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

Monday, Dec. 21st

I can't believe we are doing this. Ken is having such a hard time. He is still sedated, still on the respirator. His stats look ok, his blood pressure is a little low, so he is on meds for that, mild doses. But, there is a nation wide shortage of proprovol, the drug that they were originally using to keep Ken asleep last week. It worked great, but now the hospital is out of it. I guess the country is out of it. Ben, my pharmacist nephew, can you get us some. Just kidding. Something about drugs going across state lines might get us in trouble there. But since they don't have that drug, they have him on 3 drugs, 1 is for sedation and the other two are for pain. These three drugs are supposed to keep him sedated. But I guess this evening while I was out to dinner, Ken just suddenly woke up. He started fighting the restraints and the breathing tubes. He was quite violent and it took the nurses almost an hour to get him calmed down and back to a comfortable sleep. They upped his meds. I saw the doc in the hall before I went to dinner and the doc said I was right, it took alot to keep Ken asleep. I had told him before they put him on the respirator that my concern was the lack of that drug proprovol. He assured me that they would be able to control his sedation. Well, now they have him on a higher dose, but they say they can't go much higher. So if he wakes up again, they may put him on a drug to paralyze him, temporarily. The drug will just keep Ken from fighting the respirator if he does wake up. When he fights the respirator and tries to breathe on his own, that definitely isn't good for his lungs. This all scares me. So 1 nurse said they might only leave him on the paralyzed drug for a few days. A more experienced nurse said they would probably only do it for a few hours so they could mess with the sleep drugs to get the right combination to make Ken stay asleep. They can monitor how deep he is sleeping by attaching a little electrode to his wrist. They would send small shocks thru the electrode and measure how much response Ken would have in his reflexes. Isn't that crazy? All this is so crazy. And scary. I hope and pray they know what they are doing. Ken seems peaceful now. I was going to go to the hotel tonight, but in light of Ken's possible waking up, I want to be here. I can't imagine him waking up and being with strangers. By the way, I am going to believe the more experienced nurse that said they would probably only have Ken on paralyzed drugs for a few hours. I know she said probably, but we can hope. And pray. Thank you for praying with me. This is so scary. But we are holding onto the fact that his stats are stable and he is resting for now. He must rest and heal. Heal and rest. Me too. I'm going to make my bed and stay here again tonight. I'll go to the hotel tomorrow night.
Sleep tight.

Sunday, Back on the respirator

Ken had a terrible night. His breathing just got worse and worse until we decided this morning that he needed to get some relief. So, the doctor did a bed side procedure where he washed Ken's lungs again to check for more infections. Then they incubated him again. They are working now to try to keep him sedated. The miracle drug they used last time is still not available, so they are using high doses of two other drugs to try to keep him quiet. Ken has a really high pain tolerance though, so he is fighting the machine and the drugs. I hope they will get it under control soon. He will be under sedation again for a few days, maybe more. I will try to write more when I know more. Till then, we pray.

We had a few good days. Anna arrived yesterday from New York. Ken had a tough overnight and morning, but when she got here Sat afternoon, he was better. He was able to talk with her and was only on regular oxygen. Linda and Ed stopped by and he knew what was going on. But overnight, his breathing got more shallow and fast. His lungs just couldn't do it any more. I am thankful that Anna had her time with him.

Jeff is here with me now. We are just watching the nurses. I wish it were next summer and Ken was all healed. This is so hard to watch.

What a difference a day makes! Day +24

It is so wonderful to be able to talk to Ken again. He was a little raspy at first, but seems to be fine now. He says he doesn't hurt anywhere. His mouth sores and throat have all cleared up from the chemo sores. He is on a puree diet, but he is eating pretty well. He can't quite control his hands enough to feed himself. He can raise his lower arms ok, but he has trouble raising his upper arms, so he can't quite reach his mouth. Ok, how many of you are trying to reach your mouth just by raising your lower arm? LOL You have to imagine you are propped in a bed. But I don't mind feeding him. I told him it was makeup for not getting to feed Norah since she lives so far away. I missed all that fun with her. Luckily I haven't made as much mess as I've seen Norah make. No puree peas all over his face. Though the pureed corn they gave him last night was formed like a corn on the cob. Amazing what formed soft food looks like. I think he liked his oatmeal better.

