It was one year ago today that we met Dr Khalil and did Stevan's bone biopsy and aspiration, leading us to Stevan's diagnosis. We at least had a name, some answers, and somewhere to start. Its been a hard emotional road. Sometimes we don't know where we are going or what is around the next corner but we keep traveling down the path letting God lead us.
Yesterday was a long day for us. We were up and out of the house by 6am in order to go up to OKC to go in for Stevan's first follow up in the clinic at the Stephenson Cancer clinic.
We arrived at the lab at 10:30 for them to draw blood from his line, however they couldn't get it to draw. The nurse had to put Activace in his line and let him sit for 20 minutes. She tried to draw it again, but she was still having trouble. She decided that Stevan needed to go to lunch and let the Activace do its job. After an hour we went back up stairs and she was finally able to get it to draw.
Stevan was then ready for his dose of antibiotic, Vancomycin. The infusion room let us use their machine, so I set up his line and let him run for his hour dose before we went on up to his appointment with Dr Holter.
The lab gave us his numbers... All is very good!
white cells 5.1
red cells 3.56 just a little low
hemoglobin 10.7 a little low still
platelets 405 Great number!
There were two numbers that showed how his kidneys are functioning. They were about double their high normal number. The nurse said that was normal after him receiving chemo, but they would be worried if those numbers were triple the high normal number.
When we saw Dr Holter, I had to snitch on Stevan. After being couped up in the BMT for almost four weeks, it was difficult for Stevan not to go outside and try to do things, especially when the kids and I were working outside in the garden trying to get it back under control. On Tuesday he got on the mower to try and cut some parts of the garden down. When I kicked him off of it, he then went and started the tiller and began to till. Her reaction, "REALLY! What part of don't play in the dirt and don't mow do you not understand?" There was several times I have had to chase after him with a mask for him to put on when he has gone outside. His line dressing is having some problems staying dry and clean when he is outside in the heat.
After Dr Holter examined him, she said that his numbers looked good so he doesn't need to wear his mask outside, but he still can't play in the dirt or mow and since she is worried about his line getting infected with sweat, she told him that he couldn't do anything that will cause him to sweat. With temperatures soaring in the 90s and close to 100, he can't do anything outside. He can eat fresh fruit and vegetables now (he has been already, since I have been carefully washing and cleaning it at home for him). She cautioned him to stay away from salad bars though.
Finally, Dr Holter said she had to order one more blood test and a 24 hour urine test to finally look at his protein count to see if the Myeloma is still there. This will determine whether or not he will need to do a tandem transplant. If there is no detection of protein, there will be no additional transplant and he will be considered in "remission". She does want him to do a few months of maintenance medicine. She says that some of the research has shown that it helps with keeping the Myeloma at bay. We hope she will discuss this in more detail on our next visit in four weeks.
Us before Myeloma
Celebrating our 5 year Anniversary a few days early. Wow! We've both changed over the past few years.
Friday, June 22, 2012
Sunday, June 17, 2012
Happy Father's Day +25
It has been quite busy around here the last couple of days. When we got home on Thursday, we were met by Sheila, the nurse from Health Back, to administer Stevan's antibiotic and train me on how to give it. We had another nurse come in at 2am and yet another one at 10:30am on Friday to watch me and make sure I would be able to handle the process.
The kids and I got up Friday morning and went to fill six prescriptions for Stevan and pick up his Father's day gift. We then had to beat it back home to meet up with the nurse. It was then back to Broken Bow to pay some bills, run some errands, grab lunch, go to the bank and finally to the grocery store to get food. Stevan ventured out with us, but wore a face mask to protect him from germs.
We had a couple of different people come to visit on Saturday. It was nice to catch up with friends and family, but Stevan was worn out and had to take a nap. It was pretty much a lazy day the rest of the afternoon for us.
Today we were able to attend church this morning. Stevan wore a mask, a bandanna around his head and hand sanitizer in his pocket. It was nice to be back and have everyone welcome us back home.
We came home and celebrated Father's Day by eating goulash, giving Stevan a big candy card that the kids made for him. It
was too cute not to share, so I've posted some pictures of it.
I have been administering Stevan's
medicine to him since Friday afternoon. It is quite an ordeal. I have to first
clean the ends of each line then flush both with saline. I then hook up the IV
to the pump and to Stevan's central line. It runs for 1 1/2 hours, which I then
disconnect him and flush both lines with saline again. I finish by placing
heparin in both lines to keep them from clotting up. I do this every 8 hours.
We have been adjusting the times
slowly to keep from having to dose him in the middle of the night. We have finally
gotten it to 5am, 1pm, and 9pm. We can deviate about 30 minutes so we can move
the times a bit if we need to from day to day if we need to adjust when we give
him his medicine. Tonight as I was trying to get him set up, the pump kept
giving me an error. After restringing the tubing a couple dozen times and still
getting an error, I finally called Walgreen's after hours number. Guess what,
our pump has gone out! WHAT? Are you kidding me?
Temporary solution: figure out how
to adjust the clamp to get 15 drips a minute. After several tries, I think I
finally got it. Final solution: they are to have another pump here for us by
noon. I sure hope so! I don't like having to do this part. I'm afraid I'm going
to screw it up.
I'm going to close this out for now. I have a lot still to
get done around the house: get the weed-eater out around the house, weed my
poor garden so that I can walk through it with out being afraid of snakes, till
the garden, and begin picking squash, tomatoes, peppers, okra, corn, and beans.
I will continue to keep you updated, but it might now be every day.
Thursday, June 14, 2012
Going Home Day +22
We got the news early this morning... WE ARE GOING HOME!
