So today we hit a big milestone. Okay, it really wasn't that big, but because we have gone awhile without any good news, it felt like a HUGE milestone. It looks like Chris is starting to grow white blood cells.
Chris's count were:
White Blood Cell: 0.1 ...Now you might be saying to yourself, "Hasn't this always been Chris' WBC count?" Well just like they don't count platelets less than 10, they don't count WBC under 0.1. For the last week Chris has actually had less than 0.1, but today he officially is 0.1. It still means he has no immune system, but it does signify that he is starting to get better!
Platelets: 16
Hemoglobin: 76
Neutrophils: 0.0
Since Chris' hemoglobin was so low, he got a blood transfusion today. They also ended giving him a platelet transfusion. While they normally only give platelets if you are under 10 (or under 15 with a fever) Chris was getting some pretty bad bruises, a bad nose bleed and they ended doing a little procedure on him today(details below), so they gave it to him to help with his clotting.
We had a lot of changes today. First, Chris' pain medication was changed for the 5th time. He is now on hydromorphone again. The pain killer that he was on before was not lasting long enough, so they switched him over and he seems a lot happier with it.
I also went home for a little bit because a) Chris seemed to be doing a bit better today (I mean, he did have 0.1 WBC) and b) I was absolutely exhausted and in need of a shower. I normally go home for an hour each night to shower and do laundry, but since Chris had a pretty high fever last night and pretty out of it, I decided to stay.
I left around 1:00 and was back at 4:00, and the first thing his nurse said to me when I walked in the door was "so we had a bunch of changes while you were gone." This is not the most comforting phrase to hear. However, it was nothing too bad. While I was gone they did minor surgery on Chris. And by minor, I mean they did it in his room, so it was very undramatic. They decided to try and drain his abscess a bit to give him some pain relief. Originally they were very hesitant to do this because of how low his WBC was. The rationale was that Chris has an infection and if they do the procedure with his WBC low the worst thing he can get is another infection. He did end up bleeding a ton (which was the reason he got the platelets) but they had it under control by the time I returned.
He also ended up getting a catheter . Since he was still going to the washroom so frequently and experiencing pretty uncomfortable bladder spasms (apparently common with transplant patients), they gave him one. I have never seen him sleep better. He is snoring for the first time since we came to the hospital.
Now today has not all been good news. Chris had a really rough night last night with his high fever and although it broke today, he has another high fever again. They switched up his antibiotics yesterday, so hopefully they will be able to kick in soon and fight this infection he has.
He also has noticed a change in his appetite. While he is still eating at every meal, he is having noticeably smaller portions and feels a bit nauseous when he eats too quickly. This is still great compared to what other transplant patients have experienced, but I really thought Chris was going to be the first patient here to gain weight by the end of this.
Tuesday, December 21, 2010
Monday, December 20, 2010
Day +7 (post-transplant)
I remember when we first started this blog we had some days when we would search for things to talk about. Now I find I am overwhelmed with all of the things to report.
First off here are Chris' counts:
White Blood Cell: 0.1
Platelets: 11
Hemoglobin: 90
Neutrophils: 0.0
Not much of a change.
So what happened today?
Chris had an MRI and had a consult with a doctor from General Surgery to discuss the possibility of them removing his abscess. Long story short, they found the problem and they can't do anything about it until his white cells are up. It was not good news because we were really hoping that Chris could get rid of it today.
Since his platelets were back down to being low (normal for these counts to go up and down), he had another platelet transfusion. We figured that this number was going to be down because Chris was bruising so easily when they were giving him needles last night. While he looks like he has been in a bad fight with all of these bruises, they don't hurt him at all and I am sort of use to seeing him like this.
Chris had an infusion of intravenous immunoglobulin (IVIG) to help boost his immune system. It is a blood product that is made up from plasma of at least 1000 blood donors (pretty neat). He will get this once a month for the first little while to help build his immune system.
