Back at LDS Hospital. You know, I was pretty sure that at some point he would be readmitted. But really did not think it would be this soon or for the reason of DEHYDRATION!
John felt really good when he first got home. He was still drinking most of his calories and was doing ok with that. After a few days he started getting nauseas. He threw up like once a day for a few days. He called the clinic here and they said once a day is not a big deal. He was getting more and more tired and Friday threw up a few times. Saturday even more. He called and talked to a PA. She said it did not sound awful enough to come in but if it got worse to call. He threw up more Saturday and threw up everything Sunday morning. He was so tired, off balance and shaky. I called the hospital at about 10 am. Tony ( the clinic nurse) said to bring him in. So I quickly got ready and got the kids ready for church. Then we came to the clinic. They did vitals and his blood pressure was super low. 85/50. Tony knew immediately he was dehydrated and put him on fluids and said he would be admitted. His lab work came back quickly and his numbers were WAY messed up. Kidney levels were super super high, platelets were way down.
They put fluids in him as fast as they could and did a ton more blood work. So, the funny thing is that he has not thrown up or been nauseas since being here. Obviously the real problem is the dehydration. His kidneys were hit really hard in 6 days. One week ago they were totally normal. He is doing ok and is slowly getting a little better. Not as fast as I would like though. His creatinine levels are dropping but very slowly. He should be fully hydrated now with all the fluids they are putting in him. His out put is not enough though. He has not been able to pee at all. They had to insert a catheter last night to empty his bladder. Now he has one in for good. His kidneys are processing some urine but not everything is getting through. He is seeing a nephrologist ( kidney dr) daily. Today he basically said to give John more fluids and see what happens.
His platelets keep going down so that is something to watch too. Most likely an infection, but still waiting for the results of the blood culture to see what that says. The good news is that we came in yesterday pretty sure he had GVHD of the stomach. But now are pretty sure his stomach is totally fine, no GVHD, just severe dehydration. John had not peed in 2 days, but had not told me. I though it had been less than a day. When we got here yesterday he told me he didn't remember the last time he peed!!
So now we are hoping for his kidneys to start working properly and he wants out of here Thursday.
Monday, June 24, 2013
Friday, June 21, 2013
Been HOME for 1 week!
SO SO glad to have John home. Hospital living is crazy!!! We all kind of get used to it, but it is not the best. Well, it is the best for John and what he needs :)
He probably broke some sort of record and was home having only been in the hospital for 25 days for his Allogeneic transplant. Only 4 days longer than for his Autologus transplant. He did awesome. He also never went on TPN which was one of his goals. (and super rare, like 1 out of every 30 patients with an Allo transplant can manage to do that). He came home with a good amount of energy and wanting to do way too much. He does nap every day and sleeps about 10 hours a night. And at least at home he gets to sleep without being interrupted every 2-4 hours. He is having issues eating food though. When he started getting mouth sores he drank all his calories with Ensure and Boost drinks. He did lose about 20 pounds and the last time he weighed this little was probably about 15 years ago. I am just glad that he had the weight to lose and was not skin and bones going into this. And ya, he is pretty much skin and bones now. So, the drinks were great. The chemo has ruined his taste buds (again) and nothing tastes good at all. Last time baked potatoes were kind of his go to food. No, nothing tastes good. But for some reason the drinks are ok. He is gratefully maintaining his weight of 185 pounds but only consuming about 1500 calories a day. He does try food every day, he says it all tastes like dirt or cat puke! We are also walking about 1 mile every night. Hopefully soon we can increase it to 1.5 miles.
We are all taking it on day at a time. John is able to do some things around the house, but that list is limited. He has NO immunity and has to be very careful. He is not allowed to mow, weed, dust, vacuum. He is allowed to do laundry :) He should not go any where public for a long time (months). And should not be out in the sun. He can sun burn super easily right now and that can bring out T cells and that can cause GVHD! So far he does not have any GVHD. Which is pretty much good. You kind of want a little bit because that also means you have GHM (graft vs myeloma). Which you do want. You do want the donors cells to be fighting the cancer cells. If he does get it we just hope it is easy to treat skin rashes :)
All of our lives have changed a lot. We have to be even more careful with germs and hand washing than we were before. In about 1 -2 years John will actually be re immunized as if he were a baby. Since being home we had 2 kids with fevers earlier this week and last night Abby was puking and has a fever!!! It is crazy how much our kids have been sick since John has had cancer. I pretty much quarantine the kids to their rooms and sanitize like crazy. I have to clean all of our ceiling fans twice a week, sanitize all 3 bathrooms every day (mine and Johns usually twice a day), sanitize the kitchen once a day, dust the whole house once a week. And John can not be in the room when I dust or vacuum. Every time we come in the house we all wash our hands. I have to wash our bed sheets twice a week. I thought I was pretty good at cleaning before, but I was not this good.