So the doctors talked to him this morning and told him a little bit about what he has been through. Ken asked him what he had to do to get out of here and said that he wants to be home by this weekend. The doc chuckled and said he is happy that he has a goal. But it is more realistic that we might be home by Christmas. That should make Ken work pretty hard at his breathing. The physical therapist is going to try to get him up in a chair once or twice today for an hour or so. I think he will be surprised at how weak he really is. They are lowering his steroids today, so that should help with the muscles. They told him he had to eat as many calories as possible. His breathing efforts are eating quite a few calories. I don't recall anyone ever telling me to eat as many calories as possible.

I better sign off for now. Gotta get come Christmas cards done in between feedings. He's going to want applesauce or pudding soon. Those Popsicles go down pretty smooth. Happy Thursday to everyone. Love ya. Bev

Noon, Wed. Off the Respirator

Finally, they took the respirator off Ken. He is doing great. His blood pressure and heart rate look good. His oxygen level is good. I am so happy. Thank the Lord. He already told me he loves me. I've been waiting days to hear that. He can't talk very well. His throat will be sore for some time. He will start with ice chips in an hour and if he tolerates that, he gets a Popsicle. That made him smile. The tube came out quick once they started. Ken said it was fast.
Just wanted you to know. I'm going back to Ken's bedside now. Thanks for your prayers. Bev

No changes yet

I cannot believe this has been almost a week. Ken is still struggling. They keep running tests on him every morning, but he isn't strong enough yet to come off the ventilator. I hate it. I know it is keeping him alive, but he isn't very happy. They have lowered his sedation meds so that he is awake during most of the test. We keep telling him to breathe slow and deep, but he has a hard time and his levels aren't high enough yet. At least they are giving him a little more sedation meds this afternoon, so he is sleeping. He has been vomiting (with the tube in, not pretty) since Sunday night. So they have stopped his tube feedings and are in fact pumping his stomach. He says he isn't hungry, but I don't see how he can be getting any strength if they aren't feeding him. I used to know more about what the nurses are doing and what is really going on, but this ICU Respirator stuff has me baffled. I'm sure they know what they are doing, but with our track record in hospitals, I'm a little nervous. I have been staying here most of the time now so that I can pay attention to what is happening. Plus, when he wakes up, he sometimes motions to me. I have to hardest time trying to figure out what he wants. We tried to let him write me a note today. He wrote warte. Do you know what that is? I should have been able to figure it out, but my scramble skills aren't there. He had written water. Course he can't have any water, so pour guy. Yesterday, it took me forever to figure out that he wanted the nurse. He kept pointing, and I knew he wanted me to get something. Thank God I finally figured it out. I had been telling him that I couldn't take out his tube. He wanted me to. So I guess he thought if I couldn't do it, the nurse could. Pretty smart. He is in there. He knows some of what is happening and I think he might remember some of this, now that he is more awake. But I hope it isn't to long till they can get him to breathing on his own. I miss him talking to me.
So not much else to report. The infectious doc was just in. He said he changed his antibiotics 2 days ago and they seem to be working better. He fever has been down for 24 hours. And he said the best fight against this will be his white blood cells. He needs strong ones to attach the fungus. He now has plenty of white blood cells, so I hope they are getting to work.
My brother from North Carolina is coming to see me tonight with my cousin from Boulder. I am looking forward to seeing them. I decided at noon today that I hate eating alone. It is lonely down in the busy lunchroom. I have to wear a mask in Ken's room, so I can't eat in here. That's been helping my diet, or lack there of.
Stephanie is coming to see me tomorrow, to go Christmas shopping. I hope we get to go. It will depend on what tomorrow morning's test looks like and if they pull the tube tomorrow. I want to be with him after they pull the tube to make sure it all goes ok. If anyone else wants to come and sit with him on Wed afternoon so I can go with Steph, that would be great. Jeff, are you well yet? You have to be healthy to come in the ICU. It's kinda boring in here with Ken sleeping so much. I've been getting my Christmas wrapping done though. This is a huge room.
Hope all is well with everyone and hope your Christmas stress is under control. Hug someone you love today. I'm sending hugs your way. I have an over abundance of them now since I can't hug Ken. I miss everybody. Have a happy day. Bev

Weekend Update

I so should have blogged earlier. Sorry, I have been on the phone all night sharing the good news. Up until this afternoon, there wasn't much change in Ken. But he is improving. We started with baby steps, but we may be taking big steps tomorrow.

