I Had A Bad Day

We had a few bumps in the road last night and today.  I almost punched a Dr.  That song was playing on the radio by his bed as I left tonight, it was fitting.

It's what the nurse (me) ordered.  My coffee, cherry brandy, knitting and the dvd remote.

Last night just as I was falling asleep I had a major panic attack wake me up.  My head was telling me something is wrong, danger.  Then the dr. saying, hopefully he doesn't throw a clot, came to mind.  I had just hung up with his nurse 30 minutes earlier.  So I told, my brain to shut up and went to my happy place, an English countryside, noted the time and finally fell back to sleep.   Sometimes, I have those attacks and something really is happening (which is scary) then other times, nothing that I know of had gone wrong.

This morning when I called up to the ICU, as I always do at 8am, after I know they finished shift change.  The day nurse told me they had a blip with his heart, like that Saturday night, only they were able to get him back into normal sinus rhythm with just medication and didn't have to shock him.  Then they had to turn his O2 back up to 100% because he was acidic.  I asked her what time that had all occurred.  Same time I had the panic attack.  My mother said, it's because we are that close.

When I came in, the renal team had a hard time with his femoral line. It's not working right.  His blood pressure went low and they were only able to take less than a liter of fluid off.  They were hoping for three liters like on Saturday. Right after they left, his blood pressure went right back up.  Tomorrow, they will put in a new renal line in a better spot.  One of the ones they put in for people on long term dialysis.  Not that they think it will be long term, it will just be more comfortable for him in the recovery process.

Tired doesn't begin to explain how I feel.  I'm getting pretty punchy now.  There's no getting on my last nerve, because I don't have any left.  Just some frayed wires hanging every which way.  I had mentioned that I requested a palliative consult to get a new perspective on managing his pain and anxiety.  Well, it's a new group, just a couple weeks old.  They are only handling hospice patients.  How was I to flipping know that? (My temper is coming back up at the re-telling.)

So this new Dr. was in on today.  I found out he is one of the Fellows.  I guess the chain of command is Attending, then a few Fellows, then residents, on down the line.  Well, he came up to me this afternoon and started telling me that palliative care was only for hospice, end life care.  He wasn't shouting, but talking really loud, very over bearing, wouldn't let me explain myself, kept talking over me,  every time I stepped backward, he stepped forward.  Just on and on and on.  Insinuating it seemed like I was requesting end of life care.  We will manage his medications, he said.  That fight or flight response really kicked in and I knew I was about to hit him.  So I put my hands up, in a back off stance and turned away from him.  I was so upset I was shaking, which is never a good sign.

My children will tell you, if Mom is shaking with tears in her eyes, it's because she's trying to control the urge to do some serious physical harm.  Lucky for him, he walked away and I went downstairs and smoked a whole cigarette.  (Yeah, quitting went out the window with this mess.  I'll try again later.)  I came back up and calmly told the day nurse who witnessed the scene that I don't ever want to be addressed by that Dr. again.  It will all end in tears if he speaks to me, mine and his.  She calmed me down and gave me a hug.  The dialysis nurse had witnessed it to and wasn't real happy with the way he spoke to me.

Later, they made sure I got to speak with the attending.  Apparently he realized he really messed up, because she said he told her he thinks it would be a good idea to stay out of my radar for awhile.  Yeah, that would probably be the best idea he had all day.  The attending said, he gets too excited and can be overbearing when trying to communicate and apparently this has happened once before.  Then she said, however, I'm still pissed.  It's a good thing he realized his mistake.  Otherwise, I would have to hope that one of you notices I've come up missing for a couple days,calls the Pima County Jail and posts my bail.

She (the attending) told me, she hates this because it's so traumatic on the patients and their families, tomorrow is her last day and she's going off service.  The next Dr. doctor she said is very nice and really likes him, so try not to be scared.  She really wished they could follow their patients through to the end.  I said, I realize they need some time off, like everyone does, but this is really crap.  I just got to know and trust this Dr. and she's going away. *cry, tears*

On a lighter note.  There is this funny thing playing out up there.  To get on the unit, you have to push a button which rings a bell, then the receptionist pushes another button which makes the door open.  There is a window beside the door.  A short hallway of about 20 feet on the other side then the big main desk.  The day receptionist is a greying redhead, like me, maybe ten years older.  Every time, just as I get about 3 feet to the desk before I turn to go down the other hall, I always look at whoever is sitting there, and say thank you.  She's getting a kick out of it, and always says your welcome.  So, she started the other day, when she notices I'm getting close to the door to leave the unit, she pushes the button and the door comes open.  The first time, it surprised me, when door opened by itself.  I turned around and looked, then shouted (not really loud) thank you,  she shouted, your welcome.  Now, we have a game going.  After two weeks, I'm starting feel like the unit's mascot.

