on hope and gratitude

(neither of these pictures are recent, they just both strike me as hopeful)

I should start by saying that my mom has improved.  that the end of this story is happier than the bit that follows.  but these harder parts, well, I need to get them out and try to make some sense of them.  it's not my typical writing in this space, all of this intensely personal stuff of the last few weeks, but it is what it is.  it is my 'right now' and so it's been all there is to say.  hopefully, not for too much longer.  but for now, here goes.

a week and a couple days ago, last Wednesday to be exact, was most definitely the worst day of my life thus far.  we'd been muddling through the murky, roller coaster days of my mom's hospital stay with no big changes to speak of but plenty of hope that it'd come soon.  it just had to come soon, her improvement.  well.  that Tuesday had been a very difficult day, one where her needs were looking like they were heading down the path of exceeding what the ventilator could do for her.  which would clearly not be compatible with life, not with her very sick lungs.  they weren't sure what was causing this sudden change in her oxygen needs and respiration, so they ordered a CT scan of her lungs to compare to one from several days before.  Wednesday morning I anxiously awaited news of the results from the doctors' morning rounds.  my Grandma Sandy texted me to say instead of passing news on to me as she usually did, they had suggested setting up a family meeting and could get me in on it through a conference call.  I found that a bit unnerving, and waited for the call.  while waiting I saw that a hawk had gotten one of our chickens, Rose.  her feathers were everywhere and I couldn't help but wonder if it was some sort of bad omen of death knocking on our door.  when the call came the doctor went about explaining that her pneumonia (now thought to be MRSA pneumonia and affecting both lungs) which had progressed to late-stage ARDS had begun to rapidly progress into pulmonary fibrosis and a great deal of interstitial alveolar swelling.  essentially, her lungs were largely incapable of receiving the oxygen they needed.  he explained that prior courses of steroids and other meds hadn't changed the course of her disease, that her lungs, having lost so much of their elasticity from the inflammation and fibrosis, couldn't handle higher pressure settings on the ventilator should she start to require them, and that she was in an extremely dire, acute, and critical state.  my hands shook as I tried to write notes down in the notebook that was supposed to have been my new personal calendar but early on in March had instead turned into a chronicle of her days in the hospital, which meds she was on, what her ventilator settings were and the names of nurses she had, etc.  I couldn't hear very well the other voices in the room, but knew my grandfather, his wife, and my mom's husband were all there.  mostly I just heard the doctor since he was sitting right next to the phone.  what I did hear absolutely clearly though was when my grandfather asked, in a broken and shaky voice "is she dying right now?", essentially giving voice to the question we were all asking in our minds but too afraid to let out into the world.  I sat completely still, jaw clenched, waiting to hear the response.  it came.  "in the next 2 or 3 days, no. but we will have to see how she responds to the steroids to know which way it will go. she hasn't responded to them in the past, but we will see."  I felt those words as simultaneous heavy blows to my stomach and chest.  the family coordinator nurse (someone I'd not even heard of until that day) called me and asked if I could get in touch with my brother, that he should come.  she also asked when I was coming back and whether or not my mom's brother and mother were coming.  I texted my employer and told her simply that "she needs to come in, I am leaving now." to let her know that yes indeed I needed coverage for the day, and for the rest of the week.

and then I tried to figure out how to pack for a trip to tell my mother, my best friend, goodbye.  Mike called his folks to let them know what was going on, careful to walk far away from me as he talked, as if I didn't know how bad the news was.  as if he could somehow protect me from whatever may be coming.  I knew I couldn't drive, so we were all three readying to leave for an unknown length of time.  I moved slowly, took a walk around the block when I started to feel like I was suffocating in the house and cried as I talked to a few neighbors.  I felt lost and like I didn't know what to do next.  toothpaste?  sure, maybe?  I don't know.  pajamas?  okay.  how about miracles, though- can we pack those, too?  I sat on the couch and told Mike that I felt like I was on the precipice of one of those 'before' and 'after' times.  as though that was my last time in my home before saying goodbye to her and ever after things were going to be completely different.  deficient in the worst way possible.  I wondered about my strange impulse weeks ago to take home the pages she'd scribbled on when she was still awake and writing on a clipboard.  pages where she'd written she was scared, wondered where she was, asked for Claire, and apologized to me for taking up all of my free time (yes, really).  I wondered if somehow I'd known those words were our last communication, something I'd briefly given thought to that day but pushed aside because I thought it was ridiculous.  during the two hour drive my mind kept making circles around the impossibility of not having her.  of having my daughter grow up in a world without my mother and perhaps not remembering her.  of all of the mothering and grandmothering that was going to be robbed from her.