The nurses turned off Ken's respirator for 2 hours this afternoon and Ken did great breathing on his own. Yeah. His vitals were stable and he tolerated it just fine. Then after that, they turned his sedation down, so he opened his eyes every time I called his name. I talked to him about every half hour. I just told him he was doing fine, that I loved him and that he could go back to sleep. He would then shut his eyes and sleep some more. At one point, I was skyping with Katy and Norah and Katy was talking to Ken. Then he opened his eyes and was about to start crying. I know he misses us too. But we quickly got him settled and back to sleep. That was this afternoon. I just called the hospital at 11 and the nurse said he nodded no when she asked him if he was in any pain. Yeah.

So the plan for tomorrow, is to turn down his sedation again early in the morning so he is more awake. Then they are going to turn off the respirator again for 2 hours at 8:00. If he tolerates that, they will wake him up more and put him thru some commands. If he does the commands they ask, they will take out the respirator. At least that is what the weekend doctor wants to do. I plan to be there early to talk to his lung doctors and his oncologist. I want to make sure they all are on board. But even if it isn't tomorrow, it will be soon.

So what are we still looking at? He is still running a fever off and on. So he will be on antibiotics for a while. His voice will probably be affected again. It is usually a problem for most respirator patients. The toughest thing for Ken will be his muscle function. We are looking at physical therapy. The high dose of steroids they gave him would have affected his muscles, so we will have to do some therapy. But he can do it. Poor guy. Just laying there while all this is going on. He is amazing. I just can't wait to talk to him again. Or listen to him, or see his eyes smile at me. I hope tomorrow goes well.

The weekend was ok. Friday was really long and horrible. But Saturday, my friends, Terry and Alan came and took me to lunch. Then Tessa, our youngest, showed up and spent the weekend with me. We had a great time, visiting with Dad and then Christmas shopping till late Sat night. We had some great girl talk, just what I needed since I miss talking to Ken so much.

Sunday, I visited my cousin, Gary and his family as they were leaving Children's hospital. Gary's new grand baby, Nicholas, had been there for a few days. He is safely home in Laramie this evening. Cute baby, 5 lbs. Hope he continues to get better.

I am definitely over my cold. I feel great. Amazing. That was a really fast cold. I know it was all your prayers. I'm just thankful that I am better before Ken wakes up tomorrow and needs me.

I better get to bed so that we can be ready for tomorrow. Thank you all for your support. This is going to be a great week. Ken just has to keep getting better. We still don't know what the infection was in his lungs. They think it was from the chemo drugs, but we may never know for sure.

Have a great week. Buyback is in full swing at the Bookstore and I miss being there. This is the weirdest December. Say hi to everyone there for me.

Till tomorrow....Bev

Dear Ken

Dearest Ken,
I remember the day before you were put on the respirator, the nurses made you take off your rings and your watch. You gave them to me and spent the rest of the day looking at your wrist and asking me what time it was. You had a big clock on the wall, but couldn't focus on it. Every time you asked me what time it was, you repeated that it was the longest day. Time was going so slowly for you that day. Well, I just wanted you to know that you were wrong that day. Today was in fact the longest day. I was kicked out of the hospital this morning because I was coughing. So I came back to the hotel room and worked on our Christmas project. I only called the hospital 3 times to check on you. I just kept looking at my watch and wishing the day would go faster so I could get over this cold faster. I wish I had been with you, but they were right. I need to get over this cold. I think it is almost gone. I feel so much better tonight. I haven't coughed but maybe twice in the last 6 hours. Let's hope it is gone by tomorrow. I miss you to much to stay away again.
I love you. I know the Lord is taking care of you and I know you will get thru this. So, when you read this, you'll know that I am missing you more than ever. Talk to you soon. Bev

No real changes

Ken is the same. They started to feed him yesterday thru a tube. It looks like yellow milk. Ken called it his banana milk shake last spring when he received the same stuff. They are moving him to his new room today in the new ICU unit. Changed to room 3409. His breathing is stable, but not yet ready to get weened off the respirator. There were no positive cultures that have come back yet. I'm still coughing, so I'm not allowed on the floor. I hate this. I miss Ken.

