I Can Almost Rest Now...
Without getting too bogged down in details, I wanted to share a moment of relief and celebration I am having all by myself in Marian's hospital room at 12:40 in the morning.
As you already know, Marian has pneumonia in both lungs and has really been struggling the last couple of days. She has no appetite. She feels bad. She's weak. And she struggles with shortness of breath if her flow of oxygen is interrupted for even five minutes.
Today she was seen by a pulmonologist. He is going to do a bronchoscopy first thing in the morning. And he talked to Marian about using a bi-pap machine to improve her breathing and oxygen level. She had already tried it very briefly (after it was recommended by the emergency response team). She insisted that she could not possibly wear the mask. The air flow was so strong that it made her feel like she was being smothered. Dr. O even told her that she might wind up in ICU if she refused to use the breathing machine, but he wouldn't force her to do it. And she still didn't want to. We all tried talking her into it at various time today, with no success. It obviously scared her.
Tonight after everyone else left, the lead person on the night shift emergency response team came in and talked to her again. Afterward, I walked out to the nurses station and spoke with her so I could ask a few more questions privately. She really leveled with me about the seriousness of Marian's pulmonary problems and how she could take a very sudden and drastic turn for the worse at just about any time, necessitating a move to ICU and being put on a ventilator. But if she would only use this machine, she could possibly avoid that. She told me she sees so many patients resist using it until it's too late and they have to be taken to ICU. She really believed Marian could avoid ICU by using the bi-pap machine. But she wasn't sure how long she would have the opportunity. I got the impression that this might be the last night Marian spent in a regular room without the breathing machine.
So I went back to the room and tried one more time to talk to Marian about using the bi-pap. I even asked if she would please do it for me. I told her I was so worried that she wouldn't have this option much longer if she kept refusing. And she finally said, "Okay. I'll try." They gave her a little Ativan. She fell asleep. And when the cardio pulmonary tech came to get her started, she barely seemed to notice the mask at all. She was so relaxed that she did not resist the air flow. And even when she occasionally reaches up and starts to tug at the mask in her sleep, I just say, "Marian, don't touch the mask" and she stops immediately. She is sleeping soundly and having no problems. She has been wearing the mask for over an hour. And in the first thirty minutes alone, her oxygen level went up to 99%. I was told that by using this machine she would also strengthen her lungs for tomorrow morning's procedure.
The night nurse came in to check on her a few minutes ago and was very pleased with how well she's doing. I can't begin to tell you how tired I am, but I am so excited about this that I am wide awake. I also want to stay up a little longer and watch her to make sure she doesn't accidentally pull the mask off in her sleep.
I felt very stressed a little earlier this evening. But I feel so good right now.
There are only a few people close to me who really understand how much pressure I put on myself as a caregiver. I expect perfection. So, of course, I continually disappoint myself because I'm far from perfect. Rebecca told me tonight that I don't show myself enough grace. I love her so much. She prayed for me on the phone and when we hung up, I felt so thankful for her and our relationship. I think God knew I needed someone to say to me, "I get it. I understand." And I probably just needed to cry. During the few hours I was gone, I felt so emotional.
I have spent countless hours learning about CLL, the complications of CLL and the treatment options for CLL so that I can "do something" helpful in a situation where one often feels totally helpless. My world is filled with other cancer patients and caregivers these days because of the online communities I have become a part of since John's diagnosis. Some of those online friends are also sitting in hospital rooms with loved ones or lying in ICU beds themselves tonight. I know they understand the stress I feel and the reasons I am here instead of home in my own bed. I'm not here out of duty. I'm here because I want to be. Because it makes me feel like I am "doing something" to help.
Tonight wound up being a night of personal celebration for me. I am celebrating all by myself every time I look at the clock and Marian is still resting comfortably while on this breathing machine. I helped her make the right decision. And that feels really, really good.