And then because today was not interesting enough, Chris got a really bad fever (39 C) . He broke it within a few hours, but since he is continuing to grow bacteria in his blood cultures, the ydecided that his PICC line may be what was infected. This happens commonly with transplant patients and the insertion site was pretty red and a little warm. They removed his PICC line tonight and inserted a IV line for him to receive his drugs. Watching a PICC line be removed is definetly interesting as they pull a 2 foot blue tube from his arm like its nothing. The PICC line will need to be out for at least 24 hours and then they will insert it again. They really prefer to give drugs by PICC line because all of these drugs are tough on the veins. o
All of this excitement definetly tuckered Chris out and he is fast asleep. I think I will join him.
First off here are Chris' counts:
White Blood Cell: 0.1
Platelets: 11
Hemoglobin: 90
Neutrophils: 0.0
Not much of a change.
So what happened today?
Chris had an MRI and had a consult with a doctor from General Surgery to discuss the possibility of them removing his abscess. Long story short, they found the problem and they can't do anything about it until his white cells are up. It was not good news because we were really hoping that Chris could get rid of it today.
Since his platelets were back down to being low (normal for these counts to go up and down), he had another platelet transfusion. We figured that this number was going to be down because Chris was bruising so easily when they were giving him needles last night. While he looks like he has been in a bad fight with all of these bruises, they don't hurt him at all and I am sort of use to seeing him like this.
Chris had an infusion of intravenous immunoglobulin (IVIG) to help boost his immune system. It is a blood product that is made up from plasma of at least 1000 blood donors (pretty neat). He will get this once a month for the first little while to help build his immune system.
And then because today was not interesting enough, Chris got a really bad fever (39 C) . He broke it within a few hours, but since he is continuing to grow bacteria in his blood cultures, the ydecided that his PICC line may be what was infected. This happens commonly with transplant patients and the insertion site was pretty red and a little warm. They removed his PICC line tonight and inserted a IV line for him to receive his drugs. Watching a PICC line be removed is definetly interesting as they pull a 2 foot blue tube from his arm like its nothing. The PICC line will need to be out for at least 24 hours and then they will insert it again. They really prefer to give drugs by PICC line because all of these drugs are tough on the veins. o
All of this excitement definetly tuckered Chris out and he is fast asleep. I think I will join him.
Sunday, December 19, 2010
Day +6 (post-transplant)
I have determined that this blog now serves another purpose. In addition to keeping family members and friends informed and providing help to other people with MS who are considering this procedure, it will also be a lot of help at letting Chris know exactly what happened during this process. After the last few days I have decided that Chris will remember very little of this part of the procedure (probably a good thing) due to high fevers, high amounts of pain medication and just a lot of drugs overall.
Last night was definitely the roughest night ( you may sense this from my last post). We learned that Chris does not do well with morphine. While it did wonders for his pain, with all of the morphine building up throughout the night, he was really freaking out at night. They took him off the pain killer and gave him a drug to calm him down. He ended up having a bad reaction to this drug and in addition to the morphine, he became extremely anxious and disoriented When I came back from getting dinner he was extremely angry and convinced that his IV pump was broken (at this point he wasn't even hooked up to it). They gave him a bunch of sedatives and asked me to leave the room while they calmed him down. By 4:00 am I was able to come back in his room and he was a lot better.
They continued to give him anti-anxiety medication throughout the day until the morphine is out his system. They have switched him to Fentanyl, which is short lasting. The benefit of this drug is that it will not stay in his system long and therefore he is less likely to get the negative side effects from it.
Today was a much quieter day. Chris got to have a shower, which really made him feel a lot better. It probably didn't hurt that he had me and two other nurses helping him out since he was pretty drugged up.
His counts stayed relatively the same:
WBC: 0.1
Hemoglobin: 87
Platelets: 18 (this meant that he did not need to have a platelet infusion today)
Neutrophils: 0.0
I am really hoping for a bone marrow transplant miracle and that all of sudden Chris is going to wake up with a higher WBC and Neutrophil count. Usually the earliest this can happen is Day +10, but since he was so good at growing stem cells with the neupogen last time (see stem cell collection portion of the blog), I just want the same to hold true this time around. We could use some good news and Chris seems to do everything differently.