This is a picture of me, looking at a picture of my oldest son's new lip piercings on FB tonight.   He likes my reaction.

I'm going to finish my coffee and brandy.  Do some knitting and put Led Zeppelin dvd in for Dammit.  Then I will head to bed.  Bootise is being bad.  She took all the junk flyers and scattered them around the living room, mainly under the bird cages.  She pounces them and the noise sends the birds into a frenzy.  

Thanks for reading and commenting.  Things have to calm down soon, at some point, right?

Waiting To Exhale

Picture that mountain half covered with snow.  I wish I had my camera with me this morning, it was mostly melted by afternoon.  High of 45F today and it felt pretty cold to me.  Don't laugh all of you up north, it's what I'm accustomed to.

D stop rolling your eyes at my title.

I don't know if it was the day that was tiring or the cold that made feel so tired today.  Just tired, not the overwhelming fatigue I felt on Friday.  I came home at three and just crashed for a couple hours.

It's been an emotional roller coaster.  This morning he became a little acidotic when they turned his sedation down, so they turned that and his vent oxygen back up.  The dr.s did order some longer acting pain and anxiety meds to try to wean him off the drips with boluses as needed.  He's still becoming very agitating when they lower the sedation and I really can't blame him.

The night nurse is someone he had a few nights ago.  She's ok, but I do like the nurse he had the past couple nights better.  They do need time off and I can't have my favorites every day, every shift.  She asked me how I was doing, and I told her, I'm really tired.  Just waiting for him to come off the vent and be conscious so I can relax a bit.  It felt like I was waiting to exhale.

The attending was making rounds just before I was leaving.  So I went out to the hall to listen.  Some of the nurses don't like me to do that, but I tell them, "As long as they are talking about my person, I want to hear what they are saying and give my input on decisions.  Until one of dr.s tells me not to do that, that's what I'm going to do."  They mutter about HIPPA laws and I just restate the above. Some of them act a little shocked at my audacity, but I don't care. I'm not there to make friends.

The attending asked me how I was doing and I told her about feeling like this was marathon with no mile markers to tell me how long this race is or how far I have left to go.  She said that she loved my analogy and was going to remember to use it in the future.  Score one for me.  It's always good when you can impress an attending with intelligence.  So, she took a step back and really explained where we were at.

Normally, with this serious a case of ARDS, they take usually 4-6 weeks.  However, he's made such good slow progress he's ahead of the curve.  She's thinking a week more maybe less on the ventilator.  She took me over the machine and really explained the questions I've been asking and not getting the answers.  How frustrating it has been to ask a direct question and get an answer to a totally different question that I never asked.

She said, she won't necessarily put him on the CPAP vent the day nurse was mentioning.  That as long as he could tolerate 50% oxygen or less without becoming acidotic when the sedation was lowered she would be will to pull the tube and let him come to full conscious.  About a week she's figuring, maybe less.  That is if all goes well and he doesn't have any ICU complications like new infections or throws a clot. (Crossing fingers, toes, wings, paws.  Knocking on all the wood including the plastic wood.  Salt over my left shoulder or is it the right. Hell both shoulders just to be safe.)  She said this is a 26 mile marathon and we're at mile 20 mark.  Coming into the home stretch, I hope.

She's going to put in for a palliative care dr. consult first thing in the morning.  To get another perspective on how to manage his pain and anxiety.

I was sitting and thinking today, now that I'm far enough away from it, just how sick he was.  That was the worst I have ever saw.  That first Friday, I thought it's just a really bad case of double pneumonia, they'll put him on the vent for a few days until the antibiotics kick in.  Then Saturday really hit me from out of no where.  The damage the virus did, I think I can only compare to getting hit with a truck.  Then I'm not sure if that even describes it.

It's times like this when blogging should be great.  You know, if my family came and read the posts, like I tell them to.  I haven't called my mother since Thursday, she'll be ok with it.  She'll know I'm just really busy and as long as there isn't any tearful, panicked shrieks on her answering machine things must be going in the right direction.  My daughter pm'd me on FB for the second time wanting me to call her as she feels left in the dark.  I pm'd her back that I'm just really busy right now.  There is no reason to feel in the dark when she can go on my profile, click on the links, read the updates and any further questions pm me and I'll respond when I can.  It's 1am where she is, I'm tempted to call and say I finally have a minute to chat.  Yes, I can be evil. *grin*

My neighbor is reading after I told her to and then scratch on my window with any further questions.  It's just if I spend a half an hour with everyone who would like a verbal update, then that's 2 -3 hrs that I just don't have.  I just don't have it, not with being up there for 12 hrs, taking care of pets, myself and sleep in there when I can.  It's just so much easier to type it up here, everyone can come and read when they are able to.  I noticed some people from my hometown are reading through FB links, but I don't know who they are as they aren't saying anything.

