Today was a Great Day! Jim finished his RSV treatments - Yea! My mom came to the Hospital this morning to sit with Jim while I helped Sarah get ready for Violin Federation. We picked my mom up at the hospital and headed to the U of U. Sarah did a great job. She was worried about performing today because violin has not really been her focus the last couple of weeks (Hmmm I wonder why). She has still been practicing but just didn't know if the focus was there. I really wanted her to still try though because she has worked so hard. She did a great job and got a superior.
After, we came to the hospital. Sarah and Nate got to see their dad. Nate hadn't seen him since the breathing tube was placed so I didn't know how he would react. He told me "you know, it's not too bad." I think they were both just so happy to see him. I also think that they see beyond the tubes and swelling and just see their Dad. It was great for him. I haven't seen him so alert and smiley for a while. We had recorded Sarah's performance and loaded it on the computer. He watched it twice in a row. He was so proud of her.
Jim seams better today to me. Of course now he is off all of the sedating drugs now that the RSV treatments are done. So now he actually opens his eyes and wants to engage a little. He actually put his glasses on so he could see today. It is so nice to see him alert. He is still weak but I can tell a little stronger than yesterday. Now we are just focusing on getting him stronger and weaning him from the ventilator. It could take a few days. I am anxious because I would like to see him get back up to the bonemarrow floor soon.
Today I AM THANKFUL FOR a beautiful daughter who pushes herself and endures. She is also sweet, faithful, kind, funny, brave, stubborn, smart, friendly and best of all mine.
Saturday, March 27, 2010
Friday, March 26, 2010
Day 15 Post Transplant - 24 days in Hospital
I was able to go home last night. Yea! Jim's dear friend Ben came and stayed with him. Jim rested well and was doing well when I came this morning. He is having really high blood pressure again though, so they are having to deal with that. His brother Don and his wife Jane came for a visit today. They live in Kentucky so that was a nice treat. Jim still pretty much sleeps through his visitors. I know that he hears what is going on and occasionally will smile and grin. I think it just takes too much energy to open his eyes and try to communicate for now. He is getting a treatment right now. He is almost done with them. I am not sure if he has 2 or 3 left but we will for sure be done tomorrow. After that, we start to wean him from the ventilator. That could take a couple of days. I am hoping we can be back up on the bonemarrow floor this next week.
Tomorrow, Sarah performs a violin piece at Violin Federation. She has Violin Federation every March. The students get judged and can earn trophy's. She has worked so hard, so I hope she can focus and be able to play. Usually Jim practices with her alot. He worked with her before he went in the hospital. It is a big deal because they work for months perfecting a song. So, hopefully despite goings on in our life she will be able to do well.
Spencer is going to Prom tonight at Roy High School with a cute friend of his. I am so out of the loop, I don't even know what he is wearing. I reminded him about flowers yesterday. Of course he had forgotten, but when I got home last night he had called his friend Blake's mom and she said she would take care of it. I am so lucky that my kids have people that will be their Mommy when their Mommy is taking care of their Daddy. Thank you so much guys! I am so impressed with your love and service.
Today I AM THANKFUL FOR only a few more RSV treatments. Yea!
Tomorrow, Sarah performs a violin piece at Violin Federation. She has Violin Federation every March. The students get judged and can earn trophy's. She has worked so hard, so I hope she can focus and be able to play. Usually Jim practices with her alot. He worked with her before he went in the hospital. It is a big deal because they work for months perfecting a song. So, hopefully despite goings on in our life she will be able to do well.
Spencer is going to Prom tonight at Roy High School with a cute friend of his. I am so out of the loop, I don't even know what he is wearing. I reminded him about flowers yesterday. Of course he had forgotten, but when I got home last night he had called his friend Blake's mom and she said she would take care of it. I am so lucky that my kids have people that will be their Mommy when their Mommy is taking care of their Daddy. Thank you so much guys! I am so impressed with your love and service.
Today I AM THANKFUL FOR only a few more RSV treatments. Yea!
Thursday, March 25, 2010
Day 14 Post transplant - 23 days in Hospital
After reading yesterdays blog, I realize I sounded pretty witchy. I guess just a little protective of my man. Last night went much better. Jim slept through the night pretty good. I had to leave the room for his 10 pm treatment and 6:00 AM treatment. He tolerated them much better with less anxiety.