Coming into this we were told all about the bad side effects of the chemo. Chris really hasn't had any of them, but has invented his own set of symptoms. We were warned about loss of appetite, nausea, extreme fatigue, diarrhea and mucocitis (sores all over your mouth and throat).Other than the infection and fever, Chris has really not been affected by any of the regular symptoms (knock on wood!!), but he has bad pain, anxiety and has trouble sleeping. He really likes to do things his own way, so I just keep hoping that this own way involves an impressive recovery that brings him back to his regular self in time for Christmas. The hardest part for me during this part of the procedure is not being able to talk to" non-drugged-out Chris". I really miss him.
Finally, I would just like to thank our amazing friends that shovelled our driveway today. It was amazing to come home tonight to have one thing taken off my plate. I told Chris and he thought it was pretty cool too.
Last night was definitely the roughest night ( you may sense this from my last post). We learned that Chris does not do well with morphine. While it did wonders for his pain, with all of the morphine building up throughout the night, he was really freaking out at night. They took him off the pain killer and gave him a drug to calm him down. He ended up having a bad reaction to this drug and in addition to the morphine, he became extremely anxious and disoriented When I came back from getting dinner he was extremely angry and convinced that his IV pump was broken (at this point he wasn't even hooked up to it). They gave him a bunch of sedatives and asked me to leave the room while they calmed him down. By 4:00 am I was able to come back in his room and he was a lot better.
They continued to give him anti-anxiety medication throughout the day until the morphine is out his system. They have switched him to Fentanyl, which is short lasting. The benefit of this drug is that it will not stay in his system long and therefore he is less likely to get the negative side effects from it.
Today was a much quieter day. Chris got to have a shower, which really made him feel a lot better. It probably didn't hurt that he had me and two other nurses helping him out since he was pretty drugged up.
His counts stayed relatively the same:
WBC: 0.1
Hemoglobin: 87
Platelets: 18 (this meant that he did not need to have a platelet infusion today)
Neutrophils: 0.0
I am really hoping for a bone marrow transplant miracle and that all of sudden Chris is going to wake up with a higher WBC and Neutrophil count. Usually the earliest this can happen is Day +10, but since he was so good at growing stem cells with the neupogen last time (see stem cell collection portion of the blog), I just want the same to hold true this time around. We could use some good news and Chris seems to do everything differently.
Coming into this we were told all about the bad side effects of the chemo. Chris really hasn't had any of them, but has invented his own set of symptoms. We were warned about loss of appetite, nausea, extreme fatigue, diarrhea and mucocitis (sores all over your mouth and throat).Other than the infection and fever, Chris has really not been affected by any of the regular symptoms (knock on wood!!), but he has bad pain, anxiety and has trouble sleeping. He really likes to do things his own way, so I just keep hoping that this own way involves an impressive recovery that brings him back to his regular self in time for Christmas. The hardest part for me during this part of the procedure is not being able to talk to" non-drugged-out Chris". I really miss him.
Finally, I would just like to thank our amazing friends that shovelled our driveway today. It was amazing to come home tonight to have one thing taken off my plate. I told Chris and he thought it was pretty cool too.
Saturday, December 18, 2010
Day +5 (post-transplant)
Today started off pretty well, but ended pretty bad.
Chris is still okay in terms of his health. His fever broke today, and he still is able to eat and drink without pain. His counts are the same as yesterday. Although I would like to correct myself and point out that his hemoglobin is 96, not 46. My mom (a nurse) pointed out that he would be in a lot of trouble if his hemoglobin was 46. He received a platelet transfusion and neupogen again today. We are alsoe still waiting for him to have an MRI.
However, he had a really bad reaction to the morphine that they switched him to and to another medication that he had today to help him sleep. Combined the drugs made him feel really confused, anxious, paranoid and angry. To try and calm him down they moved me into another room and have given him some sedatives and some anti-anxiety medications.