Stevan's case worker, Deb, is putting everything in place for Health Back of Idabel to come take care of his line and assist me in giving his antibiotics. He will not have to be hooked up to a saline drip 24/7. I will have to administer his antibiotic 3 times a day over the next 8 weeks, which will take about an hour to run.
The Dr Kevin, who helped Dr White yesterday during the biopsy came in this morning said that the culture has not grown as of this morning. He did say there was some white blood cells in the sample, which could mean there is bacteria. They will continue to grow the culture to confirm their suspicions and we will treat is as a bone infection.
I'm packing things up and will be loading everything in just a bit. We are still waiting on the paperwork and the pharmacy to bring up his antibiotic for us to take home. We will have to make a quick trip home in order to meet up with the home health care nurse at the house to get us started.
I'm a little sad to leave the wonderful nurses and will miss talking to the other caregivers and patients here in the Bone Marrow Transplant Unit. They will have a special place in our hearts as I continue to pray for several patients that are here and having a hard time.
Thank you for all the prayers. It has gotten us through some rough times over the past weeks. God has us in his hands, its very apparent.
Stevan's case worker, Deb, is putting everything in place for Health Back of Idabel to come take care of his line and assist me in giving his antibiotics. He will not have to be hooked up to a saline drip 24/7. I will have to administer his antibiotic 3 times a day over the next 8 weeks, which will take about an hour to run.
The Dr Kevin, who helped Dr White yesterday during the biopsy came in this morning said that the culture has not grown as of this morning. He did say there was some white blood cells in the sample, which could mean there is bacteria. They will continue to grow the culture to confirm their suspicions and we will treat is as a bone infection.
I'm packing things up and will be loading everything in just a bit. We are still waiting on the paperwork and the pharmacy to bring up his antibiotic for us to take home. We will have to make a quick trip home in order to meet up with the home health care nurse at the house to get us started.
I'm a little sad to leave the wonderful nurses and will miss talking to the other caregivers and patients here in the Bone Marrow Transplant Unit. They will have a special place in our hearts as I continue to pray for several patients that are here and having a hard time.
Thank you for all the prayers. It has gotten us through some rough times over the past weeks. God has us in his hands, its very apparent.
Wednesday, June 13, 2012
Biopsy Day +21
Today started like most of the others as of lately. Stevan slept in as long as he could considering he couldn't eat anything before his biopsy.
They came to wheel him downstairs about 1:30pm. I walked down with him and scratched his head while we waited in holding, as they got him prepped and ready for the operating room. Dr White came in to see him and let him know all they were going to make an incision in his arm in order to use a needle about the size of a straw to pull out a piece of bone and then some fluid from the joint. They knocked him out for the proceedure, which is why they took him to the OR.
The biopsy took about 30 minutes. They kept Stevan in recovery for about two hours. Dr White came out and told me everything went well. He said that everything looked ok, but he really expected it to. The fluid he pulled out looked like blood. Dr White said that they would set them up to grow cultures, which takes at least 24 hours and as long as 5 days. At that time they will be able to determine if Stevan's fever was caused by what kind of infection, if there is an infection there. Dr White said that he was pretty confidant that is what the problem is.
If it is the bone infection, Osteomyelitis, it will require 6 to 8 weeks of IV antibiotics, called Vancomycin. To get a head start on the treatment, they went ahead and started him on it.
Stevan's arm is giving him a lot of pain, since the biopsy. They are giving him morphine and oxycodone to help take the edge off. It will be sore for several days.
Thank you for keeping up with us. Our prayers tonight is that the infection will grow very quickly on the culture so they will know what the problem is with Stevan and they will send us home.
 |
| Stevan acting up as he gets dressed up before going in for his biopsy. |
They came to wheel him downstairs about 1:30pm. I walked down with him and scratched his head while we waited in holding, as they got him prepped and ready for the operating room. Dr White came in to see him and let him know all they were going to make an incision in his arm in order to use a needle about the size of a straw to pull out a piece of bone and then some fluid from the joint. They knocked him out for the proceedure, which is why they took him to the OR.
The biopsy took about 30 minutes. They kept Stevan in recovery for about two hours. Dr White came out and told me everything went well. He said that everything looked ok, but he really expected it to. The fluid he pulled out looked like blood. Dr White said that they would set them up to grow cultures, which takes at least 24 hours and as long as 5 days. At that time they will be able to determine if Stevan's fever was caused by what kind of infection, if there is an infection there. Dr White said that he was pretty confidant that is what the problem is.
If it is the bone infection, Osteomyelitis, it will require 6 to 8 weeks of IV antibiotics, called Vancomycin. To get a head start on the treatment, they went ahead and started him on it.
Stevan's arm is giving him a lot of pain, since the biopsy. They are giving him morphine and oxycodone to help take the edge off. It will be sore for several days.
Thank you for keeping up with us. Our prayers tonight is that the infection will grow very quickly on the culture so they will know what the problem is with Stevan and they will send us home.
Tuesday, June 12, 2012
Still Waiting Day +20
Yes, we are still here at OU Medical. Nothing happened yesterday except they have decided to take Stevan off the antibiotics for the next 48 hours in order for them to perform a biopsy of the bone in his arm.
There was talk of the biopsy occurring today, but this morning Dr Jeremy White, Stevan's orthopedic oncologist, came in this morning to get the ok from us on what he was expected to do. He told us that the rod is not loose inside the bone, but he would schedule Stevan for the biopsy tomorrow afternoon. This will consist of him going into the OR and being sedated, in order for Dr White to stick a needle into the bone and into the joint to pull out fluid and bone to grow a culture. He said that if it shows there is infection, the rod could be taken out in order to help resolve the issue as a last resort.
