the bathroom. I have run 2 loads of wash since last night. His appetite isn't good at this point. He is doing the brat diet at this time. So long for now.
Blood counts. Platelets=9 White blood cells=.4 Red blood cells=28.6
I am officially neutropenic today so they are going to start some antibiotics just in case since I am more prone to infection. My stem cells (bone marrow) are supposed to arive sometime tonight. Dr Bearman said they will infuse them tomorrow morning because the shelf life is 48 hours. So it looks like my new birthday will be 2 April.
Nanette will arrive about 1PM today. I walked this morning and will go out for 20 more minutes now. A hospital chaplain and dietician paid me a visit today along with the nurses, doctor & nurse practioner. Never a dull moment.
The day went downhill from there. Diarrhea, temperature of 102 and urinary frequency started and continued throughout the night. They took urine and stool samples and started Jeff on both intravenous antibiotics--cefepime as well as oral levaquin. I stayed overnight with him. He was up every 10-20 minutes to the bathroom. I have run 2 loads of wash since last night. His appetite isn't good at this point. He is doing the brat diet at this time. So long for now.
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