It's been a long night, so that's all I have to post for today. Hopefully tomorrow will have less hurdles.
Chris is still okay in terms of his health. His fever broke today, and he still is able to eat and drink without pain. His counts are the same as yesterday. Although I would like to correct myself and point out that his hemoglobin is 96, not 46. My mom (a nurse) pointed out that he would be in a lot of trouble if his hemoglobin was 46. He received a platelet transfusion and neupogen again today. We are alsoe still waiting for him to have an MRI.
However, he had a really bad reaction to the morphine that they switched him to and to another medication that he had today to help him sleep. Combined the drugs made him feel really confused, anxious, paranoid and angry. To try and calm him down they moved me into another room and have given him some sedatives and some anti-anxiety medications.
It's been a long night, so that's all I have to post for today. Hopefully tomorrow will have less hurdles.
Friday, December 17, 2010
Day +4 (post-transplant)
I am pretty exhausted right now, so I won't be posting too much tonight. I will try and post earlier tomorrow to catch everyone up on Chris' progress.
Chris counts now are:
White Blood Cell: 0.1
Hemoglobin: 46
Platelets: less than 10 (apparently they stop counting after 10)
Neutophils: 0.0
Since his platelets are so low they gave him a platelet transfusion today. You could really see the difference as Chris is covered in bruises right now (I swear none of them are from me) and he is getting nose bleeds.
He also had a CT scan today to see if they could find out what is causing all of pain. The CT scan was clear, but they said it is very hard to see things unless they are really big on a CT scan, so they are going to do an MRI tomorrow. There isn't really a rush because there is not much they can do for Chris regardlress of what he has. Since his platelets are so low and white blood cells are so low, it would be far to risk for them to actually do anything for him internally.
They also determined his infection based on his blood cultures today. He has pseudomonas aerugionsa, which is a bacteria that they say is fairly common with transplant patients. They started an additional antibiotics this afternoon to treat it, and Chris' fever has been lower ever since (approximately 38.2 C)
The main issue of the day was dealing with Chris' pain medication. He is in a lot pain, but the pain medications are making him really loopy. They are trying to find a good compromise between Chris' comfort level and mental level. I think a lot of his loopiness can be attributed to two nights of very limited sleep. He needed to go the washroom every ten minutes last night. So two nights of no sleep, in the same week where he had four nights in a row of getting up every hour. I am feeling pretty loopy myself and I am not on any pain medications.
I REALLY hoping for a good night's sleep tonight. I am a strong believer that the more sleep you get, the better you feel and Chris really needs to start feeling better.
Chris counts now are:
White Blood Cell: 0.1
Hemoglobin: 46
Platelets: less than 10 (apparently they stop counting after 10)
Neutophils: 0.0
Since his platelets are so low they gave him a platelet transfusion today. You could really see the difference as Chris is covered in bruises right now (I swear none of them are from me) and he is getting nose bleeds.
He also had a CT scan today to see if they could find out what is causing all of pain. The CT scan was clear, but they said it is very hard to see things unless they are really big on a CT scan, so they are going to do an MRI tomorrow. There isn't really a rush because there is not much they can do for Chris regardlress of what he has. Since his platelets are so low and white blood cells are so low, it would be far to risk for them to actually do anything for him internally.
They also determined his infection based on his blood cultures today. He has pseudomonas aerugionsa, which is a bacteria that they say is fairly common with transplant patients. They started an additional antibiotics this afternoon to treat it, and Chris' fever has been lower ever since (approximately 38.2 C)
The main issue of the day was dealing with Chris' pain medication. He is in a lot pain, but the pain medications are making him really loopy. They are trying to find a good compromise between Chris' comfort level and mental level. I think a lot of his loopiness can be attributed to two nights of very limited sleep. He needed to go the washroom every ten minutes last night. So two nights of no sleep, in the same week where he had four nights in a row of getting up every hour. I am feeling pretty loopy myself and I am not on any pain medications.
I REALLY hoping for a good night's sleep tonight. I am a strong believer that the more sleep you get, the better you feel and Chris really needs to start feeling better.
