"Just the Facts"-- 2 Bags of blood and 1 bag of platelets, a new belt and feeling good!
B knew that his levels were slipping a bit towards the end of the week, and the infusion staff was thinking ahead and prepping for a blood and platelet infusion for Friday. So all this was infused on Friday along with an anti fungal medicine, which he has been getting every day for the last several weeks via infusion. This was initial given in place of the bad medicine and also helped to correct the yellow eye syndrome. Those levels are almost back to normal after 3 weeks. We are careful to watch for any symptoms after a medicine change as that is usually when we see something present. B was a bit discouraged yesterday when he was getting infused because he realized that all the blood levels were lower, but really all the steroids have a big part in this and that is contributing to his needed more. Today he was fueled and feeling much better. Eating helps and feeling good helps too. When he feels good he is able to think and actually do more during the day, which isn't a lot but still better than just sitting in his lounge.
While feeling so good today, B and daughter went on a field trip to get a new belt. They found just what B wanted and he was so happy to have a belt that fit. Now he can walk hands free, because he doesn't have to hold on to his pants to keep them up anymore, with a good fitting belt. It's the simple things that bring such joy. That is a life lesson we all keep learning over and over again. So keep you eyes and heart open for the little simple things that bring joy, and take the time to enjoy them.
Until next time,
Hopeful Believer.
Saturday, April 2, 2011
Wednesday, March 30, 2011
Mar 30, Day +60 Dreaming Crew Classic
"Just the Facts"--Up early, feeling OK, getting clearer in the head, working on talking better, levels are up and down a bit, but all is expected.
So B is weighing in at 137 pounds. Really, he is just a stick. Until this past year, with all the years of surfing he has always been a bit of a beefcake, if I do say so, myself. He has always done his own exercise routine. His habit was to do push up where ever or when ever he was in the house. He would do this to the tune of 1000 a day, no kidding. So today he was complaining about just how tired he was as we headed to the end of the day, so I reviewed with him what he did during the day and turns out all the usual stuff, except for the 200 push ups he said he did! Well duh, I guess that would make anybody tired, especially a skinny, immuno-suppressed BMT patient who is within the first 100 days of recovery. We were warned that the care giver was going to have to push the patient to get going and walk and workout, as it was the best way to recover. We heard this time and time again from various sources. But deep down I knew this would not be the case with B. He would take his recovery process very serious and be diligent to work on it from the get go. Guess I was right about all that. Gee whiz, 200 push ups!
On the flip side of all this is the enjoyment of shakes, malts and ice cream. The girls and B are testing out flavors and different concoctions to find the most pure and yet satisfying treat, while still being pasteurized. They are having fun to say the least. Of course I am not participating in this activity, as I have found some of the weight that B has lost. I joke with him that he can have some of mine back! The last few days have given us a glimpse of light at the end of the tunnel. We truly hope the progress we have had a taste of will continue without any new hiccups. We truly appreciate the kindness that has been shone to us by so many.
Until next time,
Hopeful Believer.
So B is weighing in at 137 pounds. Really, he is just a stick. Until this past year, with all the years of surfing he has always been a bit of a beefcake, if I do say so, myself. He has always done his own exercise routine. His habit was to do push up where ever or when ever he was in the house. He would do this to the tune of 1000 a day, no kidding. So today he was complaining about just how tired he was as we headed to the end of the day, so I reviewed with him what he did during the day and turns out all the usual stuff, except for the 200 push ups he said he did! Well duh, I guess that would make anybody tired, especially a skinny, immuno-suppressed BMT patient who is within the first 100 days of recovery. We were warned that the care giver was going to have to push the patient to get going and walk and workout, as it was the best way to recover. We heard this time and time again from various sources. But deep down I knew this would not be the case with B. He would take his recovery process very serious and be diligent to work on it from the get go. Guess I was right about all that. Gee whiz, 200 push ups!