Thurs night

What day is this? I think it is Day +17. We have kind of lost track of the bone marrow transplant. I gave in and went to the hospital this afternoon for a few minutes. I was talking to his nurse about the fact that Ken isn't so much a cancer patient as he is a lung compromised patient. He has had an ok day. He is pretty heavily sedated and the nurse says that is making things quite a bit easier for him. His breathing looked less labored. He actually looked calmer, if that is possible. The x-ray this morning showed some minor improvement. Let's hope that continues. They are definitely moving Ken early tomorrow morning to the new wing. He will be in room 3410 which is the closest to the nurses station. I get the feeling Ken is the sickest on the unit. I can't imagine anyone worse. He is giving me a scare.
I am actually feeling much better. Sore throat is gone. Runny nose, not so much. I am coughing a little, but the cough syrup is helping that too. I feel way better tonight. I am hoping that my cough goes away by tomorrow. I haven't spent much time in Ken's room. I would like to tomorrow with him in his new room. The nurse won't be in there constantly since they will monitor him from the desk. I'd like to be there to see how that works. So I plan to be there early tomorrow to see the doctors. I completely missed them today.
I hope you have a peaceful night. I hope Ken does too. Bless you all. Bev

Juggling continues.

It is 4 am and Ken is doing a little better. He has 2 male nurses tonight and 1 is a new ICU nurse that seems to know quite a bit about the juggling act that needs to happen. They call it a balance. So now Ken's heart rate is in the high 90's, his blood pressure is better and his oxidization level is 99%. He is resting comfortably again. How did they get him like that? They first, upped his sedation so that he is more asleep than before. He was getting so agitated every time they touched him and it was taking him 45 minutes to recover, so that should help. They are giving him blood pressure meds, just 1 unit. John, his nurse, says that often times they give 20 units, so he is getting just a "whif". They upped his pressure on the respirator, so now they can turn down the oxygen going in from 85% last evening to the 50% now. That is much better for Ken. John said they were concerned about the higher pressure on the machine, but that it was more important at this point to get Ken's vitals stable so that he can get some more rest. They said he looks better this morning. Wish I could see him.
Unfortunately, all this will change. As Ken changes, so must the machines. And since Ken can't tell them anything about pain and such, they must balance the machines and meds to match Ken's needs. So they up his pain meds or lower his fluids or up his antibiotics or give him more steroids. It's all a balance as the pain meds wear off or his fever changes. Though I don't think he has had a fever in 24 hours. I forgot to ask about that.
So I wonder what Ken will think when he reads all this one day. At least he shouldn't remember the experience. Hopefully, he isn't remembering much.
We need to pray that the infiltration in his lungs disappears and goes away. So that he can start breathing on his own again. Poor guy. I feel so helpless.
I got some sleep. I slept from 9:30 till 3:30. And for those that know me, 6 hours straight is good for me. I am going back to bed. But I am going to call my doctor at 7 to see if he can give me any relief, or miracle drug to help me get over this cold. I need to be at the hospital at least by Friday. I hate that I'm not there, but at least he has a nurse with him all the time. They might move him on Friday to the new ICU unit. Over there, they won't have to stay with him every moment since they can monitor the machines from the desk. I don't want him to be alone, so hopefully, I can get a miracle cure and be able to stay with Ken again. At least during the days. I miss Ken. He just has to get better.

