"Just the Facts"-- Feeling pretty good today. Hardly any pain, no Benadryl, head clear, energy up from blood infusion yesterday. Still waiting on the counts.
Even though B had two 1 hour sleep sessions while I was there today, he felt pretty good. The blood and platelets he got last night gave him some energy today. He only had pain in the morning, so really didn't need too much pain medicine, so his head was very clear. He was able to walk laps around the ward about every hour or so. He is really looking forward to coming home. After the doctors made their rounds and checked B out, they said the blood counts come at and individual pace, so there is no exact time. They do expect them but they cannot put a time on it. This news was interpreted as being in the hospital longer. Well this thought moved B into a trapped feeling and then his anxiety about being locked up started to increase. I know he is hooked up to pain meds, but anxiety and pain are two different things, so we talked to the nurse from some anti-anxiety meds. This is on order when he wants or needs it. We have been down this road before. Anyway after he got the meds, he calmed down quite a bit. He then told me that he was ready to bolt earlier, but he didn't see how he would get his monster drip pole onto the bus! : ) The machines scream a silent song that say, "where you go we go". Just feeling good was a great thing and we were happy to be there. So many others are not up, or able to eat, or even out walking. We are so thankful for this progress. Now we will wait patiently for those precious cells to begin moving on their own and showing up in the testing.
The effective fervent prayer of a righteous man avails much. This is one of my favorite verses in the Bible. James 5:16. I believe that the paragraph above is a result of so much prayer going up by so many on our behalf. We are so thankful to each one of you. And very soon B will be home where he belongs, enjoying his family and the simple things of life. This of course, after a drive by the beach!
Until next time,
Hopeful Believer.
Saturday, February 12, 2011
Feb 11, Day +15 Date nite
Delayed: Sorry for the delay, Internet was tripping out, I was too tired to mess with it last night.
"Just the Facts"-- Sleepy today, finally the white cells show up, new meds for the rash.
I haven't said much about the white blood cell count because they are low, demolished from the chemo and kept down by all the immuno-suppressant drugs. The other reason is that they are so low the lab test machines are not sensitive enough to read the cells at this low amount. They have to increase to get a reading. Well, today the white blood cells showed up. The amount was small, but the great news is that the platelets don't start holding their levels until the whites start to show up. So we crossed another hurdle. Being Friday, we had a hospital date nite planned. We were going to watch a movie and have creamsicle Popsicles. Sounds great, right! Well we were joined by Benadryl 50 mg, 2 bags of red blood cells and 1 bag of platelets 5 pack. The Benadryl was all that was needed to put Brad out, but it was chased with the blood and platelets and there went the evening. Oh don't worry, I didn't have high hopes for a fabulous date. There has not been a night or day that I have been there, that B didn't fall asleep for a period of time.
At this point, any time he can catch some sleep is just fine with me.
Although B is weak and tired most the time, he does have some moments when he feels OK. It is in these moments that he will return a call or types an e-mail. Under normal conditions he is usually a chatty Cathy! So the recipients who get these calls or e-mails, just think he doesn't sound sick! Well those people cannot see the 5 tubes that run from his chest catheter to his monster drip pole that is 20 pounds to push. They also don't see that he can only manage 2 to 3 laps around the hospital ward. Each leg of the triangle has 6 doors, so the ward is really very small. After that he is wiped out and needs to lay down. Also my sister wanted me to rewind on GVH, I made reference to GVH, about this item earlier in the blog Jan 24. GVH is a side effect of transplant patients. Almost 50% get it. It stands for Graph versus Host and is where the graphed cells fight with the host cells. You see the host cells are fighting for their territory, which is what they were made to do and they don't want to give up easily, even with all the drugs given to reduce their abilities. This disease effects certain organs, skin, mouth, eyes, liver, kidney. It can range from mild to severe and can show right away or after 100 days. All the studies say, that it is actually good to get a little bit of this. These patients tend to do better. I don't understand that. But then so much of this process is way over my head. Anyhow we will wait to see what the results of the biopsy says. Until then, enjoy this gorgeous weather we are having! Spend the day with some of your favorite people. I am learning this more each day.
