Sunday, February 27, 2011

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.


CraftyCripple said...

It seems like you had a really informative day. I think you are very sensible telling people to read your posts for updates. You don't need to tell all this over and over again. I'm glad that you have started to get some answers at last.

melbatoast68 said...

I'm so glad thatbyounare finally getting answers. Just take care of yourself and D and the rest will take care of itself.

Julie said...

Great idea to write it all here and folks can come and read, you need the quiet time to be able to re-assess what you need to get done for yourself to keep you healthy too.

I'm sure getting answers to your questions helped too, at least you know their plan of action for the coming days

love and {hugs} coming you way xx

Amii said...

Sending big hugs to you. Your story reminds me so much of my own, except in my case it was me laying unconscious with H1N1/pneumonia/ARD, and my husband worried out of his mind. Hang in there. It's a long road sure enough, but it sounds like you're coming through to the other side of this thing. It definitely makes sense to update here when you can, explaining it over and over again just uses up emotional strength that you need to save for you and D. I wish there was something I could do for you. Oh, don't let the nurses give you a hard time about HIPAA, either. You are the one making all the decisions for him right now, and you can't do that without complete and accurate information. Which you also have a legal right to, even under HIPAA, because you have his medical power of attorney. Keep asking your questions until you get the answers you need, and keep advocating for him. And never doubt that you are just as important a part of his care team as any of those doctors and nurses - more important in some ways. They can be replaced with anyone else with the right training. You can't.

Anonymous said...

I'm still here. Still reading and, for want of a better word, praying.

nursenikkiknits said...

I'm glad you have finally been given some kind of outline for the road ahead. I hope being able to write down everything that's happening helps to process it all. I think you are being a wonderful advocate for D. He is very lucky to have you.

by Teresa said...

Dear Denise, I'm so relieved to hear there is improvement. I can't wait until he's off the wires and tubes and can begin to recover.

We're both here thinking good thoughts for you two.

Love from Oregon...