New Year's Eve - 7:30 am

Ken is really wired up. He now has 12 bags dripping into him of different meds. He has 2 extra IV lines, one for pulling blood to check his Oxygen and CO2 level, the other for more meds. He has 2 neuro strips on his forehead to check his level of paralysis. Plus the chest tube which is now draining again. The chest tube helps keep his lung inflated. Plus the huge tubes attached to his trach for the Oscillator. It has 4 tubes. Ken has wires everywhere. But his color looks good. His vitals are stable again. 83 heart rate, 95 oxygen level, 134/72 blood pressure. They gave him 2 units of blood already this morning. He usually swells up with fluid when they give him blood, so we'll see what happens today. They said he was low on fluid anyway, so hopefully it won't hurt him today. His poor hands are already swollen way up. I am wearing his wedding ring to keep it safe for him till he can wear it again.
Melissa was his nurse yesterday. She knew a lot about the oscillator. I was glad she was here. Becky was here last night and she will be back tonight. She is an intern getting her masters in nursing. But she also knew a lot about the oscillator. Today we have Matt. He seems through and has been very helpful on the floor. I just don't think he has ever been assigned to Ken. The oscillator is sort of new to him. But I could tell during report that he seemed to understand all that Becky was telling him. The nurses don't have to stay in the room every minute with Ken on the oscillator, but they do. It isn't required, but I appreciate that they are staying in here. This machine is sort of overwhelming. Matt and I were just saying that the rhythm of it reminds us of the movie, "Weekend at Bernie's". And it makes Ken jump in his chest, kinda like Bernie did at first before he started to get up. I'm going to have to watch that movie again with Ken when he wakes up. We both liked that movie.
So today's goals are to keep Ken comfortable, to keep his sedation at a steady level, to keep his stats even, but to start to ween the oxygen input on his oscillator. He started at 100% yesterday. He came down to 95% at the end of the day shift, to 90 and then 85% during the night. They just turned him down to 80% 30 minutes ago. The oxygen level in Ken was 95%, when they turned the machine down to 80% input, he only dropped to 93%. That is great. The lower they can get the input down with Ken staying above 90% the better. He hasn't had a fever for over 24 hours, so that is good too. He did get Tylenol this morning with his blood transfusion though. That is standard procedure.
Matt is funny. He is doing all his nursing stuff, changing tubes, checking stats, checking machines. But he bounces, or shakes his head, or taps his foot, or even whistles a little to the beat of Ken's oscillator. I don't even think he realizes he is doing it. He just tapped his fingers like a drum on the table. He seems so serious about his tasks, but throws in the rhythm, so I know he is in tune with Ken's machine. Matt is a very polite southern gentleman. He says "yes mam" to me. so I probably shouldn't be talking about him, though he would probably laugh with me.
My Uncle Stan and Aunt Leah say I have to be happy and joyful around Ken. That I need to praise God for the gift of him and turn his healing over to God. I am doing just that. I told Ken about the beautiful moon this morning when I was driving in. I told him what a good job he is doing and that we are fighting this together. I'm right here with him as I know you are too. I feel much better today. I hope Ken feels better too. It must be a relief not to fight with the machine as he was doing yesterday before the changed him to the oscillator.
The doc just came in and showed me his x-rays. They haven't changed. But placement of everything looks good, so now we just wait for Ken to heal. He said he would keep him on this oscillator at least thru the weekend. Then we'll see if he is ready to go back on the other one.
Hope you have a great day. Stay safe for the holiday. Happy New Year.
Bev

Dec. 30th, Ken on Oscillator.

Ken's doctors decided to go ahead and put him on the oscillator today. They are doing it now. Everyone is moving pretty fast. I will start at the top. They have a brain monitor on his head so that they can monitor his brain activity and make sure that Ken is not in pain. They have given him medication to paralyze him while he is on that oscillator. He will need to be totally supported by the new vent, he will not be able to move with it at all. So they have installed a new line in his arm so that they can monitor his blood gasses every 30 minutes to make sure his oxygen and CO2 levels are ok. They need to make sure they have him completely sedated, they check that also with the brain wave monitor.