For now John has an appointment once a week - probably for a very long time it will be at least once a week. They do a full blood work up test and check vitals and he meets with a Dr. and a PA. Every thing has been pretty good so far. A big thing to watch is his liver! But in one of the Dr.'s words they will "watch him like a hawk" :) We LOVE all of John's Dr.'s. They are great and super helpful and are doing everything they can for John.
We recently realized how blessed we are to live here. After you have an Allo transplant you HAVE to live within 45 minutes of LDS Hospital for at least 100 days past transplant. The main reason is that if you go septic you could die in that amount of time. They want you close if you need them. They do not want you to go to any other ER or hospital. I have been told to not call 911, but just put him in my car, call East 8 and get him there. The Dr.'s there do not like other Dr.'s seeing their patients. They know the history and they will be the ones to help! Yes patients do go to ICU sometimes. But East 8 will still have a Dr and PA check on you daily. We live 20-25 min from the hospital - we are so glad we did not have to move closer.
John is excited for his 41st birthday next week. He is hosting a bone marrow drive on his birthday. He is super excited about it and his goal is to add 100 people to the registry. I can not believe how much has happened in this past year. Last year for his 40th birthday I surprised him and took him to San Francisco for the weekend and to a Giants game! That seems like forever ago some times and other times seems like it just happened. Our new goal is to go to Paris for my 40th Birthday!
Now our trick is to keep John home and out of the hospital. But any fever, flu, pneumonia symptoms, or big drops or raises in his counts and he will be admitted. Getting past the first 100 days is the toughest part. We are at 22 days past transplant!!
He probably broke some sort of record and was home having only been in the hospital for 25 days for his Allogeneic transplant. Only 4 days longer than for his Autologus transplant. He did awesome. He also never went on TPN which was one of his goals. (and super rare, like 1 out of every 30 patients with an Allo transplant can manage to do that). He came home with a good amount of energy and wanting to do way too much. He does nap every day and sleeps about 10 hours a night. And at least at home he gets to sleep without being interrupted every 2-4 hours. He is having issues eating food though. When he started getting mouth sores he drank all his calories with Ensure and Boost drinks. He did lose about 20 pounds and the last time he weighed this little was probably about 15 years ago. I am just glad that he had the weight to lose and was not skin and bones going into this. And ya, he is pretty much skin and bones now. So, the drinks were great. The chemo has ruined his taste buds (again) and nothing tastes good at all. Last time baked potatoes were kind of his go to food. No, nothing tastes good. But for some reason the drinks are ok. He is gratefully maintaining his weight of 185 pounds but only consuming about 1500 calories a day. He does try food every day, he says it all tastes like dirt or cat puke! We are also walking about 1 mile every night. Hopefully soon we can increase it to 1.5 miles.
We are all taking it on day at a time. John is able to do some things around the house, but that list is limited. He has NO immunity and has to be very careful. He is not allowed to mow, weed, dust, vacuum. He is allowed to do laundry :) He should not go any where public for a long time (months). And should not be out in the sun. He can sun burn super easily right now and that can bring out T cells and that can cause GVHD! So far he does not have any GVHD. Which is pretty much good. You kind of want a little bit because that also means you have GHM (graft vs myeloma). Which you do want. You do want the donors cells to be fighting the cancer cells. If he does get it we just hope it is easy to treat skin rashes :)
All of our lives have changed a lot. We have to be even more careful with germs and hand washing than we were before. In about 1 -2 years John will actually be re immunized as if he were a baby. Since being home we had 2 kids with fevers earlier this week and last night Abby was puking and has a fever!!! It is crazy how much our kids have been sick since John has had cancer. I pretty much quarantine the kids to their rooms and sanitize like crazy. I have to clean all of our ceiling fans twice a week, sanitize all 3 bathrooms every day (mine and Johns usually twice a day), sanitize the kitchen once a day, dust the whole house once a week. And John can not be in the room when I dust or vacuum. Every time we come in the house we all wash our hands. I have to wash our bed sheets twice a week. I thought I was pretty good at cleaning before, but I was not this good.