Dr Holter came in and told us after the biopsy, they would put Stevan back on antibiotics for 24 hours and if all was well, she would release him. Stevan asked her who was then in charge of him, with so many Doctors now involved again. She said that Dr White is in charge of the arm and infection. She is in charge of the transplant for the week after he is released and then he will be handed back over to Dr Khalil, Stevan's oncologist. Stevan will continue to see him in the weeks to come so that Dr Khalil can follow his blood counts. Dr Holter did say that if the biopsy shows that there is an infection in his bone, she will set up home health care so they can come to the house and administer his IV antibiotics over the next 6 to 8 weeks.
So that is the plan as of now. Stevan had some cramping in his neck again this morning. He ate breakfast, a couple of bowls of cereal, a first in a few days. He's now taking a nap. I'm about to get out for a few hours and walk the mall and Wal-mart.
There was talk of the biopsy occurring today, but this morning Dr Jeremy White, Stevan's orthopedic oncologist, came in this morning to get the ok from us on what he was expected to do. He told us that the rod is not loose inside the bone, but he would schedule Stevan for the biopsy tomorrow afternoon. This will consist of him going into the OR and being sedated, in order for Dr White to stick a needle into the bone and into the joint to pull out fluid and bone to grow a culture. He said that if it shows there is infection, the rod could be taken out in order to help resolve the issue as a last resort.
Dr Holter came in and told us after the biopsy, they would put Stevan back on antibiotics for 24 hours and if all was well, she would release him. Stevan asked her who was then in charge of him, with so many Doctors now involved again. She said that Dr White is in charge of the arm and infection. She is in charge of the transplant for the week after he is released and then he will be handed back over to Dr Khalil, Stevan's oncologist. Stevan will continue to see him in the weeks to come so that Dr Khalil can follow his blood counts. Dr Holter did say that if the biopsy shows that there is an infection in his bone, she will set up home health care so they can come to the house and administer his IV antibiotics over the next 6 to 8 weeks.
So that is the plan as of now. Stevan had some cramping in his neck again this morning. He ate breakfast, a couple of bowls of cereal, a first in a few days. He's now taking a nap. I'm about to get out for a few hours and walk the mall and Wal-mart.
Sunday, June 10, 2012
Another Day In The BMT Unit Day +18
Another boring day around here at OU Medical in the Bone Marrow Transplant Unit. Stevan had more cramping on the left side of his neck this morning. Dr Mo ordered a stronger kind of muscle relaxer for him to use from now on. It seems to be working a lot better than the Flexeril. He slept til about noon, when I finally went and subway and picked us up a sandwich. His redheaded nurse, Jenni, gave us a map tonight that has a list of local restaurants around close to the hospital. I'm going to have to venture out and try some to the other local places around. We both miss our home cooking.
Stevan took a two hour nap this afternoon before walking the longest he's ever done. A whole 35 minutes back and forth down our small hallway. Then into the shower and resting for the rest of the night. He only ate a small amount of dinner, which has been normal here lately.
A friend of Stevan's cousin, Tabatha, stop by to visit us. Pat Robinson was admitted four days ago to remove a spot of cancer off of her lung. For someone who had part of her lung taken out, she looked amazing. She had talked to Tabatha and learned that we were here at the same hospital. So with a tube still in her chest to drain fluid from her lung she asked her doctor if she could come upstairs to see us. We had a nice visit with her and learned her story and told her ours. It was nice to talk to someone from home. Lucky her, she gets to go home tomorrow.
I'm finishing up laundry tonight. I've been given the code to the room that contains a washer and dryer for me to use. Its a mini one but it beats going somewhere else to do laundry and having to wait for a couple of hours to get it done. The only catch is I have to run a bleach cycle before putting Stevan's clothes in for sanitary purposes. I can handle that!
Hopefully tomorrow we will find out what the doctors have in store for Stevan. I asked the nurses if the antibiotics and anti-fungal was keeping the fever at bay. She said yes. The antibiotic were currently treating the symptoms. If Stevan does have an infection of the bone, it will have to be treated differently than what they are currently doing. So if the doctors take him off of antibiotic, then his fever will return more than likely before they take his bone biopsy. They will then more than likely be forced to put him back on antibiotics to get his fever back down until the results come back with the answers they are looking for to they can treat it specifically.
Tune it tomorrow for what they are planning next. We can't wait either. Thank you for the prayers.
Stevan took a two hour nap this afternoon before walking the longest he's ever done. A whole 35 minutes back and forth down our small hallway. Then into the shower and resting for the rest of the night. He only ate a small amount of dinner, which has been normal here lately.
A friend of Stevan's cousin, Tabatha, stop by to visit us. Pat Robinson was admitted four days ago to remove a spot of cancer off of her lung. For someone who had part of her lung taken out, she looked amazing. She had talked to Tabatha and learned that we were here at the same hospital. So with a tube still in her chest to drain fluid from her lung she asked her doctor if she could come upstairs to see us. We had a nice visit with her and learned her story and told her ours. It was nice to talk to someone from home. Lucky her, she gets to go home tomorrow.
I'm finishing up laundry tonight. I've been given the code to the room that contains a washer and dryer for me to use. Its a mini one but it beats going somewhere else to do laundry and having to wait for a couple of hours to get it done. The only catch is I have to run a bleach cycle before putting Stevan's clothes in for sanitary purposes. I can handle that!
Hopefully tomorrow we will find out what the doctors have in store for Stevan. I asked the nurses if the antibiotics and anti-fungal was keeping the fever at bay. She said yes. The antibiotic were currently treating the symptoms. If Stevan does have an infection of the bone, it will have to be treated differently than what they are currently doing. So if the doctors take him off of antibiotic, then his fever will return more than likely before they take his bone biopsy. They will then more than likely be forced to put him back on antibiotics to get his fever back down until the results come back with the answers they are looking for to they can treat it specifically.
