ICU Update

Yesterday Rudy's blood sugar dropped very low.  It was around 43.   The nurses jumped on that with special fluids and got it up.  The doctor really wants to get Rudy eating again.  He said if Rudy didn't take in some nourishment pronto, they would need to insert a nasal feeding tube.  Rudy had a chocolate protein shake for dinner.  Linda said he seemed to enjoy it.

He has a new oxygen system.  The tubes are larger.  They had wanted to use a mask system, but he wasn't having any of that.

He hated his breakthrough pain meds, so they ever so slightly increased his main med.  It is controlling the pain, but he's a little more loopy.  During the night, he yelled for me.  He had one leg off the bed, had pulled off his oxygen tube and said he'd been told he could go home.   The nurse checked his blood sugar and it had dropped again.  That may explain why he was acting goofy.

Other than the going home incident, tonight has been much calmer than the night before.  He was very restless and needed me over and over all through the night.  It's easy to lose a sense of night and day in a hospital, especially when pain meds are involved.  He knew I was there to help, so he called on me often.  He didn't understand that I might have been "hoping" to sleep.  I was up and down all night long.  The crazy thing - the next day he told me I was going to have to do better about helping him.  He said I was sleeping and he couldn't wake me up.   Seriously???   Later it occurred to me that Linda and I had recently stepped out of the room to talk without disturbing him.  He must have seen my thick blanket (from home) piled up on the sofa.  He can't see it real well from his bed.  He probably thought I was under it sleeping away.

By the way, the blanket is one our niece, Denise, had given us a few months ago.  It's super thick and warm and is really great.  Rudy's ICU room stays pretty cold.  It's perfect for Rudy.  The antibiotics are keeping him warmer than usual. Linda and I are having to dress warmly.  I stay under the blanket whenever possible.

Linda stayed with Rudy for a good part of yesterday.  I was too tired to function.  I went home and took a really hard nap.  Nancy came over and I showed her our crazy system of feeding and taking care of 6 dogs and three cats.  It's not a straightforward system.  We have a dog with allergies who has to eat special foods.  One of our cats is blind.  

I'm not sure what the next few days will bring.  At some point he'll probably be moved to a regular room.  Being with Rudy around the clock is hard.  It's only because of that night shift. I don't mind at all being with him if I've had a decent nights sleep.  I'm not sure what we're going to do but something has to change about the night detail.  I had thought about leaving him to the ICU staff overnight, but tonight's episode has made me rethink that. (He just tried to get out of bed again. )  If I hadn't been right there in the room, he might have tried to walk on out and go home.  He's too weak to walk so getting out of bed would likely result in a fall.  I wouldn't want to strap him in or anything like that.  I also don't want to put any of our friends or family on a night shift.  We have lots of offers for help, but losing sleep is rough.  I'm wondering if I should hire overnight help for a few nights.  I wonder what that would cost.  It doesn't have to be someone in the medical field.  The person would mostly hand him water, adjust his pillow, and keep him from trying to get out of bed when he's feeling loopy.  Does anyone know someone who might like night work?  Or, if anyone has other ideas, please let me know!

I miss Rudy.  He's right in front of me, but it's been a long time since we've had a normal conversation.  Between pain meds, hacking, nausea, and breathing difficulties, he's just not able to talk much.  Cancer is horrible.

That's all for now.  It's 3:07am.  

ICU - No Visitors Please

Rudy will be in ICU for a few days, give or take.  He's fighting several things right now.

He has pneumonia.  It was a pretty good case of it, but he seems to be responding to the antibiotics.  His breathing is better.  The most polite way I can describe his coughing is to say that it's quite productive and colorful.  His temp is staying closer to normal.

Rudy doesn't like to be boring, so a new trouble has popped up.  His liver is inflamed thanks to the lovely Hepatitis bug.  It's really painful.  It went from not there to awful in a matter of a day or two.  He has two pain meds now and the dosage has been upped and upped so that his pain is tolerable unless he coughs or tries to sit up.  He's a bit loopy and that's probably a good thing right now.  The hepatitis just has to run it's course.  There's still a chance we'll be seeing a hepatologist soon to see if there's anything else to be done.