For now John has an appointment once a week - probably for a very long time it will be at least once a week. They do a full blood work up test and check vitals and he meets with a Dr. and a PA. Every thing has been pretty good so far. A big thing to watch is his liver! But in one of the Dr.'s words they will "watch him like a hawk" :) We LOVE all of John's Dr.'s. They are great and super helpful and are doing everything they can for John.
We recently realized how blessed we are to live here. After you have an Allo transplant you HAVE to live within 45 minutes of LDS Hospital for at least 100 days past transplant. The main reason is that if you go septic you could die in that amount of time. They want you close if you need them. They do not want you to go to any other ER or hospital. I have been told to not call 911, but just put him in my car, call East 8 and get him there. The Dr.'s there do not like other Dr.'s seeing their patients. They know the history and they will be the ones to help! Yes patients do go to ICU sometimes. But East 8 will still have a Dr and PA check on you daily. We live 20-25 min from the hospital - we are so glad we did not have to move closer.
John is excited for his 41st birthday next week. He is hosting a bone marrow drive on his birthday. He is super excited about it and his goal is to add 100 people to the registry. I can not believe how much has happened in this past year. Last year for his 40th birthday I surprised him and took him to San Francisco for the weekend and to a Giants game! That seems like forever ago some times and other times seems like it just happened. Our new goal is to go to Paris for my 40th Birthday!
Now our trick is to keep John home and out of the hospital. But any fever, flu, pneumonia symptoms, or big drops or raises in his counts and he will be admitted. Getting past the first 100 days is the toughest part. We are at 22 days past transplant!!
Saturday, June 8, 2013
Day 10 ( 19 days in hospital)
Well, things are going ok. John was able to switch rooms yesterday and that was fabulous. He was tired of staring at a brick wall. Two and a half weeks of that got really old. He was actually waiting for a certain room though. But this one opened up. He looked at it and wanted it. It has 2 huge windows and he loves it. So nice to have a change of scenery.
He has more mouth sores :( Could be worse though. But bad enough to be on a pain pump with a constant drip of dilaudid. It definitely helps. His tummy pain is completely gone :) He has been "eating" ok. His calories actually consist mostly of ensure drinks and shakes. But, he's getting about 1500 calories a day so that is good. Although the dietitians would love it to be closer to 2000.
The good news is that his counts have started coming up. Pretty early too :) That was our plan though. His platelets, hematocrits and red blood cells all came up with out a transfusion yesterday. Also his white blood cells have been at 0 for about a week or more. They were at 100 today!
So, to come home: no fevers, no infections, in GVHD, and his neutrophils have to be at 500. Those were still at 0 today. Pretty sure those will start coming up tomorrow though. Once they start coming up it usually only takes a few days to get to 500!! And once the neutrophils start coming in they will start to heal his mouth sores pretty quickly! So, now we wait and hope and pray.
He has more mouth sores :( Could be worse though. But bad enough to be on a pain pump with a constant drip of dilaudid. It definitely helps. His tummy pain is completely gone :) He has been "eating" ok. His calories actually consist mostly of ensure drinks and shakes. But, he's getting about 1500 calories a day so that is good. Although the dietitians would love it to be closer to 2000.
The good news is that his counts have started coming up. Pretty early too :) That was our plan though. His platelets, hematocrits and red blood cells all came up with out a transfusion yesterday. Also his white blood cells have been at 0 for about a week or more. They were at 100 today!
So, to come home: no fevers, no infections, in GVHD, and his neutrophils have to be at 500. Those were still at 0 today. Pretty sure those will start coming up tomorrow though. Once they start coming up it usually only takes a few days to get to 500!! And once the neutrophils start coming in they will start to heal his mouth sores pretty quickly! So, now we wait and hope and pray.