Thursday, December 16, 2010
Day +3 (post-transplant)
Chris still isn't doing very well today. They have him on a lot of antibiotics and a lot of hydration to fight the fever. The downside to all of the hydration is that it made Chris go the washroom every 15 to 20 minutes last night and most of today. It's a bad night when you miss it when Chris only had to go to the washroom every hour (oh the good ol' days).
His counts right now are:
White Blood Cell - 0.1
Hemoglobin - 104
Platelets - 22
Absolute neutophil count:- 0.0 (I was told they use this count to determine when Chris can be discharged)
We have started to receive his counts now daily, so I will try and remember to include them in the blog so you can see his improvements. We also found out that Chris' blood cultures from Tuesday came back and he is growing a bacteria, so we now know he has an infection, but they still need to determine which one. Once they do they will be better able to treat it by picking a more specific antibiotic. I had Chris' doctor reassure me several times that this happens to everyone on the transpant, and that an infection is not anything to be alarmed about.
Chris has maintained his fever for the most part of the day (38.8 C), and has been really bothered by the pain. They aren't 100 per cent what is causing it, but a "pain expert" ( I don't think that was his exact title) came and saw Chris today and he thinks that Chris may have an abscess along his GI tract. He has been on pain medication all day, and they are hooking him up to a machine that will let him self-administer pain medication. When it starts to get bad, he can up his dosage (but, don't worry they have a limit so that you can't overdose). Due to all of these drugs, Chris has been really out of it today. I think he has been a lot of entertainment to some of the nurses that come and check in on him. They will ask him how he is feeling, and he will respond with " I don't remember your name", or "I was admitted yesterday." If you have ever seen the video "David After Dentist" on YouTube (if you haven't, google it now!), that is a little how it is like . However, every once in awhile Chris will all of a sudden wake up from a nap and seem completely normal, which is very comforting to see.
He also has a bunch of rashes and bruises all over him. He is receiving daily neupogen shots to boost his stem cells and they are causing some major bruises on his stomach. But just like a lot of the symptoms that Chris has been having, they look a lot worse that they appear.
The good news is that Chris still has an appetite. He sent me down to get him cookies from Tim Hortons today and ate all three of his meals. He also is in relatively good spirits and still always asks me how the blog is doing and reminds me constantly to update it. I keep on asking him if he is feeling any pain,and he responds, "Have you updated the blog yet?" At least he has his priorties straight.
His counts right now are:
White Blood Cell - 0.1
Hemoglobin - 104
Platelets - 22
Absolute neutophil count:- 0.0 (I was told they use this count to determine when Chris can be discharged)
We have started to receive his counts now daily, so I will try and remember to include them in the blog so you can see his improvements. We also found out that Chris' blood cultures from Tuesday came back and he is growing a bacteria, so we now know he has an infection, but they still need to determine which one. Once they do they will be better able to treat it by picking a more specific antibiotic. I had Chris' doctor reassure me several times that this happens to everyone on the transpant, and that an infection is not anything to be alarmed about.
Chris has maintained his fever for the most part of the day (38.8 C), and has been really bothered by the pain. They aren't 100 per cent what is causing it, but a "pain expert" ( I don't think that was his exact title) came and saw Chris today and he thinks that Chris may have an abscess along his GI tract. He has been on pain medication all day, and they are hooking him up to a machine that will let him self-administer pain medication. When it starts to get bad, he can up his dosage (but, don't worry they have a limit so that you can't overdose). Due to all of these drugs, Chris has been really out of it today. I think he has been a lot of entertainment to some of the nurses that come and check in on him. They will ask him how he is feeling, and he will respond with " I don't remember your name", or "I was admitted yesterday." If you have ever seen the video "David After Dentist" on YouTube (if you haven't, google it now!), that is a little how it is like . However, every once in awhile Chris will all of a sudden wake up from a nap and seem completely normal, which is very comforting to see.