Until next time,
Hopeful Believer.
"Just the Facts"-- Sleepy today, finally the white cells show up, new meds for the rash.
I haven't said much about the white blood cell count because they are low, demolished from the chemo and kept down by all the immuno-suppressant drugs. The other reason is that they are so low the lab test machines are not sensitive enough to read the cells at this low amount. They have to increase to get a reading. Well, today the white blood cells showed up. The amount was small, but the great news is that the platelets don't start holding their levels until the whites start to show up. So we crossed another hurdle. Being Friday, we had a hospital date nite planned. We were going to watch a movie and have creamsicle Popsicles. Sounds great, right! Well we were joined by Benadryl 50 mg, 2 bags of red blood cells and 1 bag of platelets 5 pack. The Benadryl was all that was needed to put Brad out, but it was chased with the blood and platelets and there went the evening. Oh don't worry, I didn't have high hopes for a fabulous date. There has not been a night or day that I have been there, that B didn't fall asleep for a period of time.
At this point, any time he can catch some sleep is just fine with me.
Although B is weak and tired most the time, he does have some moments when he feels OK. It is in these moments that he will return a call or types an e-mail. Under normal conditions he is usually a chatty Cathy! So the recipients who get these calls or e-mails, just think he doesn't sound sick! Well those people cannot see the 5 tubes that run from his chest catheter to his monster drip pole that is 20 pounds to push. They also don't see that he can only manage 2 to 3 laps around the hospital ward. Each leg of the triangle has 6 doors, so the ward is really very small. After that he is wiped out and needs to lay down. Also my sister wanted me to rewind on GVH, I made reference to GVH, about this item earlier in the blog Jan 24. GVH is a side effect of transplant patients. Almost 50% get it. It stands for Graph versus Host and is where the graphed cells fight with the host cells. You see the host cells are fighting for their territory, which is what they were made to do and they don't want to give up easily, even with all the drugs given to reduce their abilities. This disease effects certain organs, skin, mouth, eyes, liver, kidney. It can range from mild to severe and can show right away or after 100 days. All the studies say, that it is actually good to get a little bit of this. These patients tend to do better. I don't understand that. But then so much of this process is way over my head. Anyhow we will wait to see what the results of the biopsy says. Until then, enjoy this gorgeous weather we are having! Spend the day with some of your favorite people. I am learning this more each day.
Until next time,
Hopeful Believer.
Thursday, February 10, 2011
Feb 10, Day +14, Up up and away, we hope
"Just the Facts"-- Very tired today, can't remember what he was going to say, appetite has diminished, But some good news today as well.
So B had a revelation about his night sleeping issues. Instead of fighting to get back to sleep when he is awoken from the many things that happen, he decided to just go with it and then try to catch up sleep in the day time. Of course this goes against a normal persons pattern, but for a BMT patient, this routine is quite alright. It just took him a little while to figure it out. So, last night he went to bed at 8:30 (remember I wasn't here) then slept until 10pm when they come in and out for about a half hour to draw blood, take vitals, give meds and so on. He then slept until 3am. This is where he would fight to get back to sleep, but he went for a walk, had a Popsicle and then watched a movie until he could fall a sleep again at 4:30am. Pregnant women know that you have go to sleep when you can. It just took B a little longer to catch on. So as I sit here and type he is sleeping and it is about 8:30pm. Hopefully this new found sleep pattern will help him catch up on some much needed sleep. Everything has gotten very sensitive, sound bugs him, his sheets bug his skin, too much talking bugs him. I even have to bring in TP from home. Not a problem to help someone whose has been through so much.