Tune it tomorrow for what they are planning next. We can't wait either. Thank you for the prayers.
Saturday, June 9, 2012
Lazy Day +17
No fever today. Yeah!!! Stevan slept most of the day. He said that he was really tired. The nurses told him laying in bed all day made him sleepy. We have all been trying to get him up out of bed earlier in the day and to walk more through out the day, but since there isn't far to walk and really no where to go and nothing to see, he doesn't see a reason too.
Stevan is still having some cramping in his neck. Tonight I massaged his neck and back and I noticed he has some inflammation along his shoulder and at the back of his neck. We will be mentioning it to the doctor in the morning. We also have to talk to the doctor about increasing his Flexeril from 5mg to 10mg. The 5mg just isn't cutting it.
Both of us are tired of the food at the hospital. The food is pretty good, but when you have a limited amount of food to choose from and your eating it three times a day for now 20 days, it time to start getting food around town. We had Wendy's today and previously I've brought in Pizza Hut, Church's Chicken, Healthy Hearth, Sonic and Taco Bell. I have to watch out for any fresh fruit and vegetables on Stevan's food because he cant have any due to bacteria can be carried on them. He can't have lettuce, tomatoes or onions on anything. All of his drinks have to come in a bottle form, no fountain drinks except for shakes. Even everything that is ordered up from the cafeteria has to be covered to keep out any kind of bacteria.
I will close for now. I'm sure there will be little report tomorrow. Its the weekend and nothing seems to happen around here during the weekend.
SubNote: I have changed some setting on the blog. I think I have fixed the problem with being able to make comments on the blog. I know that some people are checking the blog on their phones and I'm not sure you will be able to leave comments when using your phone.
Stevan is still having some cramping in his neck. Tonight I massaged his neck and back and I noticed he has some inflammation along his shoulder and at the back of his neck. We will be mentioning it to the doctor in the morning. We also have to talk to the doctor about increasing his Flexeril from 5mg to 10mg. The 5mg just isn't cutting it.
Both of us are tired of the food at the hospital. The food is pretty good, but when you have a limited amount of food to choose from and your eating it three times a day for now 20 days, it time to start getting food around town. We had Wendy's today and previously I've brought in Pizza Hut, Church's Chicken, Healthy Hearth, Sonic and Taco Bell. I have to watch out for any fresh fruit and vegetables on Stevan's food because he cant have any due to bacteria can be carried on them. He can't have lettuce, tomatoes or onions on anything. All of his drinks have to come in a bottle form, no fountain drinks except for shakes. Even everything that is ordered up from the cafeteria has to be covered to keep out any kind of bacteria.
I will close for now. I'm sure there will be little report tomorrow. Its the weekend and nothing seems to happen around here during the weekend.
SubNote: I have changed some setting on the blog. I think I have fixed the problem with being able to make comments on the blog. I know that some people are checking the blog on their phones and I'm not sure you will be able to leave comments when using your phone.
Friday, June 8, 2012
And Things Had Been Going So Well Day +16
We have been at the hospital for 19 days now. On Day 11 post transplant (14 days in hospital) we were in hopes of going home in a couple of days. Yesterday we were told maybe Monday. Today... they wont tell us when Stevan will be released. But they are going to aim for us to be home by next Friday.
This morning I told you that we were waiting for the doctors to come in and tell us the result of the bone scan done yesterday. Dr Holter told us that there was something peculiar on his left humours bone (the bone that was broken last year) where the rod was placed in his arm last year. She was sending Infectious Diseases and Orthopedics to come in and talk to Stevan.
One of the Infectious Disease doctors came in and after the exam and scan, they believe he has Osteomyelitis, an infection of the bone. This can occur when there is bacteria somewhere in the body. Since Stevan's immune system had be compromised by the chemotherapy and stem cell transplant, it is possible for this bacteria to go to the area of the titanium rod and grow there.
They are not sure what kind of bacteria it is, so they are wanting to get a bone biopsy of the area infected. In order to do this they want Dr Holter to stop the antibiotics she is giving Stevan so that they can get a biopsy that is not effected by antibiotics. They want him off of antibiotics for at least 48 hours.
First they want to get a MRI of the shoulder and arm. This will give them a better look at what is going on with the bone. That probably wont happen til Monday.
Last night Stevan had some problem with his central line. It was giving the nurse problems when she went to draw his labs. She could flush it, but it wouldn't draw blood. They decided to put a blood thinner in the line to sit and dissolve what ever was blocking the flow. It worked but this morning, blood was leaking around the line site, so they cleaned it and redressed the port area. For some reason it began to leak again and by this afternoon it looked bad. They tried to apply light pressure on the area hoping it would help stop it from seeping. It didn't work.
The unit supervisor, Debbie ordered platelet for Stevan, even though his platelet count is the highest its been. She is in hopes that it would help stop the bleeding by boosting it again. It helped, but its still leaking a bit.
On to the counts for the last few days.
6/6 6/7 6/8
White cells 3.2 2.5 1.8
Red cells 3.01 2.78 2.70
Platelets 22 55 70
His potassium has continued to be around 3.3 which has continued to get him IV potassium each morning. As you can see his white count has continued to drop so he was given a nuepogen shot this afternoon. This lead me to ask the nurse the question "If Stevan's got an infection, why is his white count dropping? It should be going up? Right?" Her answer, "Yes, you would think so." Guess I will have to ask the doctor this in the morning.
