"Just the Facts"-- Wow, way less pain, flushing halted, catheter came out tonight, and took first walk in 4 days.
All I can say is there is amazing power in prayer! So much happened today for B it is just wonderful. The doctors came by and said he was doing good. They first halted the flushing liquid, but kept it hooked up. They wanted to see how the output would go if they stopped. After monitoring that for several hours, they then detached those tubes and removed those bags. But he still had the catheter and the output bag attached. Then around 6pm they removed the catheter, and freedom, finally. He is still hooked up to his IV pole and several tubes from bags there, but he has about a 4 to 5 foot leash from that pole. It was only about 3 feet with the other and maneuverability was very limited. He was able to take a walk and felt really good, although there were too many people on the floor then, so we only did 2 laps. Then we settled in to watch TV and "The Bucket List" was on, and we laugh as some of the very familiar scenes, some I witnessed just a few minutes earlier.
The other great news was that B's neighbor a women who had her transplant about 15 hours after B, was finally released today and I got to see them leave. Believe me, it's a big deal when someone gets to leave the BMT floor. This was her first time outside her room in 6 weeks. She didn't have an easy go of it, and I had spoken with her husband several times as we exchanged notes. It was pure joy for me to be able to see this sweet couple, who had been through so much, walk out those double doors. I was doubly blessed. We are not holding our breath, but we think there may be a possibility that B will come home tomorrow. This turnaround is wonderful and I attribute it to all the prayers that so many have lifted up on our account. I can't thank you all enough. We have a big powerful God, but He desires us, and our hearts, that's all, pretty amazing, huh.
Until next time,
Hopeful Believer.
Friday, March 4, 2011
Thursday, March 3, 2011
Mar 3, Day +34 Itching to get out
"Just the Facts"-- More blood and more platelets, still dealing with the virus, but symptoms reducing. Still dealing with pain. Too tied up to walk.
This week has been so complicated and busy, that I haven't done what I usually do and that is to research what is going on with B. Well a few things are unanswered for me, so research is what I have done. This virus that B has was passed on by his donor. Something that was not tested for, and the scientist think that about 80% of us carry some form of this virus in our systems. It only presents when a person is immuonosuppressed, which of course B is. They go so far as to list the main drug B is on. So now that it is being reduced I understand some of the treatment logic. This particular virus is passed on from person to person either by blood or urine. It ends up residing in the kidney or bladder. They symptoms B has is hemorrhagic cystitis. This explains the blood and the clotting. Well so much for the science lesson. B seems to be passing less and less blood and clots, so these are good signs as it means the pain is less frequent, still the same intensity, but not as often. He would like to walk the halls, but cannot manage both poles and all the tubes. He is in a gown now as it is much easier to handle the tubes. This is a common side effect for BMT patients as I have said and the doctors are not overly concerned, but watching how he progresses carefully.
The prayer request would be for the reduction in meds to help his own immunity system work enough to help combat the virus without impairing the graft. Tricky business but not impossible. That he would heal enough to be release and able to come home soon before he loses too much muscle strength. I am blessed that I can put out this request for prayer and know the faithful will there. Bless you.
Until next time,
Hopeful Believer
This week has been so complicated and busy, that I haven't done what I usually do and that is to research what is going on with B. Well a few things are unanswered for me, so research is what I have done. This virus that B has was passed on by his donor. Something that was not tested for, and the scientist think that about 80% of us carry some form of this virus in our systems. It only presents when a person is immuonosuppressed, which of course B is. They go so far as to list the main drug B is on. So now that it is being reduced I understand some of the treatment logic. This particular virus is passed on from person to person either by blood or urine. It ends up residing in the kidney or bladder. They symptoms B has is hemorrhagic cystitis. This explains the blood and the clotting. Well so much for the science lesson. B seems to be passing less and less blood and clots, so these are good signs as it means the pain is less frequent, still the same intensity, but not as often. He would like to walk the halls, but cannot manage both poles and all the tubes. He is in a gown now as it is much easier to handle the tubes. This is a common side effect for BMT patients as I have said and the doctors are not overly concerned, but watching how he progresses carefully.
The prayer request would be for the reduction in meds to help his own immunity system work enough to help combat the virus without impairing the graft. Tricky business but not impossible. That he would heal enough to be release and able to come home soon before he loses too much muscle strength. I am blessed that I can put out this request for prayer and know the faithful will there. Bless you.
Until next time,
Hopeful Believer
Wednesday, March 2, 2011
Mar 2, Day +33 What a pain!
"Just the Facts"-- 2 bags of blood, 2 bags of platelets, 2 drip poles, 10 bags hanging and a pain drip. Doesn't want to move.
Sounds just like a repeat, doesn't it? But funny how one experience preps you for the next. B loves his room, even without any decor, he loves his bed, even without any extra padding, he even loves his hospital gown, when he never wore it even once before. You see he is actually getting better from the transplant. But he is now dealing with a farely common side effect that has his man equipment under construction for the moment. At least that is what it looks like. Sorry guys, I know this is a sensitive issue for you. Girls deal with this type of stuff all the time, but you guys, it's a whole other adventure that you would vote to skip. The big doctor, is working on a plan to get him as comfortable as possible and get this virus out of him quick. If he wasn't doing the bladder wash, he would have this virus for at least 2 weeks, peeing blood.