Jim's brother Bob came to visit Jim yesterday. I feel bad for Bob though because Jim has seen better days. Yesterday was a rough day because of his adventures the night before. He was exhausted yesterday, drugged up and then they tried to drag him down the hall. He did it, but didn't tolerate it too well. That was way too much activity for him.
Today, He is less drugged up, still tired and stood at the bedside and sat in a chair. He is still confused at times. After his 10 pm treatment tonight, he only has 5 more left Yea! Then we look at ventilator removal. Yea Again! Then he will be able to talk to me. Yea! but then again, maybe not yea! After his little outburst the other night I may not want to hear what he has to say. Just Kidding! Bren talked to him on the speaker phone today. Bren told him he heard that Jim had ripped out his tubes. He told Jim that he thought that was pretty "Bad A" and Jim just grinned. Bren said "a little temper tantrum huh dad?" He grinned again and was pretty proud of himself. That's my boy. Still has that fight in him. Just letting us know he still has a voice in all of this. I asked him the other day if he felt like he had any choices anymore. He made a frown and said no. I told him that this is all about his choice. His choice was to fight and all of this other stuff is part of the fight. I said "you didn't think it was going to be this hard though did you? He shook his head. I think when he finishes the treatment and gets the tubes out and sees some progress, he will start to feel better about things. Right now I am sure he just feels stuck. He only sees what he can't do or needs help to do. I just need to keep reminding him that he is fighting for me and the kids. I keep telling him to "keep his eye on the prize." I am sure right now he just looks at me and thinks "you are sooooooo not worth THIS." Ha Ha.
Today I AM THANKFUL that he will probably forget all of this time he has spent in the ICU. (One can hope.)
Jim's brother Bob came to visit Jim yesterday. I feel bad for Bob though because Jim has seen better days. Yesterday was a rough day because of his adventures the night before. He was exhausted yesterday, drugged up and then they tried to drag him down the hall. He did it, but didn't tolerate it too well. That was way too much activity for him.
Today, He is less drugged up, still tired and stood at the bedside and sat in a chair. He is still confused at times. After his 10 pm treatment tonight, he only has 5 more left Yea! Then we look at ventilator removal. Yea Again! Then he will be able to talk to me. Yea! but then again, maybe not yea! After his little outburst the other night I may not want to hear what he has to say. Just Kidding! Bren talked to him on the speaker phone today. Bren told him he heard that Jim had ripped out his tubes. He told Jim that he thought that was pretty "Bad A" and Jim just grinned. Bren said "a little temper tantrum huh dad?" He grinned again and was pretty proud of himself. That's my boy. Still has that fight in him. Just letting us know he still has a voice in all of this. I asked him the other day if he felt like he had any choices anymore. He made a frown and said no. I told him that this is all about his choice. His choice was to fight and all of this other stuff is part of the fight. I said "you didn't think it was going to be this hard though did you? He shook his head. I think when he finishes the treatment and gets the tubes out and sees some progress, he will start to feel better about things. Right now I am sure he just feels stuck. He only sees what he can't do or needs help to do. I just need to keep reminding him that he is fighting for me and the kids. I keep telling him to "keep his eye on the prize." I am sure right now he just looks at me and thinks "you are sooooooo not worth THIS." Ha Ha.
Today I AM THANKFUL that he will probably forget all of this time he has spent in the ICU. (One can hope.)
Wednesday, March 24, 2010
Day 13 Post Transplant - 22 days in Hospital
Woke up at 2:00 AM and was wide awake. I thought that I would call Jim's sister Nedra who was sitting with Jim. He had his treatment at 10:00 so I knew she would have just been getting back into his room. So, my ears must have been burning because she was debating on whether she should call me. Yesterday I blogged that he was fed up. Well apparently after treatment and before she got in the room, they did not restrain his hands. He had had enough and decided to pull out his breathing tube and feeding tube. So, when she got there they were putting them back in him. This is a big deal because they inflate a balloon at the end so the tubes stay in. Pulling the breathing tube out could have caused much damage. I was very worried about bleeding (because platelets are low) and very worried about damage especially to his vocal chords. They knew right away that his vocal chords were ok because he was screaming at them and demanding they call his wife. Apparently he did not think they were giving him good enough care. We are lucky because there does not appear to be any damage and bleeding was minimal. Nedra said after that he was very agitated and did not sleep any more than 20 minutes. Poor Nedra!