we arrived in town, checked into the SECU Family House (an amazing nonprofit that provides affordable lodging and so much more for patients and their families) where I'd been staying off and on, and I drove over to the hospital.  her breathing was more labored than it had been over the weekend and she was still unresponsive, and the mood had shifted, but her numbers were looking a little better than they had that morning and I had some hope.  my brother got in late that night and, after putting on the gown and gloves we all now had to wear since she'd tested positive for MRSA, took two steps into the room and collapsed in a chair, sobbing.  after a half a minute or so I told him to buck up because she could probably hear him, and then took him on a tour of the machines and tubes and such, orienting him to this new version of mom.  we sat there together, with his girlfriend, for a couple hours.  there was a midnight round made and we stood in the hallway listening to the kind doctor telling us they were doing all they could and were considering sending biopsy slides across the country to "see if there are any heroic measures we can take to save her life".  again, it was put into perspective for me.  I asked if there was another road to take should the steroids not help and he said there wasn't one that they knew of.  I appreciated his candor, and his compassion.  I stayed a little while longer and then drove back to the family house, saying aloud to myself as I drove "my mother is dying".  I slept very little that night, waking from dreams to realize only seconds later that I was in this terrible vigil, that my best friend was fighting for her life and that she would likely slip away, still unresponsive, without my ever getting to see her eyes or hear her voice again.  that night I decided to find a pair of scissors in the morning to bring with me to the hospital, so that I could cut a length of her long red braid.  I thought about which articles of her clothing, which trinkets and such, I'd want to obtain for myself in an attempt to hang on to the physical parts of her.

in the morning Sandy texted me that she was continuing to slowly show improvement, but that the attending cautioned her to be very cautiously optimistic, because the steroids, especially the hi dose rounds, often showed an initial spike of recovery before the patient came crashing back down, unable to maintain that improvement.  I felt hopeful but also strangely protective of my heart, which had spent the last day so tightly wound with razor wire that it felt it too risky to breathe deep, too constricted to hope too much.  but, I did leave for the hospital without the scissors.

she looked a little better.  though her reserves were so low that any time they had to turn her or anything her O2 saturation would drop, her breathing rate would skyrocket, and they'd have to medicate her back into a calm state to protect her lungs.  I'd watch the numbers, worrying with each drop that it was that steroid high starting to crash down.  I had to leave the room for the first time ever.  I found a dark and vacant waiting room a few floors up and sat in the corner crying.  I needed her.  needed to hear her voice so that she could coach me through this as she had for decades with all of the other major events in my life.  instead I called my mother in law.  we spoke for a long time.  cried.  I told her I was worried about Claire.  should I bring Claire in to see her like this, if she didn't make it?  would they let me bring her in once my mom was gone, and extubated, so that her last time seeing her wouldn't be too strange and scary, but somehow peaceful?  would she remember her as she grew up, or would the memories of a four year old not be quite strong enough to stand the test of time?  and what of her hair?  should I go ahead and cut it?  and oh wouldn't it just be wonderful if she gets better and then that's just a hilarious story I can tell her later on.... how I nearly cut off a ton of her beloved hair?  after the call, and a fair amount of time spent just resting in the dark corner, lulled a bit by the hum of the cool and slightly vibrating pepsi machine, I myself 'bucked up' and went down to join other family members in another waiting room.  things were looking good, they said.  I was relieved but had that pinching feeling of fear in my heart, the one that wouldn't let me open all the way up to hope.  not just yet.