Phew, end of rant.

Today, I brought Fried Green Tomatoes at the Whistle Stop Cafe to read to him.  Reading aloud for so many hours a day is really tiring, especially when you have no interest in what you are reading.  I needed to give myself a break and read something I liked.  Besides, I think it might be just the sound of my voice more than anything that is comforting.  That's what the nurse tells me.  If he wants me to stop, he'll just have to get well and tell me to stop.

If nothing else, maybe these posts will be helpful to someone at some point.  I noticed someone came to my blog searching the flu.  Someone might have a loved one with Hantavirus and be scared out of their wits and come across my story.  Who knows what we say or do will have an effect on someone else.

So that was today's saga.

Thank you for reading, caring and commenting.  Once he is conscious and off the vent, I might be able to bring my laptop to the hospital with me and spend sometime online catching up with the rest of you.  I hope you all are ok, out there.

Keep On Keeping On

It's getting harder to think up titles.  His nurse said we made great progress today, but I think that was because the nurse had to work extra hard.  Luckily, he's had a male nurse the past couple days, the added physical workout.  They moved him onto a regular bed with an air pressure mattress to prevent pressure sores.  They are all well aware of the fact they are dealing with old-time long term and rehab care nurse, me.  I'll admit I can be kind of a witch with b.

 It's just that I've seen some pretty nasty stuff come out long term ICU stays, that were preventable.  I was told they were focusing on just keeping the patient alive and didn't have the extra time.  I wasn't working on those ICU units at that time so I can't make judgement.  However, his nurses just have him for a patient with me there 12 hours a day.  I might not be able to help lift him with my back, but there is other stuff I can do other than sit and read.  I do make sure to exercise his hands and fingers every couple hours while I'm there, so they don't stiffen up on him.

If you have ever been in bed for awhile with the flu, and you know how stiff and weak you feel when you try to get up and move around.  Imagine what it must be like to be sedated for now eleven days with a virus so bad it caused multi-organ failure. When he did become somewhat conscious there was no chance of him reaching up to pull tubes because he's just too weak to lift his hand off the pillow more than inch.

He was more wakeful over night and most of the day.  Which caused his blood pressure and heart rate to really soar.  It's the anxiety of coming semi-conscious to all those tubes, machines and alarms.  The blood pressure medicine wasn't really bringing it down, so the nurse got an order for a different shorter acting sedative and increased his pain medicine.  When I left he was pretty well sedated not opening his eyes.  He had became alert enough that he was opening his eyes to voice and touch.  Not focusing to try to see anything, just half opening his eyelids.  His fingers did start to curl around my hand when I was holding it today.  That really made my day. It's been like holding a limp fish until this point.

I'm a bit frustrated at this point.  The nurses want to keep him really sedated it seems.  They said, he needs to stop getting agitated when they turn down the sedation, then they can really start weening him off the ventilator.  I just don't see a way around him not becoming agitated with becoming conscious to his condition. I think the more conscious  he is, the more he's going to work his lungs to come off the machine.  But what do I know.   I'm just taking every day as it comes, it's all I can do.  So, no progress was made with turning down the vent, today.

He came off the continuous dialysis and is now on hemodialysis for a few hours daily.  The renal team was telling me, we don't know if he'll regain kidney function.  I'm saying, look you can't tell me for sure he'll regain function, let's not drift off to the negative just yet.

It's just one day at a time, slow and steady.  I'm remembering eight years ago this past week.  My 20 year old daughter and I drove from Rochester, Ny to Tucson to bring him up to NY.  She came along to help drive, but I ended up doing most of it.  We went through a terrible ice storm in Ohio, that I slid off the road twice, figured out how to get myself back on with old newspapers I had in the back.  Then in Indiana, I drove through a snow storm that came after the ice storm that had already went through.  Clear in Illinois and the northern half of Missouri.  Just as we were headed for flat lands and I thought I could let my daughter take over for a bit, we hit a huge blizzard in Springfield to Tulsa.  I just kept on driving through all of it, slow and steady, letting cars pass me and seeing them crashed on the side of the road as I went by.  Slow and steady, with complete stubbornness, I made it.  It took me from 3:30 pm on Saturday to 2:30am Tuesday, but I did it, 2750 miles.  Yes, solid driving, I only pulled over to rest a few times.