So I can't tell you now how many liters of wash that have run through him. He was a bit too drugged to keep track and I was at work today. His pain has been so bad that they now have him on self administering pain meds. We are back to the monster drip pole again. He now has the record for having 10 bags hanging at one time and 2 of those bags are 6 pounds each of liquid. He will be quite the life of the party after this is all over with his experiential conversation, and yet who really wants to hear about this stuff?
I guess the lesson here is to not take a moment for granted, as it could always be or get worse, and you could pass up something precious if you wish the time away. In the midst of this B continues to blurt out this little one liner scriptures to encourage me. I am not the one who is all tied up with tubes. I can leave the room let alone the bed. It is not a major undertaking for me to move from one seat to the next. Yet he is trying to encourage me. I believe that he has a Great Friend whispering into his ear, just how much he is loved and cared for, and that nothing could separate him from this Great Friend. This Friend is there when I am there and yet stays when I leave. He is there when B sleeps, eats, laughs or grimaces in pain. I love this Great Friend, for how much He loves B. He loves each one of us just the same way He does B. I thank you for your prayers during this stretch of time and for all the past prayer times and for the ones to come. You have been a wonderful support to me, B and our entire family.
Until next time,
Hopeful Believer.
Sounds just like a repeat, doesn't it? But funny how one experience preps you for the next. B loves his room, even without any decor, he loves his bed, even without any extra padding, he even loves his hospital gown, when he never wore it even once before. You see he is actually getting better from the transplant. But he is now dealing with a farely common side effect that has his man equipment under construction for the moment. At least that is what it looks like. Sorry guys, I know this is a sensitive issue for you. Girls deal with this type of stuff all the time, but you guys, it's a whole other adventure that you would vote to skip. The big doctor, is working on a plan to get him as comfortable as possible and get this virus out of him quick. If he wasn't doing the bladder wash, he would have this virus for at least 2 weeks, peeing blood.
So I can't tell you now how many liters of wash that have run through him. He was a bit too drugged to keep track and I was at work today. His pain has been so bad that they now have him on self administering pain meds. We are back to the monster drip pole again. He now has the record for having 10 bags hanging at one time and 2 of those bags are 6 pounds each of liquid. He will be quite the life of the party after this is all over with his experiential conversation, and yet who really wants to hear about this stuff?
I guess the lesson here is to not take a moment for granted, as it could always be or get worse, and you could pass up something precious if you wish the time away. In the midst of this B continues to blurt out this little one liner scriptures to encourage me. I am not the one who is all tied up with tubes. I can leave the room let alone the bed. It is not a major undertaking for me to move from one seat to the next. Yet he is trying to encourage me. I believe that he has a Great Friend whispering into his ear, just how much he is loved and cared for, and that nothing could separate him from this Great Friend. This Friend is there when I am there and yet stays when I leave. He is there when B sleeps, eats, laughs or grimaces in pain. I love this Great Friend, for how much He loves B. He loves each one of us just the same way He does B. I thank you for your prayers during this stretch of time and for all the past prayer times and for the ones to come. You have been a wonderful support to me, B and our entire family.
Until next time,
Hopeful Believer.
Tuesday, March 1, 2011
Mar 1, day +32, ER woes
"Just the Facts"-- VK virus, no bed in the hospital and questionable care while we wait. 20 hours later we get a room, get washed, and perhaps some sleep.
What a long hellish day. B suffered so much. VK virus, which is what he was determined to have and is not uncommon to BMT patients, took hold yesterday while he was at infusion. Yes, it did start on Sunday which we were watching and were able to manage with care and still keep him comfortable. All that changed on Monday at 1pm. He continued to have painful symptoms and by the time I got to him after work, he was drugged, and just a mess. We then went to the ER to wait for a private room to wait for a bed upstairs. This is where the process broke down. You see, B is still a BMT patient and very delicate. So any type of complication no matter how small can become huge. We waited out in the hall trying to stay away from others, but he was so weak. We finally got a room in ER at 9:30 and we were grateful, but what a fiasco this room became. It quickly became evident that the expert care on the third floor of Thorton remained there and did not transcend to the ER. And that is all I will say about that. By 4 pm today B was rolled to a room on the 3rd floor, actually his exact transplant room. Finally after an exhausting long day and night, he is in a room where he will be well cared for in whatever state he is.
Tomorrow is our daughters birthday and her dad will still be in the hospital. He loves her so much and is concerned for her. She is so precious and loves him too and is only concerned that he will return home shortly. This is exactly how family should work. We are blessed to have this type of care and love abound in our home. This goes for our other daughter also as she has been such a help to me during this venture. We all are blessed by our love for one another. Can we every take this for granted. Hug a family member today if you have any opportunity.
Until next time,
Hopeful Believer.