Another long day

I don't even want to blog tonight. But I know all of you want to know what is happening, so here goes. Ken is still in guarded condition. They are trying, but they can't seem to get his vitals to stay level. He had a tough day. He got upset every time they moved him. A patient in sedation, needs to be moved every now and then. He got really upset about 9 this morning and they haven't been able to get his heart rate down in the 90's since then. Either his blood pressure is too low or his heart rate too high, or his breathing is to labored. His xray this morning was extremely improved over yesterday, but they took another this afternoon and it wasn't as good. They think it is because of the amount of fluid they have been giving him. So they backed off, but now tonight, he is on 85% oxygen. This noon he was on 40-50%. They are trying to find a fine balance to make him comfortable so that he can heal. Hold on Ken. Time will heal this. You have to give them time. The doc said tonight that he is still guarded, but he is better than yesterday. I just talked to the night nurses and they are calling the doc to make adjustments yet again. I wish I weren't sick. I should be there talking to him. I hate this. I know I need to stay in bed and get over this cold. But I should be there talking to him. This sucks. They haven't found any infections from the cultures they took. They are still waiting for the long term stuff. They are continuing the steroids that seem to be helping him.
So there, I blogged. Sorry there isn't more good news. I miss Ken so much tonight. I hope I feel better tomorrow so I can go spend time with him.
Love you all. Good night. Bev

Healing Begins

Ken is much better this morning. His heart rate is down to 86. He is on only 50% oxygen from the respirator. His temp is down. He only needed Tylenol once on the night shift. They said the beginning of the night was touchy, but they started him on a drip of pain meds that give him more constant relief. Now that his temp and heart rates have dropped, he is finally getting the rest he needs to heal. When I left last night, he was on 100% oxygen with heart rate in 140's. This is very good news. Let us hope today continues with Good News. We can't thank you enough for all the prayers and good wishes from across the country. God Bless You.

Funny, not really funny. But I want to share this news with Ken the most. I'm going to miss him talking to me for the next few days. But I'm so thankful that he is resting and is healing.

Out of surgery

Ken is out of surgery. All went well. They were able to get two biopsies and sent them off. Now we wait for the results. He has a chest tube in just like in April. He is still sedated and will be for a few days. The waiting will be the hardest.
Wish I knew more.

Surgery this afternoon

The docs put Ken's respirator in and called in the cardiovascular surgical team. They decided not to do the broncial biopsy and take a tiny bit of his lungs. They are actually going to put him in surgery this afternoon and do an assisted biopsy where they will be able to get a larger section to see what is going on. When I know more, I will blog. Till then, I'm going to go rest with Ken. Bev

Please God, Please help Ken.

Please God, Please help Ken. Please help his doctors. Now I am really scared. We had a tough night. They just kicked me out of his room. They are inserting a catheter and a full respirator. They are going to put Ken asleep so they can have the machines breathe for him while they do another Broncial something. They are going into his lungs again for another biopsy. What they syspect is a rare side effect that can happen with one of his chemo drugs where it attacks the walls of his lungs. If they find this, they can treat it with steroids and they say it responds quickly. Usually in 24 hours. But it will take 24-48 hours of growing cultures to see if that is what it is. Am I to hope that is what they find? I just want them to find something besides a cold. Something else is causing this. So he will be kept under for sometime, 2 hours, 2 days. We are moving forward a little at a time. I wish I knew more so I could tell you. Ken was really scared when I told him goodbye. I am too. This can't be happening. His lungs are more full of fluid today. And I feel like I am getting a cold. For the first time all year. I cannot get sick. I cannot get sick. They will not let me in to see him if I get sick. I cannot get sick. Please God, help us.

Small positive

It is 6:00 and Ken is holding his own. He still has the breathing tubes in, but his heart rate is down to 120s and he is eating and drinking. He finally was able to hock up a loogy this afternoon and they sent it off to the lab. It showed positive for rhino virus... or the common cold. Go figure. If that is all this turns out to be, I will be thrilled. At least they have a positive something. But they are continuing to run the rest of the tests to be sure. The oncology doc has been in to see him and he ordered another lung biopsy. The pulmonary doctors have been in twice today to see him and a bunch of nurses. Even the head of nutrition came in to see us and her assistant. It has been a busy place. I was able to get away for a few minutes to go back to our hotel. I talked to the manager and they lowered the rate on my room to be below our per Diem. That was nice. I was afraid they would make me move to a smaller room, but they didn't. So I was able to come back to the hospital right away to stay with Ken. I was even able to bring my laundry and am doing it in the hospital. They are quite accommodating in the oncology unit.
Hope tonight goes better for Ken. He is so tired and weak, but still making an occasional joke. Gotta love the man.