Rudy was sound asleep when I took this picture, so I didn't include his face.  I'd much rather get him when he's smiling and alert.  There's a sliding glass door behind that curtain to keep the sound down and the nurses station is just beyond.

If Rudy talks, it brings on coughing.  Coughing brings on really bad pain.  He doesn't need visitors.  I've received many messages and emails from people wanting to come see us.  Even those who know Rudy doesn't need visitors want to come and offer support to me.  I truly appreciate it, but actually it wouldn't be helpful right now.  I'd need to step way down the hall out of ICU to see a visitor.  If a doctor came by while I was there, I'd miss it.  When Rudy coughs, he needs help to sit forward without it hurting so bad.  I only leave the room right after a major doctor visit and only after room is sleeping soundly.  There's no way to set a time on either of those factors so I don't even want to plan to meet someone for lunch.

Today, I grabbed a quick lunch and ate it outside at the swan pond.  A lovely lady and her daughter happened by.  She quickly told me her story, which included that she has stopped treatment to have her daughter.  She knew the treatment would cause infertility so it was her only chance.  It was an absolute treasure to watch her telling her daughter all about swans.

I know people are worried about me, but there's no need.  I'm doing fine.  I feel more relaxed sitting in that room with Rudy than anywhere.  It makes a huge difference knowing that there are a zillion experts watching him constantly and jumping through all sorts of hoops to help him through this.  I can be with him without the pressure of not knowing what to do to help him.

His room is right in front of the nurses station.  Other people are in charge of helping him and they are very good at it.  The room is large.  I have my choice of a recliner or sofa.  I have pillows and blankets and it's actually not a bad place to sleep. There's a private bathroom.  There's a TV, which so far has only been turned on to see if the Braves were on.    Best of all, I have his sister, Linda, staying with Rudy whenever I need to leave.  She would do anything at all for her baby brother.

I'm rereading the Mitford Series books
which are very upbeat and heartwarming.

His other sister, Nancy would be helping, too, but unfortunately, she has a respiratory infection or something.  She went to the doctor, but I haven't heard the details.  We feel sure she shouldn't be anywhere near Rudy.

My sister and parents would love to help as well.  They've offered to do anything they can.  So have our many close friends and large extended family.  There's just not much anyone can do right now.   But, let me make this point - all the offers mean more to me than you'll ever know.  Just knowing how much we are loved and that help is just a phone call away is very comforting.  

Just Breathe

The last 24 hours have been rough.  We've had one crisis after another and one solution after another.  Rudy and I have been surrounded by earth angels - Nancy, Linda, Lorraine, and my parents.

Friday morning Rudy said he thought he might be needing to get on oxygen.  His breathing rate had increased and he felt like he couldn't get a good breath.  He had woken up a couple of times the previous night because of breathing challenges.  He said one of the times was particularly scary.

I called CTCA and an appointment was scheduled in with his other Monday appointments to get that going.  We didn't think there was a rush.  A Monday  appointment would be fine.   NOT.

A random stop at Rockin' B to pick up an office chair turned out to be divine intervention.  Lorraine was there and asked about Rudy.  When I told her what was going on, she just happened to have a really nice oxygen concentrator - a portable unit that makes oxygen without the tanks.  Did I want to borrow it?  SURE!  She even had lots of spare tubes for it.

I went back to Rockin' B yesterday afternoon, picked up the tank, and headed back home.  I wasn't gone long.  When I returned, Rudy was on the floor.  He had passed out and woke up on the floor.  He stayed there til I got home. His elbow was bleeding.  He was frantic for me to set up the oxygen tank.