I do half to admit, there's this little part of me that wants him to prove that nurse wrong when she comes back on Wednesday.  Hey, I'm not perfect.   Except, he wasn't aware of what she was saying and he doesn't quite have my rebellious, oh yeah, well I'll show you, attitude.  That and I would really just like to see him get better and off those machines for his own comfort.

My friend was able to make it down from Phoenix for a few hours today.  She got to meet the crew and especially the infamous Dammit bunny. Everyone was quite excited to meet a new person.  Even Tennessee let herself to be petted, which is very rare.  I have to say, I think Dammit and Bootsie were especially excited about the attention.  I got Dammit to allow me to pick him up and hold him so she could pet him.  He became a little rambunctious as he prefers D to hold him. They're bonded buddies. Me, he sometimes tries to bite me on the shoulder when I hold him.  Hmmm, there seems to be a theme here with Dammit and Bootsie and their Pop bonding.

Butterscotch let himself be pet a little bit, but acted skiddish.  Which is rather strange for him.  I noticed when I came home he had a nice long scratch down his nose.  I think the girls cornered him and beat him up at some point while I was gone.  They like to do that because he's so docile and gentle.  I'll tell Dammit to do some cat bowling on the kitty pile when he gets the chance.  He likes to run into the bedroom and jump in the middle of the cat pile on the bed and send them scattering like furry bowling pins.  Dammit has more personality than ten rabbits have the right to have.

I was thinking when things settled down, it would be nice if she came down and I arrange the bunnies schedule so Dammit and Betty are out frolicking and playing tag.  But you know, they are so ornery, if we went to all that trouble, they would probably just sit under futon and play act like they are stupid.  Animals and small children never do what you want them to, when you want them to do it.

She brought me some alpaca fiber which she knew the alpaca's name from which it came from.  Plus some merino/silk which she said was too pretty to sit around and not be spun as she is currently wheelless.  I'm going to spin it and bring the finished yarn up to her to knit.  I'm running low on spinning fiber, but I have a ton of yarn and most of my knitting planned for the year.  I think the yarn will be too pretty to sit around waiting to be knit.  It's a lovely turquoise and brown.  I noticed we like the same colors. It's dark and I can't get a decent picture.  Will post when I have some decent daylight.

We have a big storm coming tomorrow, which will be today when you are reading this.  High of 45, ugh.  Will feel pretty cold to me, compared to what I have become accustomed to.  Possibility of snow.  Hurry up Wednesday, when it will get back up to 80, which is where I like it with the low 20% humidity. Everyone tells me to enjoy this cool weather while we have it. The 110+F temps will be here soon enough.  Amazingly there are days I enjoy those hot temps, when I'm all stiff and achey.  I go for a walk around the block and when I get back I feel like my joints got a nice hot oil treatment.  Weird, I used to hate hot weather when I was younger.

It was good to get away and be human for a few hours.  I came back to the hospital feeling more refreshed and able to take on whatever new challenges were headed my way.  The nurse I liked came on for the night shift and I left a little earlier than I normally would as he was well sedated at that point.

The past couple nights, I haven't need any Advil pm to get to sleep.  I'm out cold just as my head hits the pillow, I'm so tired.  I'm getting 7-8 hrs sleep a night.  Eating just a little more than normal, because of all the extra activity and drinking 3-4 of those big hospital styrofoam cups of water a day.  So, I am taking care of myself as well as I can.  It's just all the stress, I think it's the stress, that has me on these every other day fibro flares where I'm just so fatigued, achey and kind of foggy.

Again, I hope I haven't bored you to tears.  Thanks for sticking with me during this marathon run.  It is like running a very long marathon with no mile markers to show me how much is left to go of this race.  The last leg of this journey is going to be hardest, when he becomes conscious and starts to rehabilitate, that's when he'll need a lot of my support.

Teresa, I know you would come help me if you could. Oregon is one heck of drive to Tucson. .

Slow and Steady Progress

I believe that mountain is sitting on my head tonight, so I'm going to be pretty short. (That's right, I'm already pretty short.) I'll brief and to the point.

