4.10.2014

there and back again

 (coffee and bagel breakfast at the microtel inn)

 (pumps, lines, oxygen and such)

(Claire's art work cheering up the walls)

 (working it all out with pen and paper, and enjoying a sweet gift from a friend)

 (takeout burrito and magazines in bed)

 (jewelry shed for the night- my mama/child necklace and lucky ring, hotel key)


 (morning light, a new day)


(making happy dishcloths, her catheter bag and 'pleur-evac' pump always hazy in background)

 I never imagined it'd turn into such a roller coaster.  today is her 41st day in the hospital, and all but four of those have been spent in the ICU.  she is back there now, the ICU, and has been since Sunday.  I won't go into quite so much detail as I did with the last post, mostly because I've already written about it so much elsewhere and I just don't have it in me, but the somewhat short version is as follows:

I went to see her last weekend, she was in intermediate care.  Saturday night things started looking a bit weird again.  heart rate high, pulse high, fever spiking, a bit more confused and agitated than she was earlier.... things settled a bit by the time I left, she'd been given some beta blockers and ativan.  Sunday morning, she was unresponsive again.  CO2 had gone way up and other concerns (fever, etc) still there.  CO2 not resolved with bipap so I followed as she was moved back to ICU.  reintubated.  a new central line.  an arterial line for continuous BP monitoring (it was bottoming out again).  it was looking like she was septic, though they couldn't find the source of the new infection.  multiple new meds started for infection, BP.  as she came out of sedation from procedures she began to fight the ventilator, but things were looking relatively stable before I left.  I got a call an hour into my drive.  found a new pneumothorax, need an additional chest tube.  also- due to how much she was fighting the vent, they paralyzed her by running a drip of paralytics and sedatives.  scary shit, to be blunt.  but it made sense, I could see that.  a call to one of the residents later that night revealed some unpleasant news about her kidney function and liver, also heart concerns.  a soaring heart rate that didn't respond to shocks (wow, what? shocks?!) so they started a drip of amioderone.  it helped, things were stable.  thanks, of course, to numerous machines and drugs.  that is when I started to get scared again.  worrying that the rest of her body just didn't have enough fight left in it.  a decision to go back.  a day spent in worry.  news of a family meeting awaiting my return to the hospital on Tuesday.  after last time, the worst day ever, the words 'family meeting' terrify me.  thankfully (oh how thankful!) this time it was more along the lines of  'this is where we are, do you have any questions? and where do we go from here'.  also promising was that things were pretty stable without as much medication and organ functions were improving at a good pace.  whew.  such a relief, because I had, in the back of my mind, begun to think about those scissors again.

went in to see her, she looked good.  peaceful, really.  they had finally found her happy place of calm and awake.  thank you teeny tiny drip of fentanyl and propofol.  I had put in a request for no more benzodiazepines, if possible, before leaving over the weekend.  nurses backed me up and it was heard.  and it was making a difference.  she seemed stronger, better.  hadn't passed a breathing trial that morning because her CO2 went up again, but still, it was a much better picture than a couple days prior.  the following morning (yesterday) they extubated her again.  I wondered (asked several times, really) about a blood gas level, and why none was taken yet.  they said they'd be watching her closely.  she did great all day.  they removed the arterial line, the central line, she continued looking better and stronger.  I brushed and re braided her hair.  she seemed in better spirits, like she actually believed she was getting better now, instead of telling me ominously, as she had a week ago, not to hold my breath.

before I left I asked again about the blood gas, and about a bipap at night.  my concern was finally heard and orders were put in for both.  I felt better about leaving with that in place.  a call last night to check in on the blood gas revealed that indeed her CO2 was high again, but that the bipap should correct it.  a call to her nurse this morning (about an hour ago) revealed that she had just been reintubated.  O2 was fine, stats overnight were fine, everything else continues to look alright but her CO2 was tricky and her breathing was more labored and shallow.  of course it was.  she has extremely de-conditioned lungs.  lungs that can't practice and build up their capacity to breathe on their own again if she stays intubated.  I asked about a tracheotomy.  I am hugely in favor of it.  we've discussed it numerous times over the last month and I really think (no, I know) it is time.  past time.  it is the only way to baby her lungs back into working on their own, since with it in place she can be put on and taken off the ventilator easily and as needed.  a bit at a time, not this all or nothing that her poor lungs can't handle.

so.  I'm a bit fired up right now.  waiting to talk to doctor after rounds and planning to be pretty aggressive asking about tracheotomy and more.  the longer this goes on, the more I see the value of having an informed advocate there for her as often as possible.  and to be honest, I want it to be me.  and it has been as often as possible, and it will be again soon.

for now, a couple days of sunshine and gardening, meals and laughter with my girl and a vague and almost palpable sense of normalcy.  with calls regularly put in to the nurses and doctors, and hopefully just a minimal bit of shaky hands and heart.

and maybe even a post or two about other things, like the garden that is coming together or the children's swap that Claire is participating in.  happy things.  spring things.

all in time.






22 comments:

  1. goodness! it has been a roller coaster. normal days are going to be so extraordinarily sweet after all of this is over. the way you did your pictures really captures the mood... all black and white... with happy things in bold color... i love that you hung claires artwork in there.

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    1. roller coaster, indeed. I crave normal, ordinary days like nothing else right about now. it's funny, you're right about the photos, I didn't really think about it as I was taking them, the black and white vs the color.

      Claire's artwork is all over her room walls! and I've taped photos to her bed and to the walls as well~

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  2. Your mama is so blessed to have you advocating for her. Still praying Amanda for all of you.

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    1. thank you, Tracey~ she's got a good team of nurses and doctors too, but it always feels good to be there myself.

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  3. I continue to pray for your mom, and even though this is a very bumpy ride I am seeing three steps forward two steps back. You keep doing what you are doing because you know what is best! I agree with having an advocate :) Thank you for keeping us up to date.

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    1. thanks, Karen~ I agree, I think there are more overall steps forward at this point. now the trick is to just keep it moving in that direction!

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    1. I am trying! and mostly, I think, succeeding. especially when I'm there and have a focus.

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  5. Continued prayers coming your way. Hang in there. xo

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  6. wow. so much there. just sending you so much love along with the others. she is lucky to have you. sounds so very hard, Amanda. I just can't imagine how totally and fully engulfing it must be.
    You have lots of love out here for you. And I love your photos. Your self-portrait says so much. Beautiful.
    XO

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    1. Cory, thanks so much for your sweet words and for checking in. fully engulfing is about right~ I look so forward to ordinary, boring days in the future.
      xo

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    1. :) that girl. she's my best medicine ever.

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  8. Amanda, I've been thinking of you these past few days. Much strength, energy and some rest for you. I love Claire's drawing... bright and love. Thinking of you.

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    1. thanks, Marcela! can you believe I got Claire's swap package mailed out in time? SO much fun, and a nice diversion. will post about it soon. off to get some of that rest.....

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  9. Thank you for taking the time to write an update here. She is blessed to have you as her advocate. So important! Keeping you in my thoughts. xx

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    1. it's such a good outlet for me, writing. and while now I've shifted most of my writing regarding this experience to pen and paper journaling when I'm with her, I still feel the need to record some of it here. being her advocate is something I am passionate about, for sure. many thanks~
      xo

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  10. You pop into my head several times a day. No matter what I am doing ... I stop and pray. For your peace, strength and for your mom.

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    1. thank you, I so appreciate your kind thoughts and well wishes. I feel the love!

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thanks for taking the time to read and comment~