This is scary. I hope he can get thru this. So this is what I was told this morning by the docs. The oscillator will not cure him. They are still waiting for the steroids to hopefully do that. His lungs are heavily damaged and the oscillator should give him relief from breathing so that his lungs don't have to work so hard while he is trying to heal. No idea how long he will be on this machine.

The machine itself is very loud, so I won't be sleeping here. At least they didn't have to take him to the ICU department as they first said. The docs wanted to keep him here instead of sending him down to the real ICU. I am grateful. At least all the nurses know him here. They don't all know how to manage the oscillator, so they are taking crash courses to learn it. They tell me it is easy to learn. I hope so.

Right now his blood pressure is showing really low. Freaking me out. I probably shouldn't be watching this. I am trying to blog instead of watching. I hope they get him stable again. So, as I was saying, the machine won't cure him. The Oncology doc said that they occasionally see this kind of damage to the lungs after chemo. Usually a few months after. So for it to happen so quick and so severe, they are surprised and somewhat baffled. They haven't ever had anyone with this much damage from the chemo. Or at least that is what they alluded to. So they are as worried as I am.

The docs also warned me today... the tough side effect with this oscillator is the paralytic drugs that they give him. He is already on steroids that are breaking down his muscle mass. The paralytic drug just compounds it. The drug works to stop his nerves so he won't move, so the recovery from this is going to be a double whammy, incredibly tough. But he can do it. The doc said this morning that it may take him a month to recover and come off the ventilators. Then the rehab will be 3 to 5 months after that. So he will be in the hospital or up on the rehab floor all that time. I am just in a daze. I can't believe all that is happening. At least they are finally telling me what to expect. (His blood pressure is fine now. It was the line placement, not Ken. He is stable now. Sort of.)

They will be checking his blood gases every few minutes and adjusting the machine while it gets to the right settings. It is different with every person, so it takes a bit of testing to get it right for Ken. So did I say the machine is loud. It sounds like a motor from the 1950's. There is a drum that is constantly turning. That is what it sounds like, an old clothes dryer that is out of balance. The tubes are attached to his trach in his throat. They are inflating his lungs at a constant rate. His little chest is just vibrating very rapidly. Maybe that will break up the pneumonia crud and get it out of him, though I am not sure there is crud in there.

I can't write any more now, so I'm going to go get a salad. Please keep praying for him. I know you are and so am I. I decided to give up the stupid romance novels and go back to my bible instead. God Bless all of you. Love you, Bev

PS. I am planning, if today goes well, to be in Fort Collins tomorrow to work and start setting up for rush. I know it's a holiday weekend, but if anyone is brave enough to visit over the weekend, please feel free. As long as you are completely healthy. It is too quiet just sitting here. I have plenty of things to do, but would like the company. Then, if he is staying strong, I am hoping to work at least next Monday and Wednesday. Maybe more, maybe less. I just need to take it one day at a time for now.

December 29th.

It is Tuesday and Ken's mom just left to go back to Fort Collins. I actually went to Fort Collins yesterday to check on some things at work and to bring Ken's mom up this morning. It was hard to leave Ken, but it was good to get some stuff done at home. I am now sitting with Ken alone. He doesn't look very peaceful today. His heart rate is up again, 135. His blood pressure is 121/60. He is breathing pretty fast. They just took his temp and it is 102.6, so they are doing more blood cultures. Every time it gets over 101.5, they do cultures just to see if any infections show up. They haven't. He isn't getting any better. He isn't getting worse, at least that is what they tell me. But he looks more uncomfortable today.

I know you guys want to hear what is happening, but it is so hard to blog when he is just staying the same. They adjusted his sleep meds over night. He is almost off of propovol, the one he likes. Guess you can't be on that for very long. So now he is on it, plus 3 other meds for sleep. He has 2 meds for anxiety that also help him sleep. He is still on high steroids and antibiotics.

So his pulmonary doc mentioned today that they might have to put him on an oscillating ventilator to give Ken more support. He said he would be back this afternoon to talk to me about it, but I haven't seen him. The nurse said that with that kind of ventilator, they would have to move him down to the actual ICU unit, not the BMT ICU unit. I am so scared. He just doesn't seem to be getting any better. I have a call in to his regular oncologist to start asking some tough questions. I don't even really know these pulmonary guys. I know the oncology guys are very highly rated, but what about the pulminologists. And who really is making the decisions for Ken at this point. I a don't know if I should be calling around to other doctors. I learned in Fort Collins, not to totally trust doctors, so it makes me scared now. His fever broke while I was writing this. It is now 99.6. But he still looks so weak. He is breathing a little smoother. But that changes so quickly when they move him, or his fever spikes.