He's off all the blood pressure medicine, but now it's going in the other direction, too high.  They say it's because he's becoming more aware.  His oxygen levels are great today and they are now decreasing the pressure of the ventilator very slowly.   It took about 24 hrs from the time they stopped the sedation for him to start opening his eyes just a bit.  Just a bit.  Like a butterfly wing flutter.  When he got to the point that he fluttered his eyelids when I stroked his forehead and turned his head just a bit towards my voice, they turned the sedative back on very low.  At this point, they are just checking to make sure he can be aroused.  They do NOT want him fully conscious just yet.  Really, who would want to be made fully conscious with all those tubes and wires.  I know it would really freak me out.

The Hantavirus!  Grrrr, gah, blip, bleep.  (Many words that would make some of you blush to hear me utter.) How flipping, bleeping confusing this is getting.  So today, we have a new attending Dr.  They work on a one week rotations.  She seems good, a bit more hands off than the Dr. I liked, but I haven't really spoken much to her to make a clear judgement, just yet.  The residents all said that now it's not Hantavirus because the second test came back negative, so that makes the first test a false positive.  I asked the Dr. yesterday, three times, slowly and precisely, was there a chance of it being a false positive.  He said, no, they are very exact in their testing.  The residents, students, interns, who the hell knows who these laptop people are, and right now, I don't really give a damn. (can you tell how frustrated I am?) stood there and argued with me about the conversation I had with their attending Dr. the day before right in front of them.

The infectious control Dr. came and talked to me shortly after and said that yes, it is Hantavirus, the negative result was for the strain they most commonly see in US around these parts.  They are doing tests for other strains and will get back to me.  They keep asking me if he has traveled to Asia in the past couple weeks.  No, Doc, we lead boring lives, the farthest he's traveled is ten miles across town on the bus to work and back again.  It is not contagious person to person contact.  Puzzling to say the least.

There is no specific treatment for Hantavirus anyway.  With any virus the only treatment  is supportive care, which they have been doing and wait for the virus to leave the body and clean up the mess it leaves behind.  I just wish they would tell me stuff when their definite is actually definite.

What was it, Sunday, when I said my fibro and sciatica was staying at bay? It feels like a year ago.  I knocked on all the wood and  missed a piece somewhere.  Monday, I felt like crap, Tuesday a bit better, Wednesday I was trying to push a mountain, Thursday better.  Today that mountain turned around and sat right on my head and neck.  I've been up there from 9:30am to 7:30pm with pain and fatigue so bad I wishing they would sedate me and put me out of my misery.   I just really wanted to be there when he did start to come to the surface so it wouldn't be as stressful as only hearing a stranger's voice.

I read when I could and sat back in the chair with my eyes closed when I needed a rest.  Luckily, the nurse I really liked on Tuesday is with him tonight, and I feel more confident coming home and leaving him in her capable hands. I passed her coming in on my way to the bathroom, and I said, "Oh I hope you have him tonight."  She said, She would do best to fight to get him assigned to her.

So here I sit updating you all (and him when he's able to read this) having eaten a Marie Callender's Pot Pie. My headache is feeling a little bit better.  Then I'm going to take care of the menagerie I have here, call to check on him, and go to bed very early.  The neighbor's upstairs better not wake me up or I'm calling the manager and he's going to be shocked at the language that can come out of this tiny red head's mouth.  (Sorry, Susie, I really don't have time to cook from scratch, it's that prepared processed crap.  However, I'll have you know Marie Callender is the top of the line and actually tastes almost as good as homemade.  I do have a roast I'm going to put in the crockpot with some veg over the weekend.  Thanks for calling me Super Woman.  I think my cape has tear and I know I saw a run in my tights today.) (I'm being funny, if you can't hear the tone of my typing. *grin*)

In case you're wondering at the change in my writing voice, it might be because I've been reading Hunter S. Thompson for the past two days.  If you are unfamiliar with his work, I highly suggest you go to your local library and read a few pages of whatever novel they happen to have.  You'll understand after that.  He's a pretty wild ride.

Hopefully, I haven't bored you to tears.  Thank you for reading and commenting.  It really helps to get through the day.  Hopefully, you never do, but if you ever need me to return the favor, my bedraggled self will be there if only in spirit helping you to fight through whatever.

Oh by the way, Dammit and Betty were very odd today.  This morning while I sitting here thinking about how little energy I had to chase them back to their cage, Dammit lead Betty out from under futon, into the bedroom and right into the cage. No chasing what so ever.  It was so odd behavior for them,  that after I shut the door, I stuck my hand in the top door to let Dammit pounce me a few times, so I knew I hadn't dreamed it.  I think I should give him an hour of Zeppelin while I get ready for bed as a reward.