Thursday, June 6, 2013
Day 8 ( 17 days in hospital)
It is kind of funny, but this hospital stay seems to be going by kind of fast. I am guessing once it hits 3 weeks that it will feel like forever and slow down. ( because 3 weeks is how long John was here for his auto). But so far it has not been awful. Probably because we know what to expect and we know so much of the staff now. This hospital is amazing. Well, East 8 is amazing! We love everyone here. It is so nice to feel so comfortable here. I love that it doesn't really matter who is John's nurse for the day. When I am in the halls any nurse that knows him will stop me and ask how he is doing. Then give advice too. Every one is family here. John has a new Dr. who is here helping out for a few months. We love her. She is from India but has spent most of her life in New York City. She is an oncologist and hematologist in India. She is great and we love sitting and talking stories with her. We will really miss her when she leaves.
John is doing ok. Nothing out of the ordinary. He is super tired and not eating a ton. But grateful he is still not on TPN. He is really hoping to avoid TPN this time. He is only eating about 1300 calories a day and has lost over 15 pounds. Unfortunately it is moystly muscle. He has not weighed this little since he got home from his mission. We are grateful he didn't come in here under weight. He also is starting to get some mouth sores. Not too bad though. He has a few on his tongue. And now maybe a few down his throat. But still able to drink ok. Most of his calories are through drinks. A lot of Ensure drinks. John was having a pretty bad pain in his belly. Right above his belly button. They did a CT scan and nothing was found. So that was good. It is starting to get better on its own. We were worried it might be typhlitis again and we are glad that it isn't.
The other day a sweet lady came by John's room. She was a patient here and had an auto transplant 2 years ago. To celebrate her "birthday" she brought cute little gifts to all the patients here. It was the neatest thing. And now that is what John wants to do :)
The kids are all doing ok. Abby's last day of school was yesterday and for the other kids today is their last day of school. I can not believe how fast this year went by. I think they are all excited to not have homework :) Last week John's mom was here helping out. This week my Aunt is here. It is so so helpful. They get kids to school and do laundry and shopping. They fix dinners. I am usually at the hospital from about 9 am - 5:30 pm each day. It is so nice to be able to spend time with John. We joke that we have our best dates here. We watch "Lost", play games, take walks, sit and talk. We never get to spend this much time together at home. John has had some pretty blah days where I do a lot of reading. In 17 days I have read all 3 Hunger Games :) Thank you Katniss and Peeta for getting me through these past few weeks :)
As long as there aren't any complications, John can come home when his counts come up to a certain level. My goal is still Father's Day.
John is doing ok. Nothing out of the ordinary. He is super tired and not eating a ton. But grateful he is still not on TPN. He is really hoping to avoid TPN this time. He is only eating about 1300 calories a day and has lost over 15 pounds. Unfortunately it is moystly muscle. He has not weighed this little since he got home from his mission. We are grateful he didn't come in here under weight. He also is starting to get some mouth sores. Not too bad though. He has a few on his tongue. And now maybe a few down his throat. But still able to drink ok. Most of his calories are through drinks. A lot of Ensure drinks. John was having a pretty bad pain in his belly. Right above his belly button. They did a CT scan and nothing was found. So that was good. It is starting to get better on its own. We were worried it might be typhlitis again and we are glad that it isn't.
The other day a sweet lady came by John's room. She was a patient here and had an auto transplant 2 years ago. To celebrate her "birthday" she brought cute little gifts to all the patients here. It was the neatest thing. And now that is what John wants to do :)
The kids are all doing ok. Abby's last day of school was yesterday and for the other kids today is their last day of school. I can not believe how fast this year went by. I think they are all excited to not have homework :) Last week John's mom was here helping out. This week my Aunt is here. It is so so helpful. They get kids to school and do laundry and shopping. They fix dinners. I am usually at the hospital from about 9 am - 5:30 pm each day. It is so nice to be able to spend time with John. We joke that we have our best dates here. We watch "Lost", play games, take walks, sit and talk. We never get to spend this much time together at home. John has had some pretty blah days where I do a lot of reading. In 17 days I have read all 3 Hunger Games :) Thank you Katniss and Peeta for getting me through these past few weeks :)
As long as there aren't any complications, John can come home when his counts come up to a certain level. My goal is still Father's Day.
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