Since I have been here at 9:00 he has done nothing but sleep. Magic! Give him something for his anxiety, put his ventilator settings to help him be comfortable and he will be an angel. I think the staff has been too caught up in ICU protocols and trying to wean him from the ventilator or his anxiety medicine. But, they forget he is a bonemarrow pt and has to breathe through a straw for 2 hours 3 x a day. It is exhausting for him to just exist right now.
So, I am going to rounds today and I think the staff is going to get a "come to Jesus" talk. The bonemarrow doctors were not happy at all and asked me to come. Up on the bonemarrow floor they give you whatever you need to be comfortable, but in the ICU if he says he can't breath they tell him he can it just doesn't feel like it. So, my priority is to convince them that they need to not worry about the protocols but give him "whatever" he needs so that he can get through these 3 more days of treatment. He is not a "protocol" case anyway. If he was agitated enough to pull out his tubes, they are not doing their jobs. Now they are not getting rid of his wife at all. Pity for them. It is interesting, sometimes I think that Jim did not always appreciate my feisty side, but now I know that he not only appreciates it but relies on it. He holds onto me and relies on me like I am his lifeline. I can't imagine how helpless he must feel. He is pretty mad at me though. I think he feels like I abandoned him last night. I told him if I could forgive him for scaring me to death this week, he could forgive me for going home. He smiled.
So, just got back from the meeting. The ICU staff did agree to take Jim off of "Ventilator Protocol" and increase his meds for anxiety. I found out that the tube he pulled out was pretty clogged with the RSV medicine, so it was probably a good idea he pulled it. Also, they are looking into giving him the treatment via pill or IV now that he has had several days worth of treatment. He gets another treatment at 2:00 and has 9 more after that. I really hope that he can get the medicine another way. Then they can begin to wean him off of the ventilator. The bonemarrow doctor told me he is doing so good bonemarrow wise that if he didn't have the RSV he would have been going home.
Jim's brother Bob who has been in Spain on a mission came home last night. He is on his way here to surprise Jim. That will be a fun surprise.
Today I AM THANKFUL FOR a connection with my husband and Heavenly Father that allows me to wake up at 2:00 in the morning when he is in distress. (At least I think I am thankful for that).
Since I have been here at 9:00 he has done nothing but sleep. Magic! Give him something for his anxiety, put his ventilator settings to help him be comfortable and he will be an angel. I think the staff has been too caught up in ICU protocols and trying to wean him from the ventilator or his anxiety medicine. But, they forget he is a bonemarrow pt and has to breathe through a straw for 2 hours 3 x a day. It is exhausting for him to just exist right now.
So, I am going to rounds today and I think the staff is going to get a "come to Jesus" talk. The bonemarrow doctors were not happy at all and asked me to come. Up on the bonemarrow floor they give you whatever you need to be comfortable, but in the ICU if he says he can't breath they tell him he can it just doesn't feel like it. So, my priority is to convince them that they need to not worry about the protocols but give him "whatever" he needs so that he can get through these 3 more days of treatment. He is not a "protocol" case anyway. If he was agitated enough to pull out his tubes, they are not doing their jobs. Now they are not getting rid of his wife at all. Pity for them. It is interesting, sometimes I think that Jim did not always appreciate my feisty side, but now I know that he not only appreciates it but relies on it. He holds onto me and relies on me like I am his lifeline. I can't imagine how helpless he must feel. He is pretty mad at me though. I think he feels like I abandoned him last night. I told him if I could forgive him for scaring me to death this week, he could forgive me for going home. He smiled.
So, just got back from the meeting. The ICU staff did agree to take Jim off of "Ventilator Protocol" and increase his meds for anxiety. I found out that the tube he pulled out was pretty clogged with the RSV medicine, so it was probably a good idea he pulled it. Also, they are looking into giving him the treatment via pill or IV now that he has had several days worth of treatment. He gets another treatment at 2:00 and has 9 more after that. I really hope that he can get the medicine another way. Then they can begin to wean him off of the ventilator. The bonemarrow doctor told me he is doing so good bonemarrow wise that if he didn't have the RSV he would have been going home.
Jim's brother Bob who has been in Spain on a mission came home last night. He is on his way here to surprise Jim. That will be a fun surprise.
Today I AM THANKFUL FOR a connection with my husband and Heavenly Father that allows me to wake up at 2:00 in the morning when he is in distress. (At least I think I am thankful for that).