2 pm Monday

Ken is about the same. They took him off of the respirator, called a BiPap. But they have 2 oxygen lines on him. One in his nose and another mask over his nose and mouth. He is still running a fever and high, 150 heart rate. No news yet, but they are treating him with so many antibiotics hoping something works. Even gave him Tamiflu today. They are doing another lung biopsy procedure tomorrow.

Midnight & 4:30 am & 8:30 am

It is midnight. Ken has taken a turn for the worse. He hasn't been able to keep his breathing oxygen level up, so they put him on a breathing machine that is like a respirator, only without the tube down his throat. It gives him pressure with the oxygen that helps open and expand his lungs. He is sleeping again finally, but he keeps trying to pull it off his face. He looks pretty scary. Let's hope he can stand to keep it on most of the night and he can get the relief he needs to calm his heart rate down. He has sure changed in the last 12 hours. Scary. Hope they figure this out soon....

It is 4:30. Ken is the same. He has been able to get some sleep with the respirator, thank goodness. Me too. I have a cot beside his bed, so we both slept a little. His blood pressure is good and his oxygen. His heart rate is still in the 140's and goes to 150's when he moves around. Still has a fever of 100.3 - 101.6. His oxygen drops to low 180's without the respirator, so guess it is helping. They just gave him more Tylenol. Hope it brings his fever down this time....

It is 8:30 am. Ken is still sleeping. I even slept till almost 8. Yeah. He is still on the machine, but heart rate is down to 121. I even saw a 117 when I got up. Hopefully when he wakes, it will stay down. They are going to take him off the machine when he wakes and put him back on the regular mask for a bit to see how he does. I'll keep posting. I think his fever is down too....

Ken is in ICU.

Forgive me. I am typing this with gloves on. Will probably take me forever. Ken has been moved to the Bone Marrow Transplant (BMT)ICU. They are monitoring his vital signs. He is not doing very well today. They say he probably has a sepsis infection which is being caused by an infection in one of his organs. However, they do not know yet which one. They first thought it was his lungs, but all those tests have come back negative. So today they moved him to ICU so they can run more tests and keep a better eye on him. They need to find the infection so they can treat it. Ken's temperature keeps going up and then his blood pressure drops and his heart rate goes way up. So they are trying to keep his temp under control and the rest of his stats. Right now, he is finally sleeping. His blood pressure looks good, his temp is ok but his heart rate is still fluctuating at 127-147. The alarm on his machines go off about every 2 minutes when the heart rate is over 130, so I am just constantly hitting the silence button so Ken can sleep. The nurses can see the alarms in their nurses station, so it is ok that I silence them. Just a pain for me. Could be fun to try to sleep in here tonight. He already asked me to stay with him tonight. At least the new room is bigger and they might be able to fit a cot in here. The recliner I slept in last night wasn't very comfortable but at least they let me stay with him.

I wish I had stock in these little paper gowns they make us wear. Every time we come into the room, I have to put on a new gown, a mask and gloves. Then I have to take them off before I leave the room. They are to stay in the room so we don't carry any germs out of the room. So every time I need to leave to use the bathroom, go to the cafeteria, or just go get Ken some water or ice cream, I have to put on a new gown. I'm on about the 15th already today. The poor nurses have to do it in each room also. Must be a pain for them.

I don't mean to be complaining. They are sure supportive here. They seem to know what they are doing. I have faith in them. And Ken is strong. He has come thru so much already, we just have to know he will come thru this too. They just have to find where the infection is so we can know what we are fighting. The doc said that 10 years ago, about 50% of people that got this infection died from it. But now, only 20% do. He said this hospital had a 13% fatality rate last year. I know that means I am happy that he is here since the odds are better, but I'm still scared.

On a good note, his bone marrow transplant seems to be doing great. His counts are way up so his white blood cells are starting to engraft. So if he can fight this, we will be clear sailing. Pray for the doctors to find this. Pray like you have never prayed before. (Though I know you are all praying already). I'll let you know thru the blog as soon as we know anything. We may have preliminary result as early as tomorrow afternoon. Let's hope so, because that will mean they found something. Otherwise, we will wait up to 72 hours for the cultures to grow.