We got some good news today, his platelets reached an all time high of 22. Now we are waiting to see if they hold. You see when it was around 9, they would draw 3 times a day to check them. But at 22 now they will only draw them once a day at 10pm. So we won't hear results until tomorrow. But the 22 held for around 12 hours, so that is great. The other thing is that the big doctor checked his spleen and said that it had shrunk. This was great news. It is a result of the chemo and was expected. But it is good to have results that are according to plan. So the exciting part of this will be to get the news about how well the platelets held. He will get more blood tonight and this will continue until the new super cells can produce a ton of red blood cells to make up for what B is missing. They are trying to keep his hemocrit at 25%, so when it goes below they infuse him. I never new this much about blood before. I can't believe I can retain it as my memory wanes at times. Every time I walk into this room, I do a double check to make sure it is the correct room, as there is a bald man in the room. :) B says the same thing every time he looks in the mirror. We laugh at that, then he goes to sleep. B has a wonderfully faithful Aunt, who has sent him a card every few days. This is a sweet blessing. We feel so enriched by all the love and support by so many. We thank you and pray God's love to be poured out to each one of you.
Until next time,
Hopeful Believer.
So B had a revelation about his night sleeping issues. Instead of fighting to get back to sleep when he is awoken from the many things that happen, he decided to just go with it and then try to catch up sleep in the day time. Of course this goes against a normal persons pattern, but for a BMT patient, this routine is quite alright. It just took him a little while to figure it out. So, last night he went to bed at 8:30 (remember I wasn't here) then slept until 10pm when they come in and out for about a half hour to draw blood, take vitals, give meds and so on. He then slept until 3am. This is where he would fight to get back to sleep, but he went for a walk, had a Popsicle and then watched a movie until he could fall a sleep again at 4:30am. Pregnant women know that you have go to sleep when you can. It just took B a little longer to catch on. So as I sit here and type he is sleeping and it is about 8:30pm. Hopefully this new found sleep pattern will help him catch up on some much needed sleep. Everything has gotten very sensitive, sound bugs him, his sheets bug his skin, too much talking bugs him. I even have to bring in TP from home. Not a problem to help someone whose has been through so much.
We got some good news today, his platelets reached an all time high of 22. Now we are waiting to see if they hold. You see when it was around 9, they would draw 3 times a day to check them. But at 22 now they will only draw them once a day at 10pm. So we won't hear results until tomorrow. But the 22 held for around 12 hours, so that is great. The other thing is that the big doctor checked his spleen and said that it had shrunk. This was great news. It is a result of the chemo and was expected. But it is good to have results that are according to plan. So the exciting part of this will be to get the news about how well the platelets held. He will get more blood tonight and this will continue until the new super cells can produce a ton of red blood cells to make up for what B is missing. They are trying to keep his hemocrit at 25%, so when it goes below they infuse him. I never new this much about blood before. I can't believe I can retain it as my memory wanes at times. Every time I walk into this room, I do a double check to make sure it is the correct room, as there is a bald man in the room. :) B says the same thing every time he looks in the mirror. We laugh at that, then he goes to sleep. B has a wonderfully faithful Aunt, who has sent him a card every few days. This is a sweet blessing. We feel so enriched by all the love and support by so many. We thank you and pray God's love to be poured out to each one of you.
Until next time,
Hopeful Believer.
Wednesday, February 9, 2011
Feb 9, Day +13 Boomarang numbers
"Just the Facts"-- Highest numbers yet, but still not holding, so more platelets, 2 bags and a biopsy to test for GVH.
We are really watching the platelet numbers bounce. Last night they hit the highest number yet at 16, but this morning they were back down to 9. So they infused another 5 pack of platelets. Each time they do this they always pre-medicate B to ward off any type of reaction. Part of the pre-meds are 50 mg of Benadryl. That is a lot and will make you really sleepy, so on top of all the other medicines and pain meds, he has the Benadryl to deal with, so no wonder he is so tired and still cannot get good sleep. He got a second bag of platelets later in the day and then his numbers tested out at 22. This is the highest yet. We are just hoping that it holds. Many of the BMT team members have told B that he is doing really well. That is quite an encouragement from this very knowledgeable and experienced team.
I haven't mentioned this before, but one of the side effects of low platelets is a type of rash that comes out on your skin, call petichiae, I am sure that is not the correct spelling. This rash looks like little red sores just under the skin. These have been present for about a week now,becoming more prevalent each day. Well, today the big doctor decided to get a definitive answer about this rash and make certain what it is, as there is a possibility that it could be early GVH. In all the research I have studied on this, it mentions that a patient that gets a little touch of GVH, usually does really well in recovery. This is strange and not fully understood. Actually it goes against all reason, but then we never created these bodies, so I can see why we don't know exactly how they work in every instance. We won't get the results of the biopsy for a few days.