I have to end this post by switching topics a bit. We of course have been here a few days longer than expected and obviously more to come. We have met some pretty amazing people in the BMT unit who are going through transplants as well. Most are having Allogeneic (donor cells) transplant. It has given me the opportunity to talk to other caregivers.
I met one gentleman whose wife had an allo transplant using her sisters cells. He was a truck driver and she had been so sick that he took several days off to stay with her. He was so worried about her lack of progress after the transplant. She has had a lot of visitor up here, many her siblings, considering she is one of 12 children in her family. She took a turn for the worse Wednesday night and Thursday morning she was taken to ICU. I don't know her name but please remember her in your prayers. I could see the pain and frustration on her families faces.
Another caregiver that I instantly connected with is also a teacher, Jackie Strack. Her husband's first transplant had been an auto, but was here this time having his second transplant (Allo). The Strack's were right across the hall from us, as well as another couple (I never got their name) who's husband had a transplant a month ago. The good new for them, they both got to go home today. There is now only three patients in the unit. It's kinda of lonely.
I mention these people because as caregivers, I learned that we click very quickly. Its difficult to explain except that only we understand what we are going through caring for our spouses, as they go through their cancer treatment and transplant. We look out for each other, making sure each of us are ok and have someone to talk to as we "have to step out and take a break." I may not have my friends and family here with me, but here in the unit... the nurses, that I talk about have become my friends, and the other caregivers have become like a family to me.
I want to close on something upbeat tonight. Yesterday as Stevan was getting ready to head out for one of his test, our nurses Debbie and Morgan, came in to help him get "suited up" to leave the unit. Stevan was sitting on the bed as we were helping him into his yellow "gown", gloves, shoe covers, head covering, and mask. He goes to stand up.... and his PJ bottoms fall down....
Needless to say, he gasps and bends down to pull them up, as the rest of us bust out laughing. After we all had a good laugh, Debbie admits she shouldn't laugh at him, but then says "it was funny." I must admit though, it felt good to laugh... and Stevan was laughing and smiling too.
We must all count our blessings and laugh even when things are not going as planned. Things will work out for us and even though we have now hit a bump in the road, God is on our side and with his help all will go well.
This morning I told you that we were waiting for the doctors to come in and tell us the result of the bone scan done yesterday. Dr Holter told us that there was something peculiar on his left humours bone (the bone that was broken last year) where the rod was placed in his arm last year. She was sending Infectious Diseases and Orthopedics to come in and talk to Stevan.
One of the Infectious Disease doctors came in and after the exam and scan, they believe he has Osteomyelitis, an infection of the bone. This can occur when there is bacteria somewhere in the body. Since Stevan's immune system had be compromised by the chemotherapy and stem cell transplant, it is possible for this bacteria to go to the area of the titanium rod and grow there.
They are not sure what kind of bacteria it is, so they are wanting to get a bone biopsy of the area infected. In order to do this they want Dr Holter to stop the antibiotics she is giving Stevan so that they can get a biopsy that is not effected by antibiotics. They want him off of antibiotics for at least 48 hours.
First they want to get a MRI of the shoulder and arm. This will give them a better look at what is going on with the bone. That probably wont happen til Monday.
Last night Stevan had some problem with his central line. It was giving the nurse problems when she went to draw his labs. She could flush it, but it wouldn't draw blood. They decided to put a blood thinner in the line to sit and dissolve what ever was blocking the flow. It worked but this morning, blood was leaking around the line site, so they cleaned it and redressed the port area. For some reason it began to leak again and by this afternoon it looked bad. They tried to apply light pressure on the area hoping it would help stop it from seeping. It didn't work.
The unit supervisor, Debbie ordered platelet for Stevan, even though his platelet count is the highest its been. She is in hopes that it would help stop the bleeding by boosting it again. It helped, but its still leaking a bit.
On to the counts for the last few days.
6/6 6/7 6/8
White cells 3.2 2.5 1.8
Red cells 3.01 2.78 2.70
Platelets 22 55 70
His potassium has continued to be around 3.3 which has continued to get him IV potassium each morning. As you can see his white count has continued to drop so he was given a nuepogen shot this afternoon. This lead me to ask the nurse the question "If Stevan's got an infection, why is his white count dropping? It should be going up? Right?" Her answer, "Yes, you would think so." Guess I will have to ask the doctor this in the morning.
I have to end this post by switching topics a bit. We of course have been here a few days longer than expected and obviously more to come. We have met some pretty amazing people in the BMT unit who are going through transplants as well. Most are having Allogeneic (donor cells) transplant. It has given me the opportunity to talk to other caregivers.
I met one gentleman whose wife had an allo transplant using her sisters cells. He was a truck driver and she had been so sick that he took several days off to stay with her. He was so worried about her lack of progress after the transplant. She has had a lot of visitor up here, many her siblings, considering she is one of 12 children in her family. She took a turn for the worse Wednesday night and Thursday morning she was taken to ICU. I don't know her name but please remember her in your prayers. I could see the pain and frustration on her families faces.
Another caregiver that I instantly connected with is also a teacher, Jackie Strack. Her husband's first transplant had been an auto, but was here this time having his second transplant (Allo). The Strack's were right across the hall from us, as well as another couple (I never got their name) who's husband had a transplant a month ago. The good new for them, they both got to go home today. There is now only three patients in the unit. It's kinda of lonely.
I mention these people because as caregivers, I learned that we click very quickly. Its difficult to explain except that only we understand what we are going through caring for our spouses, as they go through their cancer treatment and transplant. We look out for each other, making sure each of us are ok and have someone to talk to as we "have to step out and take a break." I may not have my friends and family here with me, but here in the unit... the nurses, that I talk about have become my friends, and the other caregivers have become like a family to me.