another day of rounds, and then two- with continued improvement and the beginnings of responsiveness.  doctors saying they were pleased, amazed even.  a stop to the pain meds and a huge tapering back of the sedatives, now only used when absolutely needed.  seeing the recognition in her eyes when I spoke to her, seeing her try to turn her eyes towards the photos I was showing her, shifting her head ever so slightly towards the sound dock when her favorite songs were playing...  visits from her brother, her mother, her son, her daughter, her father, her stepmother, her husband, her cousin.  continuing strength the next day and the next until finally, after passing a breathing trial on Monday morning they said they'd try to extubate her.  in the end it didn't happen that day.  they missed the incredibly brief window between awake/alert and anxious (even though I'd warned them it'd be brief and tried to clue them in on when it was coming and that it was the tubes causing the anxiety anyway so yes please just get that thing the hell out of her throat!) and ended up giving her some sedatives again.  it was frustrating, but I understood.  the lungs before anything else.  must protect those lungs.  Tuesday morning I came in anxious to see if she was having another breathing trial, worried about any setbacks, but there she was, just finished up with another passed trial.  the doctors came around shortly thereafter and debated whether or not to extubate.  said they were on the fence.  said her case was 'tricky'.  indeed, it is.  but it was nearing three weeks of her being intubated and I feared that if they didn't get off that fence we'd miss another opportunity.  the attending, thankfully, with a nudge from the wonderful respiratory therapist who'd been there with her more often than not, pushed the team to give her a try.  at least give her a try.  I was so relieved but worried it'd play out like it had the day before, wondering what they were waiting for.  minutes later the respiratory therapist came in (he, it seemed, was not going to let the opportunity slip by again) and I held onto her feet as she took a breath and he pulled the tubes up and out of her airway.  a nasal cannula was immediately placed on her and it was like looking at a whole new person.  a person whom, just days prior, I'd thought I was going to have to figure out how to let go of.

she enjoyed nearly five hours of relative facial freedom before they started to worry about her CO2 levels.  a blood draw confirmed her CO2 was elevated and ph a bit off and so she had to wear a bipap with full facial mask for the remainder of the day and night.  until she was able to breathe more deeply and cough effectively on her own, they'd have to monitor her blood gases.  she did not like the mask.  I think it made her more anxious than the ventilator had.  when I returned in the morning the nurse was concerned about her CO2 because she looked so sleepy, but I went in to see her and asked her if she'd been able to sleep (no) and if that was because of the mask (yes).  I told her nurse that I thought she was just tired.  he asked respiratory if she could have a break from the mask and they agreed, though said it'd likely be brief.  she was clearly more comfortable without it and for the first time in weeks I was able to communicate with her a bit.  she still had no voice, that will take a while, but she was trying and I was listening.  I was most definitely listening.  just a bit later I asked about the percussive setting on the bed that helps to kind of shake things up a bit in hopes of helping patients cough up secretions.  they okayed it and it helped her cough and then lulled her to sleep.  she woke up looking somewhat rested and to everyone's surprise she didn't need the bipap for the rest of the day, would only need it at night, and it turned out to be quite a big day.  bedside physical therapy, a swallow test (not passed, not yet), a feeding tube placed in her nose (yikes!), X-rays.  all of which I was right there for, with the exception of the X-rays.  talk of her improvement, murmurings of being moved out of ICU soon.  worlds different from a week before, which had been the day of the conference call.

she was in and out of a state of confusion and disorientation, and understandably so.  she seemed a bit miffed by the fact that we were all so excited about 'how well you're doing!!' while she was actually feeling downright shitty.  she let me know that her lungs hurt.  seemed worried that we all thought she was better but she could feel otherwise.  I explained to her the condition of her lungs, and how sick she was, though I'm saving some of the stories for later.  I am so incredibly relieved that there is a 'later' for her, for us.  she also seemed to want to be doing 'better' with everything.  with the swallow test and the PT, the communication, etc.  I told her no one expected her to do anything more than just rest and heal and to take her time.  she got agitated about being in bed, about everything, and told me she needed to do something.  I told her I could see that she wanted so badly for her body to be able to do things that it could not yet do, acknowledged her frustrations and fears and alternated between holding her hand and giving her space as her needs shifted moment to moment.  these were strange waters but I was so deeply grateful to be mucking around in them with her.

I left.  left town, even, and headed home for a couple days.  Mike's mom was in town by then, she had been for a couple days already, to be an extra adult around the house and help with Claire while Mike was working and I was away.  I came home to a warm dinner plate and family movie night.  yesterday the three of us girls took a trip to my favorite nursery and saw to some retail therapy of the plant kind.  it was in the mid 70s and perfect for working outside in the garden when we got back.  hands in the soil, bee-watching, exactly the kind of day I needed.  there has been good comfort food, some rest, some bananagrams, and good conversations.  today I bought a couple bouquets of tulips at the grocery store, feeling that there is much to celebrate and be thankful for.  tomorrow morning I'll go back for the day, and am excited to see her in her new room, a step-down room off of the ICU floor.  I'll bring along the banner that Claire and her nana made for my mom, along with photos of Claire holding it up.  I know by now not to have expectations, but to just be grateful, and go with the flow of whatever kind of day it is.  but.  but, my heart is now open to the idea of hope and possibility, knows a whole new depth of gratitude, and indeed is bathing in it nearly every minute.