I will write more when I learn more about the doctors plans. I am trying to hang onto hope. I know the Lord is with us. I just wish He would speak up and tell me that Ken is going to get thru this. It's quiet and lonely here without Ken talking to me. I miss you all. Look for a post tomorrow after I talk to the docs.

Oh yeah, and thanks to all of you that offered to help get Ken's mom here. I've had quite a bit of family here, so we worked it out. I appreciate your offers though.

Bev

December 26th. Quiet day.

It is Saturday, December 6th. Quiet day. I arrived at the hospital at 6:30 am. Ken was still very sedated. He had kind of a rough Friday evening. The nurses tried to lower his sedation, but he was very agitated every time he woke up. He is not liking his new trach tube. He tries to take quick breaths instead of the long slow breaths that the machine wants to take. So they say he needs more time. They have taken him almost completely off the long acting sedation and have him mostly on the propovol, the drug they had run out of, but now have plenty. It seems to do the trick. Except this morning, I went down to the cafe for a minute to get breakfast. When I came back up, I could hear one of his beepers going off. I looked in the room and his eyes were wide open. I quick put on my paper gown, gloves and mask and entered the room. Ken looked at me as the nurse came in to check his drips. The propovol that keeps him asleep had stopped and he was awake. I talked to him, asked him if he was in pain. He shook his head just barely, no. Then I asked him if he was scared and he barely shook his head yes. The nurse and I both told him that he was getting better and that he was going to be ok. He started to cry and it broke my heart. He scrunched up his face and big tears came out his eyes. I was crying in my mask right along with him. I told him not to worry, that he just needed to rest some more. He finally closed his eyes and went back to sleep. The nurse said the propovol is very fast acting, but it also stops fast. He has been asleep every since. They have added some adavan and haldol drugs to his regiment today. They are both for nerves among other things. We are hoping that it will help him be calm when they wake him up. They also gave him some more lasix which gets rid of water. His arms are really swollen, but his legs are very thin. One of the drugs they gave him, probably the lasix made his blood pressure plummet. Really low, like 67/45. So now he is on a blood pressure medicine too. This is all so scary for me. It is so quiet in the hospital and he seems to be getting so much weaker. He didn't even squeeze my hand today. They are waiting 12 hours and will try to lower his sedation again. I think I will try to spend the night with him so I will be there if he wakes up. This is the hardest thing I have ever done.

Our Christmas was sad because Ken wasn't with us. But nice too. I spent the morning and most of the afternoon with Ken. Katy and Mark visited Ken at lunch. Then his sister from Calif, Cathey, came to visit right after lunch along with his sister from Colo Springs, Lisa. They just stopped for a few minutes. They were on their way to Fort Collins to see Ken's mom. As soon as they left, I headed over to my son's house in Golden where we exchanged gifts and had a wonderful dinner made by the kids. Katy, Mark and Norah were there as well as Jeff and Sara, Stephanie and Joe and also Tessa. We skyped with Anna in New York too. She watched all the gift exchange and had saved her presents to open with us as well. It was weird not to have Ken with us, but we made the best of it. Sara took a bunch of pictures, so Ken will be able to see the gifts as well. I decided to go home to Staybridge and try to get some sleep. I should have just gone to the hospital. I didn't sleep very well without Ken. I am planning to stay with him tonight. We'll see how he does.

So something else weird happened today. I have been reading a book this week. I always read a Christmas story during Christmas. This time I decided to go for a light romance book. I am reading Santa in a Stetson. About a New Mexico rancher and his new wife. Simple enough. Well, I was reading in Ken's room this morning, and I was on page 281, almost done with the book. When suddenly, the rancher woke up with a fever. They took him 50 miles to the nearest hospital. He is in the ICU, on a respirator, with some kind of extreme pneumonia. Can you believe it? They don't know what is causing it. Took close to home. I had to put it down, so I will have to finish the book tonight and see how it turns out. Of course, he is the hero, so you know he will make it. My hero better make it too.