I want to close on something upbeat tonight. Yesterday as Stevan was getting ready to head out for one of his test, our nurses Debbie and Morgan, came in to help him get "suited up" to leave the unit. Stevan was sitting on the bed as we were helping him into his yellow "gown", gloves, shoe covers, head covering, and mask. He goes to stand up.... and his PJ bottoms fall down....
Needless to say, he gasps and bends down to pull them up, as the rest of us bust out laughing. After we all had a good laugh, Debbie admits she shouldn't laugh at him, but then says "it was funny." I must admit though, it felt good to laugh... and Stevan was laughing and smiling too.
We must all count our blessings and laugh even when things are not going as planned. Things will work out for us and even though we have now hit a bump in the road, God is on our side and with his help all will go well.
More Tests Day 15
Yesterday was almost a fever free day. Stevan was on two antibiotic IV meds and now an anti-fungal med as well. Dr Holter was still trying to figure out where the fever was coming from so in order to try and rule things out she ordered a bone scan of his shoulder and full body, as well as a cardiogram to check out his heart. She said that if they all come back clear, they were going to assume there is something wrong with his central line and pull it. They would then replace it with a pick line in his arm.
The highlight of all the tests, he got to get out of the BMT unit for about three hours yesterday. He was a bit excited, since he's been threatening to go past the double doors for about a week now.
One of the interns came by last night and told us that the cardiogram looked good, no concerns. They had yet to get the results of the bone scan back. He wanted to wait to pull the line until he had the results back.
At midnight he ran another fever 100.7 F. Not high enough for them to be alarmed but enough to take note of and watch. By 4:30 am it was back down to 97.3 F.
Stevan has actually been sleeping at night for the last several nights now. Part of that is from the fevers he's been running, and from the medicines they are giving him. I know that God is giving him sleep to keep him strong.
We are waiting this morning for the doctors to show up and tell us any news. As of yesterday morning, we are here til Monday.
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| Stevan waiting for one of his tests. |
The highlight of all the tests, he got to get out of the BMT unit for about three hours yesterday. He was a bit excited, since he's been threatening to go past the double doors for about a week now.
One of the interns came by last night and told us that the cardiogram looked good, no concerns. They had yet to get the results of the bone scan back. He wanted to wait to pull the line until he had the results back.
At midnight he ran another fever 100.7 F. Not high enough for them to be alarmed but enough to take note of and watch. By 4:30 am it was back down to 97.3 F.
Stevan has actually been sleeping at night for the last several nights now. Part of that is from the fevers he's been running, and from the medicines they are giving him. I know that God is giving him sleep to keep him strong.
We are waiting this morning for the doctors to show up and tell us any news. As of yesterday morning, we are here til Monday.
Wednesday, June 6, 2012
Fever and Ice Day +14
Last night I left off with Stevan's fever had dropped to 100.7 F. Around midnight it was back to normal but then back up to 99.5 F around 5am this morning. They began giving him two kinds of antibiotics through his IV as a precaution in case he had an infection somewhere.
Dr. Holter came to visit and she explained that with the high fever he had last night, she could not justify sending him home today or tomorrow. She ordered blood work, urine sample, fecal sample, nasal swab, a chest x-ray, sonogram of his arteries in his neck and arm. She was concerned that the pain from his neck could be caused from his central line. She wanted to make sure there wasn't something messed up or infection in the line. Between all of the tests Stevan tried to sleep. He continued to run a fever around 100 F all morning until about 3pm.
Around 4:30 PM Stevan asked if I would turn the air up (warmer). He was covered up in two blankets and still shivering, so I checked his temp, 101.8 F. I stepped out and told the nurse that his temp had come back up. In about 15 minutes she came in to find him with his head under the covers. His temp, 103.2 F. After she called the doctor she gave him some more Tylenol and then ice packs to put under his arm-pits and groin to try and get his temp down. It has been slowly dropping ever since. As of right now its down to 101 F. He's already been given more antibiotics like last night. His nurse, Diane, will continue to monitor him tonight.
I must admit, today has been the most worried I have been since being up here. I hated to see Stevan so sick and miserable. I really hope the worst is over. I know that God is in control, but to see a loved one in pain, its never easy.
Dr. Holter came to visit and she explained that with the high fever he had last night, she could not justify sending him home today or tomorrow. She ordered blood work, urine sample, fecal sample, nasal swab, a chest x-ray, sonogram of his arteries in his neck and arm. She was concerned that the pain from his neck could be caused from his central line. She wanted to make sure there wasn't something messed up or infection in the line. Between all of the tests Stevan tried to sleep. He continued to run a fever around 100 F all morning until about 3pm.
Around 4:30 PM Stevan asked if I would turn the air up (warmer). He was covered up in two blankets and still shivering, so I checked his temp, 101.8 F. I stepped out and told the nurse that his temp had come back up. In about 15 minutes she came in to find him with his head under the covers. His temp, 103.2 F. After she called the doctor she gave him some more Tylenol and then ice packs to put under his arm-pits and groin to try and get his temp down. It has been slowly dropping ever since. As of right now its down to 101 F. He's already been given more antibiotics like last night. His nurse, Diane, will continue to monitor him tonight.
I must admit, today has been the most worried I have been since being up here. I hated to see Stevan so sick and miserable. I really hope the worst is over. I know that God is in control, but to see a loved one in pain, its never easy.
Tuesday, June 5, 2012
Not Yet Day +13
This post should say Going Home... but not yet. Stevan ran a small temperature last night of 100.2 at 7:30pm, they decided not to let him go home today. Dr. Holter told him as long as he didn't run a temperature he would be able to go home tomorrow. He was obviously upset that he wasn't going to be able to go home, but she explained that they sent someone else in the unit home yesterday and within 4 hours had called, because they were running a fever and were headed back to OKC to admit them again.