Today was the first day I didn't go to the hospital. I was a little dizzy with a weird 24 hour flu I get every year. So B had to spend most the entire day by himself. He went to bed at 8 due to being so tired. I am hoping he can get some good sleep, as this will go a long way to getting healed. Thanks for your kind thoughts and prayers on our behalf.
Until next time,
Hopeful Believer.
We are really watching the platelet numbers bounce. Last night they hit the highest number yet at 16, but this morning they were back down to 9. So they infused another 5 pack of platelets. Each time they do this they always pre-medicate B to ward off any type of reaction. Part of the pre-meds are 50 mg of Benadryl. That is a lot and will make you really sleepy, so on top of all the other medicines and pain meds, he has the Benadryl to deal with, so no wonder he is so tired and still cannot get good sleep. He got a second bag of platelets later in the day and then his numbers tested out at 22. This is the highest yet. We are just hoping that it holds. Many of the BMT team members have told B that he is doing really well. That is quite an encouragement from this very knowledgeable and experienced team.
I haven't mentioned this before, but one of the side effects of low platelets is a type of rash that comes out on your skin, call petichiae, I am sure that is not the correct spelling. This rash looks like little red sores just under the skin. These have been present for about a week now,becoming more prevalent each day. Well, today the big doctor decided to get a definitive answer about this rash and make certain what it is, as there is a possibility that it could be early GVH. In all the research I have studied on this, it mentions that a patient that gets a little touch of GVH, usually does really well in recovery. This is strange and not fully understood. Actually it goes against all reason, but then we never created these bodies, so I can see why we don't know exactly how they work in every instance. We won't get the results of the biopsy for a few days.
Today was the first day I didn't go to the hospital. I was a little dizzy with a weird 24 hour flu I get every year. So B had to spend most the entire day by himself. He went to bed at 8 due to being so tired. I am hoping he can get some good sleep, as this will go a long way to getting healed. Thanks for your kind thoughts and prayers on our behalf.
Until next time,
Hopeful Believer.
Tuesday, February 8, 2011
Feb 8, Day +12 Infusion city
"Just the Facts"-- Frustrating night of no sleep, topped off with 2 bags of blood and then 2 bags of platelets. Tired, but still walking and trying to eat.
Well B's platelet levels didn't hold as well as hoped. They were at 14 yesterday and went down to 13, then over night went down to 7, that is dangerously low, so he got platelets in the morning and then they went up to 11, but by afternoon they were back down to 9, so he got another bag. He is getting what is called a 5 pack. That is a group of 5 individual donors platelets mixed together that have been cross typed for similar antigens as B's. Unlike red blood cells, platelets are a kind of yellow opaque fluid and come in a much bigger bag than blood. It takes longer to donate platelets as they pull the blood, then spin the platelets out and then give you your blood back. Otherwise they would end up taking too much blood from the donor to get enough platelets. If you become a platelet donor, they continue to call you for follow ups as the need is very specific. So just like being a blood donor is great, so is being a platelet donor. People who donate any type of blood product are hero's! Even though he was really tired from a lake of sleep, the blood infusion gave him a boost. It is always great to see him feeling OK enough to walk, watch a movie or play chess.
We are on Day +12, and that in and of itself is amazing. We are looking forward to seeing some of the numbers start to move. It could happen any day. Once that begins, they just go up and up. Once they hit certain levels, then B can go home. Also his pain will start to decrease, which indicates that the super cells have settled in and started to produce. We continue to watch for GVH disease, and so far nothing. This is all very good. We thank you all for the concern and prayer that continues to go up on our behalf. Many of you have blessed us so, using your own unique gifts of thoughtfulness, generosity, encouragement, selflessness. We had a pie delivered to us the other day. And today a happy,"we are thinking of you" card showed up to bless us. I say thank you to each and every one of you for your kindness. We feel so blessed by all the care.
