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.