It is now 1:30 a.m. and she is approaching two hours on a machine they said would benefit her if she only used it for one hour. I think I can probably lie down now and get some rest myself.
As you already know, Marian has pneumonia in both lungs and has really been struggling the last couple of days. She has no appetite. She feels bad. She's weak. And she struggles with shortness of breath if her flow of oxygen is interrupted for even five minutes.
Today she was seen by a pulmonologist. He is going to do a bronchoscopy first thing in the morning. And he talked to Marian about using a bi-pap machine to improve her breathing and oxygen level. She had already tried it very briefly (after it was recommended by the emergency response team). She insisted that she could not possibly wear the mask. The air flow was so strong that it made her feel like she was being smothered. Dr. O even told her that she might wind up in ICU if she refused to use the breathing machine, but he wouldn't force her to do it. And she still didn't want to. We all tried talking her into it at various time today, with no success. It obviously scared her.
Tonight after everyone else left, the lead person on the night shift emergency response team came in and talked to her again. Afterward, I walked out to the nurses station and spoke with her so I could ask a few more questions privately. She really leveled with me about the seriousness of Marian's pulmonary problems and how she could take a very sudden and drastic turn for the worse at just about any time, necessitating a move to ICU and being put on a ventilator. But if she would only use this machine, she could possibly avoid that. She told me she sees so many patients resist using it until it's too late and they have to be taken to ICU. She really believed Marian could avoid ICU by using the bi-pap machine. But she wasn't sure how long she would have the opportunity. I got the impression that this might be the last night Marian spent in a regular room without the breathing machine.
So I went back to the room and tried one more time to talk to Marian about using the bi-pap. I even asked if she would please do it for me. I told her I was so worried that she wouldn't have this option much longer if she kept refusing. And she finally said, "Okay. I'll try." They gave her a little Ativan. She fell asleep. And when the cardio pulmonary tech came to get her started, she barely seemed to notice the mask at all. She was so relaxed that she did not resist the air flow. And even when she occasionally reaches up and starts to tug at the mask in her sleep, I just say, "Marian, don't touch the mask" and she stops immediately. She is sleeping soundly and having no problems. She has been wearing the mask for over an hour. And in the first thirty minutes alone, her oxygen level went up to 99%. I was told that by using this machine she would also strengthen her lungs for tomorrow morning's procedure.
The night nurse came in to check on her a few minutes ago and was very pleased with how well she's doing. I can't begin to tell you how tired I am, but I am so excited about this that I am wide awake. I also want to stay up a little longer and watch her to make sure she doesn't accidentally pull the mask off in her sleep.
I felt very stressed a little earlier this evening. But I feel so good right now.
There are only a few people close to me who really understand how much pressure I put on myself as a caregiver. I expect perfection. So, of course, I continually disappoint myself because I'm far from perfect. Rebecca told me tonight that I don't show myself enough grace. I love her so much. She prayed for me on the phone and when we hung up, I felt so thankful for her and our relationship. I think God knew I needed someone to say to me, "I get it. I understand." And I probably just needed to cry. During the few hours I was gone, I felt so emotional.
I have spent countless hours learning about CLL, the complications of CLL and the treatment options for CLL so that I can "do something" helpful in a situation where one often feels totally helpless. My world is filled with other cancer patients and caregivers these days because of the online communities I have become a part of since John's diagnosis. Some of those online friends are also sitting in hospital rooms with loved ones or lying in ICU beds themselves tonight. I know they understand the stress I feel and the reasons I am here instead of home in my own bed. I'm not here out of duty. I'm here because I want to be. Because it makes me feel like I am "doing something" to help.
Tonight wound up being a night of personal celebration for me. I am celebrating all by myself every time I look at the clock and Marian is still resting comfortably while on this breathing machine. I helped her make the right decision. And that feels really, really good.
It is now 1:30 a.m. and she is approaching two hours on a machine they said would benefit her if she only used it for one hour. I think I can probably lie down now and get some rest myself.
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