Until next time,
Hopeful Believer
Well B's platelet levels didn't hold as well as hoped. They were at 14 yesterday and went down to 13, then over night went down to 7, that is dangerously low, so he got platelets in the morning and then they went up to 11, but by afternoon they were back down to 9, so he got another bag. He is getting what is called a 5 pack. That is a group of 5 individual donors platelets mixed together that have been cross typed for similar antigens as B's. Unlike red blood cells, platelets are a kind of yellow opaque fluid and come in a much bigger bag than blood. It takes longer to donate platelets as they pull the blood, then spin the platelets out and then give you your blood back. Otherwise they would end up taking too much blood from the donor to get enough platelets. If you become a platelet donor, they continue to call you for follow ups as the need is very specific. So just like being a blood donor is great, so is being a platelet donor. People who donate any type of blood product are hero's! Even though he was really tired from a lake of sleep, the blood infusion gave him a boost. It is always great to see him feeling OK enough to walk, watch a movie or play chess.
We are on Day +12, and that in and of itself is amazing. We are looking forward to seeing some of the numbers start to move. It could happen any day. Once that begins, they just go up and up. Once they hit certain levels, then B can go home. Also his pain will start to decrease, which indicates that the super cells have settled in and started to produce. We continue to watch for GVH disease, and so far nothing. This is all very good. We thank you all for the concern and prayer that continues to go up on our behalf. Many of you have blessed us so, using your own unique gifts of thoughtfulness, generosity, encouragement, selflessness. We had a pie delivered to us the other day. And today a happy,"we are thinking of you" card showed up to bless us. I say thank you to each and every one of you for your kindness. We feel so blessed by all the care.
Until next time,
Hopeful Believer
Monday, February 7, 2011
Feb 7, Day +11 Ready to climb
"Just the Facts"--More platelets, more pain, more weariness, more chemo, some sleep, and a new chair.
As the pain in B's bones increase, the more weary he gets. He is pushing to continue walking laps although each lap gets harder and harder and he becomes winded. This evening he could only do 1 lap. I say he got some sleep, as in the middle of the night, cabin fever or "mad cow disease" hit him like a frenzy. In an effort to get more comfortable he cut up a mattress pad I had brought in earlier. He didn't want to use it earlier in the day, but then at night, cut off the elastic portion and threw it on the bed. Then he attacked his shoes and cut the backs out of those to make them slip ons. I say "mad cow disease" as this is the one disease that the US does not test for in blood products and we had to sign a waiver in case he got it. Can it strike for a moment in the middle of the night? Fortunately, things settled down as the sun came up! We got a new chair in the room as well. B does not like to sit in bed to eat, even as a patient it is just not his thing. The chairs I have been sitting in are extremely uncomfortable and with his aching bones, difficult even for moments. The physical therapist was able to find a soft recliner type chair. So you might say today was successful on a few fronts. Bed comfort was somewhat achieved, shoe frustration was eliminated and sitting comfort was added, and some all over frustration was spent.
I am sure you all know that we have 3 types of cells to our blood, red, white and platelets. They each have different functions and also work together as a whole. Normal platelet counts are 150, to 400. They use these numbers but really you need to add 3 zeros to these. Well since the chemo, B's platelets have been decreasing. The caution here is fear of bleeding as platelets are needed to coagulate the blood which helps to stop bleeding. So B has to be very careful not to cut himself in any way. His count has been at a 9 to 11. He won't be able to go home until they are at least 50. These cells are just another cell that the new super cells are going to start producing. Up until today his platelet infusions had not been holding. He just kept decreasing. Today's platelets increased slightly and held. This was most likely due to getting a good batch with matching antigens. It could also be those super cells beginning to work a bit. Time will tell as this is only day 11, and they say it begins to show around day +15 or so. Today is also the last day for chemo. Again it is just low dose for maintenance, but yea, the last round. We were very happy to be this far along. We are excited to see what this week will reveal.