He also has a bunch of rashes and bruises all over him. He is receiving daily neupogen shots to boost his stem cells and they are causing some major bruises on his stomach. But just like a lot of the symptoms that Chris has been having, they look a lot worse that they appear.
The good news is that Chris still has an appetite. He sent me down to get him cookies from Tim Hortons today and ate all three of his meals. He also is in relatively good spirits and still always asks me how the blog is doing and reminds me constantly to update it. I keep on asking him if he is feeling any pain,and he responds, "Have you updated the blog yet?" At least he has his priorties straight.
Wednesday, December 15, 2010
Day +2 (post-transplant)
Remember how happy we were to be home?
Well that lasted two days.
Unfortunately, Chris was admitted today and will need to stay in the hospital until his blood counts stabilize. According to Chris' doctors that will take at least 12 to 14 days, so we here for the long haul (and Christmas)
We definetly had mixed emotions with Chris getting admitted. On one hand, Chris was in a lot of pain when he was admitted and hospital are great for getting rid of that. But getting admitted for two weeks? That was not what we had planned.
It all started a few days when Chris started having pain when he went to the washroom. Chris' doctors were not that concerned and prescribed him some pain killers. Two days later we were out of pain killers and Chris was having a hard time moving around the house and had developed different rashes all over his body. When we arrived at his appointment today he had a slight fever, which automatically means he needed to be admitted. They gave him antibiotics, but three hours later his fever had actually risen considerably.
After that, the nurses gave him a bunch of drugs, ran a bunch of tests and he will likely have a CT scan tomorrow to make sure everything is okay. It was a lot of things happening all at once so unfortunately I need to be vague as to what they actually did. They did warn Chris not to scratch any of his rashes, because he is very prone to getting a staph infection (which I just googled to find out what it was, and does not sound fun!).
It was a little scary at first. They had Chris on so many drugs, especailly pain killers that he was really out of it. When I left to go home to get him his overnight things, I was freaking out a little. An hour after I was home Chris gave me a call from the hospital. He had completely forgot me leaving his room and any of the conversations we had, but he was feeling a lot better and was back to his regular self.
I am back at the hospital with Chris now and he was feeling well enough to watch television in the family lounge (although I think he has fallen asleep on the couch next to me). He also ate a full meal for dinner and asked me if I could bring him ice cream next time I go out (a sure sign that he is feeling better)
Well that lasted two days.
Unfortunately, Chris was admitted today and will need to stay in the hospital until his blood counts stabilize. According to Chris' doctors that will take at least 12 to 14 days, so we here for the long haul (and Christmas)
We definetly had mixed emotions with Chris getting admitted. On one hand, Chris was in a lot of pain when he was admitted and hospital are great for getting rid of that. But getting admitted for two weeks? That was not what we had planned.
It all started a few days when Chris started having pain when he went to the washroom. Chris' doctors were not that concerned and prescribed him some pain killers. Two days later we were out of pain killers and Chris was having a hard time moving around the house and had developed different rashes all over his body. When we arrived at his appointment today he had a slight fever, which automatically means he needed to be admitted. They gave him antibiotics, but three hours later his fever had actually risen considerably.
After that, the nurses gave him a bunch of drugs, ran a bunch of tests and he will likely have a CT scan tomorrow to make sure everything is okay. It was a lot of things happening all at once so unfortunately I need to be vague as to what they actually did. They did warn Chris not to scratch any of his rashes, because he is very prone to getting a staph infection (which I just googled to find out what it was, and does not sound fun!).
It was a little scary at first. They had Chris on so many drugs, especailly pain killers that he was really out of it. When I left to go home to get him his overnight things, I was freaking out a little. An hour after I was home Chris gave me a call from the hospital. He had completely forgot me leaving his room and any of the conversations we had, but he was feeling a lot better and was back to his regular self.
I am back at the hospital with Chris now and he was feeling well enough to watch television in the family lounge (although I think he has fallen asleep on the couch next to me). He also ate a full meal for dinner and asked me if I could bring him ice cream next time I go out (a sure sign that he is feeling better)
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