I'm feeling kind of sad, and I am currently over at Katy and Mark's condo they are staying in. I am going to play with Norah for another hour and then head to the hospital. Hope you are having a good week.

For those of you that want to help me, I need to start thinking about what I will do next week if Ken is still in the hospital. I want to work for a couple of days. I may want someone to sit with Ken. I have 1 volunteer, but if anyone else wants to spend time with him, just let me know. I'd like a relief schedule. I am also wanting to get Ken's mom up to Denver to see Ken on Tuesday morning. I can go get her and take her back, unless someone else wants to bring her up for me. Katy and Mark are leaving tomorrow to go skiing. They will be back Monday night, so Elaine could see them also Tuesday morning.

Baby time. Gotta Go.

Merry Christmas Eve

Hi everyone. Ken is doing fine today. He is still sedated, but seems comfortable. They are slowing down his steroids, so we are officially on the down side again. They are going to take him down slowly, but he came down 20% today. They are talking about waking him up soon. Maybe as early as tomorrow, but for sure over the weekend. I was actually able to talk to him today and he opened his eyes and looked at me. He doesn't usually do that. He will not be able to talk to us until he is off the respirator and that will be a while, but he should be awake enough to know we are here and to be able to move around a little.

So this is for Ken....
Ken, I told you about this when I got here today, but you might not remember, so I wanted to put it in the blog so I don't forget. It is Christmas Eve and I miss you. I stayed at our apartment last night and left at 6:30 this morning to come and visit you. It snowed all day yesterday and over night. The sidewalks at the hotel were covered with the softest fluffy powdery snow that I have ever seen. You could literally blow it off the car. It was amazing. But what I shared with you this morning was how much the snow was glistening, just like in the Christmas songs. It was beautiful. It was like there were little diamonds thrown all around the yard. I've never seen it sparkle so vibrantly. Wish you had been with me. We would have taken time to stop and enjoy the moment. I enjoyed it for both of us. I am taking that as a sign from above of all things beautiful and that we are looking forward to a beautiful life together. I know you will be well again soon. We will be able to look back on this Christmas as our most challenging. All the Christmases to come with the stress and the family issues and the challenges of getting everything done, will pale in comparison. We will be thankful for each New Christmas and will enjoy them all together. I love you Ken. I am off to play Santa and to hit the mall just one more time. I figure it is what you would be doing this afternoon, so I'll be taking you with me in spirit. Sleep tight baby. I'll talk to you soon. Bev

To everyone else, I hope that you are finding time to enjoy the holidays and forget the stresses that come with them. Love everyone around you this Christmas. Give praise to God for giving us such a Blessed Holiday as the Birth of Jesus to celebrate. Have a wonderful Christmas eve and a fabulously Blessed Christmas.
Love you all. Bev and Ken

Surgery went well, trach is in

Ken had a trach put in this morning just below his throat. The doctors were able to do it at his bedside, so they didn't have to cart him clear over to the OR. He seems so much more comfortable now. Just looking at him without that big tube in his mouth is easier for me. I hope it is better for him too.
The hospital found some propovol yesterday afternoon and started Ken on it. He had a restful night. His lung doc that sedated him made a point to come and tell me today that I was right. Ken likes the propovol best. He is sedated with a minimal of pain meds now. So all is good. I guess they had taken all the propovol away from other patients to give it to Ken when they knew they were running out. And now that they have found some more, they are hoarding it for Ken. I hope they keep finding it.
We had a new development today. Ken has an air bubble in his left lung cavity. So while they had him sedated for the trach, they also inserted a chest tube to let the air out. They don't seem to be to worried about it yet, but didn't waste time getting the chest tube in.
I wish I had more to tell you. He is resting. I am better today. I got a baby fix with Norah last night. It was fun to see Katy and Mark and be able to play with Norah. They are in Colorado Springs today at the funeral of one of Katy's friend's mother. She died expectantly, so Katy and Mark went down to support her friend today. My condolences to to Amber and her family.
Hope everyone is enjoying and staying safe in the snow. Have a great day. Bev