Until next time,
Hopeful Believer
As the pain in B's bones increase, the more weary he gets. He is pushing to continue walking laps although each lap gets harder and harder and he becomes winded. This evening he could only do 1 lap. I say he got some sleep, as in the middle of the night, cabin fever or "mad cow disease" hit him like a frenzy. In an effort to get more comfortable he cut up a mattress pad I had brought in earlier. He didn't want to use it earlier in the day, but then at night, cut off the elastic portion and threw it on the bed. Then he attacked his shoes and cut the backs out of those to make them slip ons. I say "mad cow disease" as this is the one disease that the US does not test for in blood products and we had to sign a waiver in case he got it. Can it strike for a moment in the middle of the night? Fortunately, things settled down as the sun came up! We got a new chair in the room as well. B does not like to sit in bed to eat, even as a patient it is just not his thing. The chairs I have been sitting in are extremely uncomfortable and with his aching bones, difficult even for moments. The physical therapist was able to find a soft recliner type chair. So you might say today was successful on a few fronts. Bed comfort was somewhat achieved, shoe frustration was eliminated and sitting comfort was added, and some all over frustration was spent.
I am sure you all know that we have 3 types of cells to our blood, red, white and platelets. They each have different functions and also work together as a whole. Normal platelet counts are 150, to 400. They use these numbers but really you need to add 3 zeros to these. Well since the chemo, B's platelets have been decreasing. The caution here is fear of bleeding as platelets are needed to coagulate the blood which helps to stop bleeding. So B has to be very careful not to cut himself in any way. His count has been at a 9 to 11. He won't be able to go home until they are at least 50. These cells are just another cell that the new super cells are going to start producing. Up until today his platelet infusions had not been holding. He just kept decreasing. Today's platelets increased slightly and held. This was most likely due to getting a good batch with matching antigens. It could also be those super cells beginning to work a bit. Time will tell as this is only day 11, and they say it begins to show around day +15 or so. Today is also the last day for chemo. Again it is just low dose for maintenance, but yea, the last round. We were very happy to be this far along. We are excited to see what this week will reveal.
Until next time,
Hopeful Believer
Sunday, February 6, 2011
Feb 6, Day +10 You win some, you lose some
"Just the Facts"-- Finally got some sleep last night, pain increased significantly today, lost hair.
The new set up of self administering pain meds and sleeping pill at about 10:30 pm paved the way finally for a decent night sleep. This was so overdue. There wasn't any part of B's body that wasn't begging to have sleep. So that was a good report this morning, but the second report was not as encouraging. B called me to tell me to bring the scissors, as his hair was falling out. We have had some discussions about this possibility. Some said for sure it would, others said it would just thin out. The problem is that when this begins to happen it is so annoying. Hair tickling your face and can't get rid of it because there is always more coming down. Hair falling in your food, your eyes, and then you shirt, pillow and bed. Then there is the mental part of looking down and seeing your pillow covered with your hair. B is a very neat person and this was just not going to be tolerated. So got to the hospital at 10am with scissors in hand and started snipping away. He was very weak and in a lot of pain, but didn't want me to stop until it was all done. When it was all snipped short, we got the shaver and buzzed all the rest away. He then showered and felt normal again except for that strange man he saw in the mirror. He is looking very military!
The pain is increasing a bit and he is less able to walk. It now seems to be penetrating his arms more. If I were a detective I would determine that the pain is concentrated in all the larger bone areas. I can't know for sure but this sounds right and it has been increasing since he started getting the rejuvenator shots. The real test is the blood counts and waiting to see those increase. Platelets are still very low, which is not a concern yet but the staff here is trying to do everything they can to keep them up. They have begun to type cross the platelets to get better matching antigens. If they find the right group that will take better and cause the platelets to increase. But the real solution is for the new cells to start producing. Right now they are just finding there way to the bone marrow to set up house. They are trying to kick out the old stuff and it is a bit of a war, that is why so much pain.
The other issue going on is the result of the second Chemo cocktail given on day -4. This was the chemo that attacks the fast recurring cells found in the mouth, esophagus, stomach and intestine. The dead cells, called mucositis, slough off and get eliminated, but the process is fairly uncomfortable. Eating becomes more difficult while this process in going on. So far B's mouth is sore-free, but his throat is sore and stomach a bit uneasy. So we have switched today to soft foods and lots of Popsicles! B has always been funny, and now with the pain meds he is really funny. The nursing staff is cracking up over him. Also they said, they could not believe as a chemo patient he kept his hair so long! Thank you all for the prayers and support.