Tuesday, March 23, 2010
Day 12 Post Transplant -21 days in Hospital
Still on the upswing. When I got here to the hospital Jim was pretty ticked. He got a feeding tube today to better regulate his medicine. Our boy is back because he is fed up. I don't blame him and that is perfectly ok as long as he keeps fighting. He has 12 more RSV treatments to go. He gets 3 a day so he should be done on Saturday. After that they will wean him from the ventilator. So, I am hoping if all goes well he can be back up to the bonemarrow floor next week.
The treatments cause him much anxiety so he lays there watching the clock. Poor Guy. They can give him meds to help with the anxiety, but they won't sedate him. He has started writing his needs on a pad of paper. I am saving the sheets to show him later because it looks like something a second grader has written. Pretty cute. His sister is staying with him tonight and my Dad will go in the morning so he doesn't have to be alone. He doesn't like me to go and boy does he lay on the guilt trip. My only saving grace is that he most likely will forget everything that has happened in the ICU. I hope he does anyway.
One thing that makes him happy is hearing his kids talk to him on the speaker phone. I keep telling him to keep his eye on the prize. He listens to their voices intently and beams.
Today I AM THANKFUL FOR people who sit with my husband so I can sleep, friends who deliver groceries to my kids, friends who bring food and friends that show up at my house who clean and do laundry. I am in awe. Boy do I owe alot of service when this thing is all through.
The treatments cause him much anxiety so he lays there watching the clock. Poor Guy. They can give him meds to help with the anxiety, but they won't sedate him. He has started writing his needs on a pad of paper. I am saving the sheets to show him later because it looks like something a second grader has written. Pretty cute. His sister is staying with him tonight and my Dad will go in the morning so he doesn't have to be alone. He doesn't like me to go and boy does he lay on the guilt trip. My only saving grace is that he most likely will forget everything that has happened in the ICU. I hope he does anyway.
One thing that makes him happy is hearing his kids talk to him on the speaker phone. I keep telling him to keep his eye on the prize. He listens to their voices intently and beams.
Today I AM THANKFUL FOR people who sit with my husband so I can sleep, friends who deliver groceries to my kids, friends who bring food and friends that show up at my house who clean and do laundry. I am in awe. Boy do I owe alot of service when this thing is all through.
Monday, March 22, 2010
Day #11 Post Transplant (20 days in hospital) Possible Engraftment
Last night after much personal debate, I decided after not being home since Tuesday night that I would go home and see my kids and get some sleep in a bed. I felt like we were on a stable course and he was more aware. Jim's sister sat with him in between treatments from 9 Pm - 2:00 Am and then he went to treatment and my Mom came and sat with him after his treatment from 5:00 Am to 10:00 AM. That eased my mind so much because I just don't want him to be alone and afraid. He likes to have someone there to hold his hand. It kills me he has to be alone during his treatments, but that I can't control but I can control the rest of the time.
Today we are definitely on the upswing. The doctors think he has engrafted which means the new marrow is making cells. That is pretty early. Normally engraftment does not happen until day 14 - 20 and they usually will suppress that to prevent graft vs. host disease, but at this point it is good he is engrafting because that will give him some immunity to fight this RSV off. He still has a breathing tube
and has some ventilator support. He actually stood and walked to the nurses station today. Doesn't sound like much but is HUGE.
Tonight, my brother is going to sit with him between treatments and then our friend Jimmy is going to take the morning shift. I am so glad he is more aware and that there are people willing to sit with him so I can actually sleep. It is also good for my kids to see me come home at night and see them off in the morning. I know these last 5 days have been very hard on them. I am sure when we pulled them out of school on Thursday to see him, they couldn't help but think it might be goodbye. They are amazing kids though. Last night when I got home at 8:00 (now remember I hadn't been home since Tuesday}, they had spent the day cleaning and doing laundry so I wouldn't have to come home to it. I walked in the door at 8:00 PM and they were in the kitchen together making French Toast. Neighbors had invited them to dinner so I guess this was a snack. Anyway, I came home to see them and take care of them but instead I was tucked into bed, Sarah rubbed my back and Nate slept with me. They have had much help from family and friends but it was good to see them pulling together to help.
Today I AM THANKFUL FOR Mom and Nedra who sat here with Jim last night so I could get some sleep, and for my kids who cleaned up so I wouldn't be stressed when I got home. Also, I am thankful for neighbors who thought to call my kids on a Sunday to come over for a "pity party" and some good food.
