Saturday, February 26, 2011

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. .


Rudee said...

" I just don't see a way around him not becoming agitated with becoming conscious to his condition."

He may need antipsychotics. Get that palliative care consult and add a differently thinking brain to the mix. Also, he may need real sleep. It's hard to sleep when you're so connected, so to speak.

I'm continuing to wish you well.

Julie said...

Good news to read there is more slight improvement.

thoughts and prayers are still heading your way

take care xx

Dina said...


by Teresa said...

Dear dear Denise. Goodness.. what a trial you are both going through. Is there anything I can do for you long distance? But if anyone can get through this, your strength will do it for you both.

Hugs, Teresa