What a long hellish day. B suffered so much. VK virus, which is what he was determined to have and is not uncommon to BMT patients, took hold yesterday while he was at infusion. Yes, it did start on Sunday which we were watching and were able to manage with care and still keep him comfortable. All that changed on Monday at 1pm. He continued to have painful symptoms and by the time I got to him after work, he was drugged, and just a mess. We then went to the ER to wait for a private room to wait for a bed upstairs. This is where the process broke down. You see, B is still a BMT patient and very delicate. So any type of complication no matter how small can become huge. We waited out in the hall trying to stay away from others, but he was so weak. We finally got a room in ER at 9:30 and we were grateful, but what a fiasco this room became. It quickly became evident that the expert care on the third floor of Thorton remained there and did not transcend to the ER. And that is all I will say about that. By 4 pm today B was rolled to a room on the 3rd floor, actually his exact transplant room. Finally after an exhausting long day and night, he is in a room where he will be well cared for in whatever state he is.
Tomorrow is our daughters birthday and her dad will still be in the hospital. He loves her so much and is concerned for her. She is so precious and loves him too and is only concerned that he will return home shortly. This is exactly how family should work. We are blessed to have this type of care and love abound in our home. This goes for our other daughter also as she has been such a help to me during this venture. We all are blessed by our love for one another. Can we every take this for granted. Hug a family member today if you have any opportunity.
Until next time,
Hopeful Believer.
Feb 28, day+31. Back to the hospital
"Just the Facts"-- tough day, infusion, kept bleeding, waiting for bed in er then in hospital, while getting bladder flush.
Our Sunday continued on into Monday with watching the urine flow. We had a 1 o'clock appointment at infusion to check on things. By 1o'clock that process was out of control, both with pain and bleeding. It was determined to admit him back into the hospital. Problem with that is you need a bed first. When I got to infusion poor think was drugged up and a mess. Well I am on the iPad again sand just lost what I just wrote, so I am calling it a night because we are still in er and it may be a while. Things will only go downhill with my typing now.
Until next time,
Hopeful believer.
Our Sunday continued on into Monday with watching the urine flow. We had a 1 o'clock appointment at infusion to check on things. By 1o'clock that process was out of control, both with pain and bleeding. It was determined to admit him back into the hospital. Problem with that is you need a bed first. When I got to infusion poor think was drugged up and a mess. Well I am on the iPad again sand just lost what I just wrote, so I am calling it a night because we are still in er and it may be a while. Things will only go downhill with my typing now.
Until next time,
Hopeful believer.
Sunday, February 27, 2011
Feb 27, day +31 Candid Camera?
"Just the Facts"-- UTI infection kept us close to the bathroom all day. Otherwise feeling OK.
Have you ever lived a day by 15 minute intervals? Well it is pretty tiring and really keeps you moving without much chance to do anything at all. B was diagnosed with a UTI, (urinary tract infection) I think this may be what the fever was reflecting. It is painful and causes the sensation of needing to use the bathroom quite frequently, every 15 minutes. Well, that is all par for the course, but in B's case he has the added feature of have some blood in his urine. Being a guy and the first time for a UTI, he didn't notice. But I did and we have been tracking it all day. Almost went to the ER twice today. But called first to make certain we were not in a crisis. We are watching this as B is very low on platelets. This means that he may not stop bleeding. So we watch everything very closely. It is been a day.
Have you ever lived a day by 15 minute intervals? Well it is pretty tiring and really keeps you moving without much chance to do anything at all. B was diagnosed with a UTI, (urinary tract infection) I think this may be what the fever was reflecting. It is painful and causes the sensation of needing to use the bathroom quite frequently, every 15 minutes. Well, that is all par for the course, but in B's case he has the added feature of have some blood in his urine. Being a guy and the first time for a UTI, he didn't notice. But I did and we have been tracking it all day. Almost went to the ER twice today. But called first to make certain we were not in a crisis. We are watching this as B is very low on platelets. This means that he may not stop bleeding. So we watch everything very closely. It is been a day.
Well you may be wondering where was yesterday's blog? Saturday was just another day in our life. It seems it was my turn to take a spin down the urgent care. I blew out my shoulder Thursday night and didn't feel the extreme effects until Friday night late. Couldn't sleep due to the excruciating pain. I had this once before about 3 years ago and it rendered my arm useless, so I didn't want the whole weekend to go that route. Saturday was my turn to be at the infusion center with B, but it was also Mom's training day. Well she got her monies worth, not only did she have to stay with B, but she had to go get a prescription at the pharmacy she just learned how to locate and she had to transport B home. All this so my sister, who was in town to assist, took me to urgent care. Aren't we in a sorry state. It's kinda funny when you think about it. But anyway that is my excuse for no blog last night The anti-inflammatory meds they gave me worked like a dream. I still feel some pain, but nowhere near what it was. I was able to track with B all day today, no problems. I have learned not to ask the question "What Next"? I wonder if at sometime, somebody is going to say "you're on Candid Camera"!
Until next time,
Hopeful Believer.
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