Hope you all had a good weekend. Thanks to Linda and Ed for stopping by and lifting our spirits last night. Stay safe and warm in the snow. Bev

Day +12 and +13, the weekend

Ken is having a tough weekend. He didn't sleep at all on Friday night. His counts are up, but so is his fever. His fever spiked Friday night, his blood pressure went way down and his heart rate went way up, to 156. All day Sat, he tried to sleep, but only took 10 minute cat naps. He was having crazy dreams and talking in his sleep. He slept a little better Sat night, but still had a flucuating fever. They have him on tylenol and a ton of other stuff. There are 7 bags of meds hanging on his pole at the moment. I think only a few of them are dripping at the moment, but that's a bunch of stuff. His mouth is way better, so I think they are going to slow down the pain meds today. Maybe that will help with the dreams and the talking crazy. He is scaring me. They are talking about maybe putting him in ICU today. We are waiting to see the doctors to see what they say. Ken is a little to healthy to be in ICU, but he is a little to sick to stay here. They don't have equipment to monitor him from the nurses station over here. They have to come into the room to check his vitals. I asked if they could teach me how to check them and I would do it every 15 minutes, but they didn't like that idea. So we are waiting to see what will happen. Guess we can rule out going back to the apartment any time soon. As far as the transplant goes, Ken seems to be responding beautifully. His counts are way up and we would be excited if his lungs would just cooperate. They can't seem to find any reasons for the infection that are causing the pnemonia and the fever. They have run a bunch of tests, and they are supposedly treating him for 99% of the things that could be causing it, but he isn't getting better, at least not in his lungs. I'm asking them to take another x ray today or maybe another cat scan. I'd like to know if the pnemonia is better or worse. Thanks for your prayers. Bev

Day +11 Great bosses

I have been lucky enough in life to have some good bosses. Some good, a few great sprinkled in among those that are just mediocre. One of the the sayings that my dad used to down was "if you take care of your boss they they will take care of you". I haven't necessarily believed that through life, except it is true of the great ones. The one thing I do believe is that your boss is the only one who knows the true answer to any questions or problems you might be having. These past three weeks I have had new bosses, the group of doctors led by Dr. Jeff Matous of the RMCC. They aren't quite as funny or as easy to get along with as Robert, but they have been nice and can answer my questions. I have been told by several different people and nurses that I might be going home soon. Bev and I are now running into a insurance dilemma because once I was checked in I became an inpatient,virtually cutting or daily reimbursement in half. Problems of will we have to move rooms, worse move hotel are starting to concern me heavily.

So 15 minutes ago I saw my docs. They said my WBC have gone up dramatically and that will help to fight any infection I may have. They said my throat is looking better which is great news for me. I talked to them about my insurance problem so they will send in a social service worker to help me work that out. They were able to answer my ultimate question, when would I get to leave. Not until Monday at the earliest. They want to have all the facts of what is going on before they release me. That's really what it is all about, the reason why I got put in here in the first place. So we will wait for more results and look forward to Monday.

I wish you all the best of all weekends! God bless you!

Day +10 at night...

Ken came thru his procedure just fine today. They said there was definitely some kind of infection in his lungs and they got a good sample, but now we have to wait for the results to see what it is and how they will treat it. In the meantime, they are giving him a barrage of drugs to fight the main things it could be, so that should help Ken. He was anxious to eat this afternoon and was able to get down some soup, a milkshake and pudding. Gotta love those soft comfort foods. He is having applesauce and a chocolate Odwalla protein drink tonight, along with his sweet tea of course. At least he can swallow. He lived on the Odwalla protein drinks when he was leaking protein into his lungs back in March. That seems like such a long time ago. The doc that did his procedure also checked out Ken's vocal cords for us. He said that the right one was still a little sluggish compared to the left one, but they are meeting kind of in the middle. It is nice to have that peak so we know what is going on with his voice. I'm so glad that didn't turn into anything permanent. Thanks for reading this and keeping us in your prayers.

