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.
Us before Myeloma
Celebrating our 5 year Anniversary a few days early. Wow! We've both changed over the past few years.
Friday, June 8, 2012
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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