On the flip side of all this is the enjoyment of shakes, malts and ice cream. The girls and B are testing out flavors and different concoctions to find the most pure and yet satisfying treat, while still being pasteurized. They are having fun to say the least. Of course I am not participating in this activity, as I have found some of the weight that B has lost. I joke with him that he can have some of mine back! The last few days have given us a glimpse of light at the end of the tunnel. We truly hope the progress we have had a taste of will continue without any new hiccups. We truly appreciate the kindness that has been shone to us by so many.
Until next time,
Hopeful Believer.
Monday, March 28, 2011
Mar 28, Day +58 Shakes, Malts and Ice Cream
"Just the Facts"-- Weekend recovery, eating much better, able to walk better, Head was a little clearer today. But tires by the end of the day.
One of the things we get when we go to infusion every day is a print out of the labs, from the blood taken. The report reveals the chemistry and blood levels. The liver/kidney issue is declining nicely but it has been over 2 weeks now and still not at normal levels. It only took 2 and half days on the "bad medicine" to go out of whack. But it has taken a lot more time to reverse the effects. B still needs to get stuff, like today he had platelets and some potassium. Saturday he got 2 bags of blood. All these make him feel better. The peeling continues and now the last frontier is the soles of his feet. This is a difficult area as the skin that is peeling is very thick here, this leave behind very new fresh, almost raw skin. So you can imagine the difficulties of making sure we protect this new skin and avoid any cracks. The other thing I haven't mentioned is that B lost his voice some time ago. His voice box is very weak and he can only squeak out words, hence he doesn't talk much. So phone calls and visits are difficult for him right now.
We have had some success with the weight. B's appetite has improved and he is able to eat more and keep it down. So we have added frozen yogurt, ice cream and some shakes and malts. We have bumped into some ice cream angels along the way! That has been fun and most appreciated. The end result so far is about 7 pounds. Some would think that eating like this is a dream come true, but B has paid a heavy price to be able to eat like this. So we continue to stuff him with healthy food and along the way allow some high calorie items to keep the scale going up. He is worried about his muscles, so when he gets some strength he will want to lift my 2 pound weights. Hey, you got to start somewhere. All this is just music to me, as I see my guy come back to life! We thank all of you who continue to keep us in your prayers and thoughts and those who support us in some many loving ways. We are truly very blessed.
Until next time,
Hopeful Believer.
One of the things we get when we go to infusion every day is a print out of the labs, from the blood taken. The report reveals the chemistry and blood levels. The liver/kidney issue is declining nicely but it has been over 2 weeks now and still not at normal levels. It only took 2 and half days on the "bad medicine" to go out of whack. But it has taken a lot more time to reverse the effects. B still needs to get stuff, like today he had platelets and some potassium. Saturday he got 2 bags of blood. All these make him feel better. The peeling continues and now the last frontier is the soles of his feet. This is a difficult area as the skin that is peeling is very thick here, this leave behind very new fresh, almost raw skin. So you can imagine the difficulties of making sure we protect this new skin and avoid any cracks. The other thing I haven't mentioned is that B lost his voice some time ago. His voice box is very weak and he can only squeak out words, hence he doesn't talk much. So phone calls and visits are difficult for him right now.
We have had some success with the weight. B's appetite has improved and he is able to eat more and keep it down. So we have added frozen yogurt, ice cream and some shakes and malts. We have bumped into some ice cream angels along the way! That has been fun and most appreciated. The end result so far is about 7 pounds. Some would think that eating like this is a dream come true, but B has paid a heavy price to be able to eat like this. So we continue to stuff him with healthy food and along the way allow some high calorie items to keep the scale going up. He is worried about his muscles, so when he gets some strength he will want to lift my 2 pound weights. Hey, you got to start somewhere. All this is just music to me, as I see my guy come back to life! We thank all of you who continue to keep us in your prayers and thoughts and those who support us in some many loving ways. We are truly very blessed.
Until next time,
Hopeful Believer.
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