Calendar update:
Nov. 30th, 25 days till I see my Grandpa, Norah's 1st Birthday. Picture is of Norah in her 1st Halloween costume. She is Tinkerbell, sitting on the floor with a really happy smile. The lamp behind her is on and looks almost like a halo on our little angel's head. The quote is "The longer I live, the more beautiful life becomes." Frank Lloyd Wright.
Dec. 1st, 24 days till I see my Grandpa. Norah in the bathtub with just a washcloth on. They are pouring water on her belly and she has a very surprised look. "Courage is being afraid and going on anyhow." Dan Rather
Dec. 2nd, 23 days till I see my Grandpa. Closeup of Norah looking right into the camera with very big eyes. Her mom is kissing her cheek. Great mother/daughter shot. It says "Don't be shocked at how many people love and support you!" How true is that quote.
Dec. 3rd, 22 days till I see my Grandpa. Norah is in her pink sweater, looking right into the camera. She is so cute. "When you come to the end of your rope, tie a knot and hang on." Franklin D. Roosevelt Appropriate for today. Ken is hanging on and in good spirits. He is talking more tonight, so I hope that is a sign of good things.
Tempted, but not looking at Dec 4th till tomorrow. Have a great night. Bev and Ken.

Day +10

Day +10 starts off early. Around 2 a.m. my nurse informed me that I will be getting both platelets and blood transfusions today. I asked why more platelets since I just got them yesterday. She informed me that my platelet count went down due to the fever I had last night. I spiked at 100.9. At 3 a.m. they prepped me then at 4 I started with the platelets then moved into the blood. I have two bags of blood to go at about 1.75 hours each. I should be done by then. My bronchoscopy is scheduled for 11. I'm told it's basically a lung wash. They will take samples of fluid and possibly a biopsy of the lungs. Infection has set in. Not what we were hoping for. But we move on from here.

Day +7 to +9

Day +7 - Great
Day +8 - Great
Day +9 - Not so Great

Day +7 started out in the cancer center as usual, then we were sent to the infusion center in the hospital for a blood transfusion. Normal, this is expected as Ken's counts stay low. If the red blood cells get to low, he gets blood. If the platelets get to low, he gets platelets. The platelets go in fast, but the blood transfusion takes forever. We didn't get out of the hospital till 5:30 PM. Long day.
However, side note. This day +7 was Norah's first birthday and she woke up to a surprise. She got her first tooth on her birthday. Was poking thru when she got up in the morning. Funny birthday present.

Day +8 started again in the cancer center, checking levels and giving fluids. They said Ken's platelets were getting low again, so he would need platelets the next day. They were concerned about his fast heart rate, but they did an EKG and it all looked fine, so they sent us home, late morning. Ken slept in the afternoon and pointed out to me that he could hear funny noises coming from his throat. We thought it was probably from his mouth sores. Sounded funny, like a percolator in his throat, or fast bubbles popping. I could hear it in the night between his snores too.

Day +9 started again in the cancer center like the day before. They said we would for sure be getting platelets. They asked to get a chest X-Ray also since Ken's heart rate was still high and in light of the noises we were hearing. So we came to the infusion center in the hospital where they hooked up the platelets and ordered the X-ray. But before they could do the X-ray, Ken's oxygen levels were low, in the 80s. So they ordered a cat scan also and admitted him to the hospital. Turns out he has pnemonia again. They are running a battery of tests, starting with the flu test to see if they can find a reason for the pnemonia. They have upped his anti-biotics and scheduled him tomorrow for a scope to look in his lungs. This kind of shocked me. I think Ken expected it, but he has been doing so well, it took me by surprise. Ken said he wondered because of the noises. I didn't expect it since he has been filling so great.
So here we are. Tiny room, crappy view, no bed for me, just a recliner. No second chair if Ken wants to sit in the recliner. I miss University of Colorado Hospital. But I shouldn't complain. At least they are doing what they need to fix him up. Let's hope they caught it quick enough. The pnemonia showed up on the cat scan and the X-ray. Hopefully, by tomorrow we will know more of what we are dealing with. I asked if he would be moved to ICU and they said no. This is cureable and Ken seems strong. They are concerned that his counts are still to low and he won't have much luck fighting this. So they have started daily neutrapen shots to boost his white blood cells. Hope that helps. Toughest day so far. Day +9.