Ken is tough

It is Tuesday, almost lunch time. I have been talking to doctors and family all morning. We have a new lung doctor this week. She saw Ken yesterday and today. She is an associate of Dr. Clark, so she has been aware of Ken for a while. Today she is suggesting that we insert a tracheotomy in Ken to give him relief from the standard respirator. I have been so confused. So let's start back a ways and see if I can make sense of all this for you.
Ken has had a battery of tests, blood test, lung washes, biopsies in surgery, all kinds of things they are checking. He has only so far had 1 test come back with positive rhino virus (common cold) and Dec 3rd as positive for a fungal infection. But no other positives. So today, Dr. Matous, his oncologist, talked to me more about what Ken is going thru and what to expect. They suspect and are confirming by order of elimination that Ken's lung issues have been caused by the bone marrow transplant. Before when he was on the respirator, he responded well to the high dose steroids and that is typical for these kinds of lung issues. So, he responded, they lowered the dose and got him off the respirator. Then he was sort of ok, but slid back and was having trouble breathing again. He stats went up and they had to put him back on the respirator. You know all that. But today, Dr. Matous is telling me that this time, they are putting him back on high dose steroids and they expect and hope that he will again respond well to them. But this time, they are going to be slower about bringing him back down off of them. They will go at a much slower level, so he will be incubated on the respirator for quite a while longer. I said 2 days, 2 weeks, 2 months??? The doc said not 2 months, but maybe 2 or 3 weeks. Wow, that is hard to wrap my brain around. He is not very comfortable like this. However, they just found some more proprovol and have hooked it up. So they can get him off some of those other pain meds that they were using to sedate him. He should do better on proprovol. Yeah. So, back to what they are going to do next. His lung doctor, suggested that we put in a tracheotomy for Ken. She said they don't usually do it till day 14 - 21 in respiratory patients. But since Ken was on the vent for 8 days before and this is day 3 this time, and it looks like he will have to be on it for quite a while, they think it best to put it in earlier than later. So why the trach? With it instead of the respirator that is down his throat, they will still be able to control his breathing and help his lungs. It will still be a respirator breathing for him, just thru the trach instead of his mouth. He won't need as much sedation, he will be able to learn to talk (though not right away) and he will be able to work with physical therapy. If we left him on the respirator, he wouldn't be able to talk, there is some risk of the longer the tube is in, it could damage his vocal cords and his trach tube could swell and become infected. Plus, off the respirator and onto the trach is more comfortable for the patient. Things move fast here. They just sent the surgeon into talk to me and explain the procedure. They are considering doing it at his bedside this afternoon. So, it is my decision. Wow, how do I know what to do. I couldn't make this decision alone, so I called Dr. Weyant, his surgeon from Univ of Colo hospital. Dr. Weyant did Ken's thoracic duct ligation in April and Ken and I trust him. I wish he were taking care of Ken now. But I talked to him twice on the phone this morning and he agrees that this procedure would be the best for Ken. He says that with the trach, Ken would actually be able to breath easier and when he starts to breath a little on his own, it would be easier. So he would probably get off the vent a little faster. He also told me to be encouraged that since Ken was able to get off the respirator once before, he should be able to do it again. It may take a few weeks, but he should be able to get thru this. Let's hope so. I just feel like we keep sliding backwards because they keep putting his recovery back farther. I now have to learn to look at the whole picture. And that picture is that I want Ken to heal and come back to us. It shouldn't matter how long it takes.
I am a little scared as to what it will mean for me. Ken hates to wake up and not have me here. I realistically don't think I can stay here 24/7 for 3 more weeks. Can I? Will I be able to do that and not go nuts? That is so minor compared to what Ken is going thru. I feel so selfish thinking like that, but the counselors here keep telling me to get out and do things for myself. I want to see Norah when she gets here tonight. I can't wait to see her.
So, I am going out to lunch while Ken is still asleep. I need to check into my new hotel. They are doing the procedure later this afternoon. Then we will see what happens after that. I hope they will keep him comfortable and sedated for a day or so while he gets used to the new trach breathing for him. Then I hope he understands when they wake him up what is going on. I just want this to be a step in the right direction. So I will let you know how it goes. They are going to do it in the room, so I guess I get to watch. Maybe not. They are going to use the same incision they used in March for his biopsy, so there won't be 2 scars. I'll blog again tonight to let you know how it went. Till then, hope you are eating some fun Christmas cookies. Enjoy your day. Bev