Dr. Holter ordered chest x-ray, blood cultures and urine sample to rule out an infection. Stevan slept til about noon and finally got around 1pm to eat some cereal for lunch. Then back to bed around 2pm and slept til 5pm. They gave him a shot of Nuelasta again, to try and boost his white cells. This will help him fight any infections or colds he runs into. He got up and did his walk of 20 minutes and showered for the night. I scratched and rubbed his head, which is still releasing his stubby hairs. I noticed then that his head was a bit warm.
So going home tomorrow? Well, that's not going to happen either. He is currently running 102.2 temp. They just gave him some Tylenol, Ativan and Flexeril (for his muscle cramps in the back of his neck that started last night. He still didn't sleep well last night. Partially from the pain in his neck.) Tonight they are going to start him on IV antibiotics as a precaution. As a result they will keep him for at least another two days. I would rather him be here as long as something could be wrong. I don't want to have to drive home, just to turn around and bring him back.
It will all work out. We got a text last night from Lena, Stevan's ex, letting us know that she and Dustin both have a sinus infection and he has just developed a sore throat. I mentioned this to the doctor this morning and she was very clear that Dustin had to be on antibiotics for at least 48 hours before Stevan can have contact with him. I called Lena to let her know this. She wanted to tell me that they were taking NyQuil and it was helping. I told her that would not do it, Dustin had to be on antibiotics in order for Stevan to be around him. She tried to argue with me, but I continued to tell her this is what the doctor said and she apparently didn't understand the severity of Stevan's condition. She continued to try and argue with me. I guess I finally got through to her since she texted Stevan this afternoon to let us know that Dustin had an appointment tomorrow. The plans are to pick up the kids on Friday afternoon. Hopefully we will be out of here by then. We can only pray!
As I finish this up, his fever has dropped to 100.7 Praise God! Now if it will stay down.
So going home tomorrow? Well, that's not going to happen either. He is currently running 102.2 temp. They just gave him some Tylenol, Ativan and Flexeril (for his muscle cramps in the back of his neck that started last night. He still didn't sleep well last night. Partially from the pain in his neck.) Tonight they are going to start him on IV antibiotics as a precaution. As a result they will keep him for at least another two days. I would rather him be here as long as something could be wrong. I don't want to have to drive home, just to turn around and bring him back.
It will all work out. We got a text last night from Lena, Stevan's ex, letting us know that she and Dustin both have a sinus infection and he has just developed a sore throat. I mentioned this to the doctor this morning and she was very clear that Dustin had to be on antibiotics for at least 48 hours before Stevan can have contact with him. I called Lena to let her know this. She wanted to tell me that they were taking NyQuil and it was helping. I told her that would not do it, Dustin had to be on antibiotics in order for Stevan to be around him. She tried to argue with me, but I continued to tell her this is what the doctor said and she apparently didn't understand the severity of Stevan's condition. She continued to try and argue with me. I guess I finally got through to her since she texted Stevan this afternoon to let us know that Dustin had an appointment tomorrow. The plans are to pick up the kids on Friday afternoon. Hopefully we will be out of here by then. We can only pray!
As I finish this up, his fever has dropped to 100.7 Praise God! Now if it will stay down.
Monday, June 4, 2012
Good News Day +11 and 12
Yesterday went fairly smoothly. Stevan did have a bit of nausea in the evening and couldn't eat his steak burritos he had requested from Taco Bell. He did enjoy his chocolate shake from Sonic though. Considering he hadn't taken any thing for nausea in the last couple of days, I'd say that's not bad.
He still didn't sleep Saturday night, so last night they gave him Vistaril around 9pm then a shot of Adivan in his IV line, along with all of the prayers I know that was sent up for him yesterday that has finally done the trick. He slept. Dr. Holter put in an order for the nurses to watch his oxygen level over night as he was sleeping. He's had some problems with his oxygen level over the last two weeks and last night they saw them dipping to 88% at times and then back up to 95%. They believe he has sleep apnea.
Three years ago when he had his appendix taken out, the recover nurse told me that he would stop breathing at times. She told me then that she suspected that he had sleep apnea and it should get checked out. Well he doesn't admit it and would never go, but now Dr. Holter has ordered a sleep study to be done. She says that this will make him feel better once they get him diagnosed and treated for it.
Finally on to the great news. He is getting released to go home tomorrow. His body is making white cells and platelets. Since his platelets are below 50 he will probably get a bag of platelets again tomorrow before he leaves. His potassium continues to be low too, so he got another bag of it along with 4 big potassium pills...he calls horse pills, this morning.
Counts for 6/3 6/4
White Cells .6 .9
Red Cells 2.86 2.77
Hemoglobin 8.8 8.4
Platelets 23 24
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| All suited up to walk the hall, his daily exercise. |
He still didn't sleep Saturday night, so last night they gave him Vistaril around 9pm then a shot of Adivan in his IV line, along with all of the prayers I know that was sent up for him yesterday that has finally done the trick. He slept. Dr. Holter put in an order for the nurses to watch his oxygen level over night as he was sleeping. He's had some problems with his oxygen level over the last two weeks and last night they saw them dipping to 88% at times and then back up to 95%. They believe he has sleep apnea.
Three years ago when he had his appendix taken out, the recover nurse told me that he would stop breathing at times. She told me then that she suspected that he had sleep apnea and it should get checked out. Well he doesn't admit it and would never go, but now Dr. Holter has ordered a sleep study to be done. She says that this will make him feel better once they get him diagnosed and treated for it.