OMG.  Lorraine had given me a quick lesson, but doing something for the first time in frantic mode is not the best way to get started.  I had some trouble and it took everything I had to keep from flipping right out with fear.  Once it was set up, he had instant relief.

Once he had instant relief, I starting getting sick.  I have stomach issues - IBS or something.  I can almost always control it by eating right.  At first I thought I must have eaten something wrong, but apparently, this episode was stress induced.  I could feel the pain and nausea increasing and knew that with Rudy needing close monitoring, we had to call in the reinforcements.

I called Nancy and she dashed over.  Just her very presence was a huge relief.  I gave her a super fast briefing, then went to my chair upstairs to sit very still and wait for the worst to pass.

At one point in the evening, Rudy took off the oxygen to go to the bathroom.  He came back super fast frantic to get it back on.  The system has two backup batteries, but since Rudy started using it immediately, there was never a chance to charge them.  And now, Rudy feels he just can't go without the oxygen.

Everything went smoothly the rest of the night, thank God.  Nancy insisted on staying the night and I didn't argue much against it. Thanks to her,  I was able to actually sleep.  If she hadn't stayed, I probably would have slept with one eye open and jumped at every sound.

The night passed without incident.  The oxygen system worked with no issues. Rudy slept in a recliner in his office and that turned out to be great.  Apparently sleeping more upright is helpful.  Between the upright sleeping position and the oxygen, he had less issues with hack attacks through the night.

This morning, things seemed OK.  By OK, I certainly don't mean they are going well.  Things are not going well.  Rudy is in bad shape.  He's weak and fatigued.  He's not eating.  He is drinking, but food (even the food he asks for) just sits untouched.  His quality of life is just awful.

Nancy went home to get some quality sleep.  She had slept in a living room recliner.  I have been meaning to get a guest bed, but hadn't.  I decided that couldn't wait any longer.  It's likely we're going to need to have some overnight guests and they need a decent place to sleep.

Linda came to stay with Rudy this afternoon.  I'm definitely not leaving him by himself anymore.  I set left to get a mattress, sheets and pillow as fast as possible.  I was halfway thru my mission when Linda called.  The oxygen contractor alarm had gone off.  The alarm code sounded ominous and the manual recommended we get a backup system.

After MANY panicked phone calls all over, Lorraine quickly followed me to my house and made a few changes.  Lorraine saw that I had hooked up the system with a really long cord.  She bypassed the long cord and attached the nose cord straight to the machine.  She could then turn down the setting and Rudy still gets plenty of oxygen.  We were hoping that on the lower setting, the batteries might be able to charge, but that's not happening.  The batteries are old and may need replacing.

Linda, Nancy and I all agree that Rudy should have gone over to CTCA yesterday.  He didn't want to go.  He was adamant.  He feels just as strongly about it today.  He doesn't want to go til his appointment on Monday.

So now, we are in between a rock and a hard place.  I could force Rudy to go to CTCA.  That would stress him to no end.  Or I can pray like all getout that Lorraine's life-saving oxygen concentrator continues to keep pumping til we can get him over to CTCA on Monday.  (The alarm has sounded two more times since everyone left.)

If anyone has a spare oxygen system lying around, please let me know!

Tonight, Rudy and I are on our own.  My parents live right next door and they have helped with everything they possibly could.  They would do more if I would let them.  I know if I called them tonight, they'd be over in no time at all.  In fact I have any number of people who have offered to help with anything at all.

Am I OK?  Truthfully, no.
But, for now, it's very important
for me to keep going along as if I am.

I feel almost as if I am watching everything from afar.  Is this normal or have I just turned to stone?  Only part of my brain is working correctly - the part that is logical and looking to what needs to be done.  The emotional side has shut down almost completely.  My emotions have been on a pretty tight leash these last six months.  I've pasted a smile on my face and kept my butt in gear to put it crudely. I definitely can't open that emotional Pandora's Box right now.  If I did, I feel sure I'd completely dissolve and wouldn't be able to help Rudy when he needs me most.

Please pray for us.