Just so you know I wasn't being rude when I called it a pity party. When Jim, Camille, and Andee all had cancer we would get together with our families and some friends and have "pity parties." There wasn't any pitying going on just alot of inappropriate cancer jokes, alot of laughing and alot of love. I miss those pity parties. Can't wait for another one.
Today we are definitely on the upswing. The doctors think he has engrafted which means the new marrow is making cells. That is pretty early. Normally engraftment does not happen until day 14 - 20 and they usually will suppress that to prevent graft vs. host disease, but at this point it is good he is engrafting because that will give him some immunity to fight this RSV off. He still has a breathing tube
and has some ventilator support. He actually stood and walked to the nurses station today. Doesn't sound like much but is HUGE.
Tonight, my brother is going to sit with him between treatments and then our friend Jimmy is going to take the morning shift. I am so glad he is more aware and that there are people willing to sit with him so I can actually sleep. It is also good for my kids to see me come home at night and see them off in the morning. I know these last 5 days have been very hard on them. I am sure when we pulled them out of school on Thursday to see him, they couldn't help but think it might be goodbye. They are amazing kids though. Last night when I got home at 8:00 (now remember I hadn't been home since Tuesday}, they had spent the day cleaning and doing laundry so I wouldn't have to come home to it. I walked in the door at 8:00 PM and they were in the kitchen together making French Toast. Neighbors had invited them to dinner so I guess this was a snack. Anyway, I came home to see them and take care of them but instead I was tucked into bed, Sarah rubbed my back and Nate slept with me. They have had much help from family and friends but it was good to see them pulling together to help.
Today I AM THANKFUL FOR Mom and Nedra who sat here with Jim last night so I could get some sleep, and for my kids who cleaned up so I wouldn't be stressed when I got home. Also, I am thankful for neighbors who thought to call my kids on a Sunday to come over for a "pity party" and some good food.
Just so you know I wasn't being rude when I called it a pity party. When Jim, Camille, and Andee all had cancer we would get together with our families and some friends and have "pity parties." There wasn't any pitying going on just alot of inappropriate cancer jokes, alot of laughing and alot of love. I miss those pity parties. Can't wait for another one.
Sunday, March 21, 2010
Day #10 Post transplant
Today has been a fairly good day. I was able to get a couple of hours of solid sleep so I feel much better. I have slept here for 4 nights in a row and they kick me out for 3 hours each time he gets a treatment, so I am trying to decide what to do tonight. I don't feel like I can totally leave him alone because he still gets a little confused.
Today was about the same as yesterday. He is still on the ventilator but gets removed from it while he gets his RSV treatment. Which is actually terrible because he basically has to breath through a straw for 2 hours with no ventilation support. They can't give the treatment through the ventilator but he needs both the ventilator and the treatment. So, they compromise. So during the treatment his respirations, blood pressure, heart rate all go through the roof. On top of that no one can stay in the room so he is alone and anxious during that time. It wears him out. He is however lucid today and stood at the bedside twice. He can't speak with the breathing tube so we are having to come up with all sorts of sign language. Earlier he was getting a treatment and I looked at him through the window. He saw me and I guess signed I love You. I didn't know that one so I thought he was giving me the hangloose sign. (funny). Any chance he gets he holds on to me with a death grip. It is pretty cute. I guess he still likes me.
Anyway, I feel like we are making subtle progress. I guess as long as we are not moving backwards, I am good.
Today I AM THANKFUL for the sweet tender hugs and death grips he has on me.
Today was about the same as yesterday. He is still on the ventilator but gets removed from it while he gets his RSV treatment. Which is actually terrible because he basically has to breath through a straw for 2 hours with no ventilation support. They can't give the treatment through the ventilator but he needs both the ventilator and the treatment. So, they compromise. So during the treatment his respirations, blood pressure, heart rate all go through the roof. On top of that no one can stay in the room so he is alone and anxious during that time. It wears him out. He is however lucid today and stood at the bedside twice. He can't speak with the breathing tube so we are having to come up with all sorts of sign language. Earlier he was getting a treatment and I looked at him through the window. He saw me and I guess signed I love You. I didn't know that one so I thought he was giving me the hangloose sign. (funny). Any chance he gets he holds on to me with a death grip. It is pretty cute. I guess he still likes me.
Anyway, I feel like we are making subtle progress. I guess as long as we are not moving backwards, I am good.
Today I AM THANKFUL for the sweet tender hugs and death grips he has on me.
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