Finally on to the great news. He is getting released to go home tomorrow. His body is making white cells and platelets. Since his platelets are below 50 he will probably get a bag of platelets again tomorrow before he leaves. His potassium continues to be low too, so he got another bag of it along with 4 big potassium pills...he calls horse pills, this morning.
Counts for 6/3 6/4
White Cells .6 .9
Red Cells 2.86 2.77
Hemoglobin 8.8 8.4
Platelets 23 24
Saturday, June 2, 2012
Light At The End Of The Tunnel Day +10
I won't say Stevan has had an easy go at his stem cell transplant but considering all that could have happened, he's done pretty well. He's had some nausea, which we got under control pretty quick. His sense of smell and taste has been distorted to the point nothing smells or taste good, but he has managed to eat something each day.
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| This is before the head shaving. |
The worse part of this whole experience has probably been the pain in his ribs on the right side due to the Nuelasta shot, which helped boost his white counts. His constant diarrhea has been another pain in the butt, pun totally intended. He's had it since day 6, which has inflamed his hemorrhoids. For the last three nights, he has struggled to sleep well, which has got him almost delirious to the point he's dozing off and on, talking in his sleep, dreaming crazy dreams and then waking up. It is not a restful sleep. Last night they gave him Vistaril, but it did nothing.
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| Halfway through the shaving. |
Yesterday he discovered some of his hairs were falling out. Before he took a shower last night he decided to go ahead and shave his head and face, so that it wouldn't be falling out into his food and in the bed. He gave me the privilege of shaving his head. We tried to have a little fun with it, as you can tell with the pictures I took.
We have had high hopes that we would be home by June 8, next Friday. This morning, Dr. Holter told us that his counts were coming up on their own fairly fast and she was looking at sending him home by Tuesday!
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| And its all gone. |
Red Cells 2.85
Hemoglobin 8.7
Platelets 36
His potassium has been so low, probably due to his diarrhea, that they gave him 80 mEq last night and then again today.
Stevan ask for continued prayers for him, primarily for his sleep. He's exhausted from lack of sleep.
Friday, June 1, 2012
Platelet Infusion Day 8 and 9
Sorry I missed yesterdays post, but this one is coming earlier in the day. Stevan had a pretty good day yesterday. He had some trouble sleeping on Wednesday night, the first since he's been here at the hospital. When Dr. Holter came in yesterday, she said that she give him Ambien (5mg) last night to help him sleep. Well... it didn't work. He took it at 9pm and at midnight he was still wide awake. This morning Dr. Holter told him she would give him something else tonight that might work better.
Yesterday they decided to flush out one of his ports on his central line. They had been having trouble drawing blood from it. Later yesterday afternoon it seemed to be leaking blood from the skin, pooling under the sterile clear bandage over where his line was placed. Yesterday while he was fitfully sleeping off and on, he was constantly playing with his IV lines and pulling on it. We thought maybe this was the cause of this. They came in and change it around 10:30 PM.
Here is his numbers from the last two days.
5/31 6/1
White Cells 0.1 .2
Red Cells 3.18 3.04
Hemoglobin 9.6 9.4
Platelets 21 8
Since his platelets dropped below 10, he received a bag of platelets this morning. They decided that the low platelets was the reason his bandage was leaking blood. When there is low platelets, it doesn't allow his blood to clot properly. The nurse came back in later this morning to tell us that his platelets went up to 32. She said that its normal for patients to receive a bag of platelets every other day or so. If he begins to run a fever, over 100 it will "burn up" his platelets, dropping his count again. For the third morning in a row he received potassium this morning as well.
Stevan's line bandage was changed yet again around noon for the third time in three days. Since last night it had leaked more blood around the line under the bandage. So now it is very tender from the nurses pulling the tape off of his chest. Hopefully he wont need it changed again until next Wednesday, the day they always change central line bandages.
Dr. Holter told us this morning she could see us coming home in the middle of next week, if all continues to go well. The only problems Stevan is having is being able to sleep. We hope the new medicine he gets tonight will do the trick. Thank you for following us on this journey. We appreciate your thoughts and prayers.
Yesterday they decided to flush out one of his ports on his central line. They had been having trouble drawing blood from it. Later yesterday afternoon it seemed to be leaking blood from the skin, pooling under the sterile clear bandage over where his line was placed. Yesterday while he was fitfully sleeping off and on, he was constantly playing with his IV lines and pulling on it. We thought maybe this was the cause of this. They came in and change it around 10:30 PM.
Here is his numbers from the last two days.
5/31 6/1
White Cells 0.1 .2
Red Cells 3.18 3.04
Hemoglobin 9.6 9.4
Platelets 21 8
Since his platelets dropped below 10, he received a bag of platelets this morning. They decided that the low platelets was the reason his bandage was leaking blood. When there is low platelets, it doesn't allow his blood to clot properly. The nurse came back in later this morning to tell us that his platelets went up to 32. She said that its normal for patients to receive a bag of platelets every other day or so. If he begins to run a fever, over 100 it will "burn up" his platelets, dropping his count again. For the third morning in a row he received potassium this morning as well.
Stevan's line bandage was changed yet again around noon for the third time in three days. Since last night it had leaked more blood around the line under the bandage. So now it is very tender from the nurses pulling the tape off of his chest. Hopefully he wont need it changed again until next Wednesday, the day they always change central line bandages.
Dr. Holter told us this morning she could see us coming home in the middle of next week, if all continues to go well. The only problems Stevan is having is being able to sleep. We hope the new medicine he gets tonight will do the trick. Thank you for following us on this journey. We appreciate your thoughts and prayers.
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