Until next time,
Hopeful Believer.
The pain is increasing a bit and he is less able to walk. It now seems to be penetrating his arms more. If I were a detective I would determine that the pain is concentrated in all the larger bone areas. I can't know for sure but this sounds right and it has been increasing since he started getting the rejuvenator shots. The real test is the blood counts and waiting to see those increase. Platelets are still very low, which is not a concern yet but the staff here is trying to do everything they can to keep them up. They have begun to type cross the platelets to get better matching antigens. If they find the right group that will take better and cause the platelets to increase. But the real solution is for the new cells to start producing. Right now they are just finding there way to the bone marrow to set up house. They are trying to kick out the old stuff and it is a bit of a war, that is why so much pain.
The other issue going on is the result of the second Chemo cocktail given on day -4. This was the chemo that attacks the fast recurring cells found in the mouth, esophagus, stomach and intestine. The dead cells, called mucositis, slough off and get eliminated, but the process is fairly uncomfortable. Eating becomes more difficult while this process in going on. So far B's mouth is sore-free, but his throat is sore and stomach a bit uneasy. So we have switched today to soft foods and lots of Popsicles! B has always been funny, and now with the pain meds he is really funny. The nursing staff is cracking up over him. Also they said, they could not believe as a chemo patient he kept his hair so long! Thank you all for the prayers and support.
Until next time,
Hopeful Believer.
Feb 5, Day +9 Bone Pain could be good!
"Just the Facts"-- Still had a difficult night of sleep, needed platelets in the morning, hope for a better night sleep with new pain gear.
After a difficult day yesterday B was still not able to get good sleep last night. I stayed late just to help ease the anxiety about the night. Once he dosed off, I left without waking him as we agreed. He worked up shortly after very disoriented and wondering where I was. He thought we switched rooms on him. Of course we didn't, but all day today, he thought he was in the wrong room. This is what days of being on the pain meds will do. After a long discussion with the pharmacist that travels with the group of doctors as they visit patients, a determination to put B on a Morphine pump that he could administer himself was engaged. His drip pole is now outfitted with another med dispenser and pump and now carries 7 bags. So as you can imagine, B was testing the pump out to see how fast the relief would dispense and he was on and off funny. He still thought we switched rooms. The best news in all this was that the lead doctor told him she really thought his pain was from serum sickness. The pain is evenly distributed in the shoulders, both hips and across the lower back. It's so even that it rings of the bones deep down being disturbed. It's like a little war is going on where the new stronger immigrant cells are fighting to kick out the old weaker native bone marrow cells, and they don't just lie down and give up. So in a way we are happy that the pain is there as that means that the new cells are stirring things up, and now that B can better manage the pain he may get better sleep. Sleep will help with everything, so that is worth the hassle of the morphine pump.
B's parents were able to visit today. This was a major blessing. Up till now they were unable to visit due to some health issues of their own. It was so reassuring to them to be able to see him and hear from him how he was doing. This went a long way in lifting a burden in their hearts. I have a friend that has been so faithful to check on me and send me phone texts. Sometimes I can respond, sometimes there are distractions that keep me from answering. So it was again a little blessing to see this friend pull up beside me, while on my errand to pick up some milk. I was tired and still had a few chores to do, but this simple coincidence just blessed me so. Just like B was blessed by his parents visit. It ended up being a good day!
Until next time,
Hopeful Believer.
B's parents were able to visit today. This was a major blessing. Up till now they were unable to visit due to some health issues of their own. It was so reassuring to them to be able to see him and hear from him how he was doing. This went a long way in lifting a burden in their hearts. I have a friend that has been so faithful to check on me and send me phone texts. Sometimes I can respond, sometimes there are distractions that keep me from answering. So it was again a little blessing to see this friend pull up beside me, while on my errand to pick up some milk. I was tired and still had a few chores to do, but this simple coincidence just blessed me so. Just like B was blessed by his parents visit. It ended up being a good day!
Until next time,
Hopeful Believer.
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