Vulnerable.

That is the best way I can describe Kendall right now. Very very very vulnerable.

Sometime yesterday morning (while i was home with the big girls and Ben was up here with Kendall), she started showing us signs that she was not tolerating the infection well. But they were soft signs, things that could be ignored or explained away. Even I myself, without laying eyes on her, wasn’t hearing the concern in Ben’s voice. But walking into the room and seeing a much different Kendall than the one I’d left the day before quickly started changing my mind. Doctors were in, plans discussed, Operating Room called.

By the time we decided the pull the line and were waiting for surgery to come up, I was MORE than ready to get it out. Pulling the line almost always equals swift and drastic improvement. We signed consent, had a surgeon who seemed to really understand our concern regarding preserved line sites, and kissed her goodbye at the door. They let us know as gently as possible that she would likely come upstairs still intubated to give her a little break. I had already assumed that based on how horrid she was breathing prior to going down for surgery. As an experiment, I was cranking her oxygen to figure out just how many liters of support she needed to get up to “normal” numbers (98-100). I topped out at 10. That is insanity, especially for Kendall who RARELY shows “desats” or low sat numbers.
What I was not prepared for was that she would come back from the OR 280 times WORSE than she had gone down in. They believe that pulling the line caused the bacteria to “shower” or piss off the leftover bacteria in the body, as well as taking her off her pressers to switch over to her new line caused her to lose a TON of ground. We had easily 20 people in the room at one point, all working to get Kendall switched over and comfortable on the ventilator. But it wasn’t happening. And the respiratory tech was looking panicked, and the doctors were sounding stressed and I wanted to throw up from where I was huddled in the back of the room.

Oh my baby girl this isn’t what I had thought it would be like for you and i know you are tired but please please please keep on fighting because i know you can.

And finally I had to leave the room. The panic rising up in me was overwhelming. I know she has been very very very sick before, but the possibility of actually losing her has never ever ever been so very real. And I hated it. I was too scared to be mad. Really I couldn’t even find words to pray – just “Jesus be in there with her when I can’t. Be the breath she needs and be her heart cause hers isn’t wanting to pump at all right now and be in those doctors’ minds and hands and just please FIX HER and make this all go away”. I tried to tell Kendall to just slow down and breathe with me. Be like baby whales who float on their mommy’s tummy until they are strong enough to swim up to the surface and take their own breaths. I will tread water for you for however long it takes my baby, float with me, let the waves rock us back and forth and back and forth and follow my rhythm, in and out and in and out.

I tried to picture where she was at – and I got the most beautiful image (probably planted there from a text that I very quickly skimmed) – that she was sitting and talking with Jesus. That she wasn’t here, where her body was failing and being put through so much – she was in the most beautiful place you can imagine. And I tried to tell Jesus – “look, this is awesome but I NEED HER, her job here isn’t done, so please just tell her what she needs to come back here to earth and do and then send her back to me!” I’m not sure He heard me. But I knew she was happy and safe for that time. And as I wavered back and forth between that image and my own attempts to channel her to breathe breathe breathe with me, I suddenly started to feel the gnawing raw pain in my gut be replaced with peace. And this was by no means a quick thing. They worked to stabilize Kendall for almost 5 hours. This was a very very slow and creeping sense of peace. I didn’t have words to utter. Couldn’t walk down to her room couldn’t stand to hear the alarms anymore signaling that she needed help. Because they were already giving her help, there was not much more to be done. That is a pretty damn scary feeling.

I’m not sure I can describe to you exactly what is going with Kendall’s medical picture without scaring some of you deeply.  Know that at this point, as I write this, she is MUCH improved over last night, and honestly that is both saying a helluva lot, and not saying much at all. Her heart was very close to giving out last night, and right behind it are her lungs, kidneys, liver and brain.  She is in cardiogenic shock, septic shock, has ARDS (whited out lungs) again, is in both respiratory and metabolic acidosis pretty badly, kidney failure,  and everything we do to try to fix one of these issues affects one of her other issues. She was so vulnerable all night – every little thing was making her go backwards and it all kept being so damn scary. (sorry – i’m swearing a lot in this post. it’s kind of all I have words for right now) They had an attending from the Cardiac ICU come up who decided to test Kendall by taking her off the vent so we could suction her lungs, and ended up hand bagging her for ten minutes while we watched her oxygen saturations go lower and lower and lower and I think finally when she was around 40 she put her back on the vent and made her suggestions for “last ditch” meds we could try. Still, the vent settings only got her back up to 60’s for a long time, then slowly into the 70’s where she hung out for another few hours. She has a patch on her forehead and a patch on her back that tell us how her organs are perfusing (receiving oxygen), and those numbers were in the 60’s also (ideally much closer to the 90’s). It is all just so scary. I dont know what to think or feel when I hear words like “last ditch” and “ now we just have to wait for her body”.

So my parents came up and Ben and I and they would take turns talking to her on the side of the bed, praying over her, wandering the hallways praying our silent prayers and not wanting to say any words out loud because all that were left were scary words. We all knew what numbers on the monitors we needed to see so we would tell her to bring this number up or take that number down and finally around 4 am she started to listen to us, just a little bit, but enough that we could all breathe again. I could not would not leave her bedside. i NEEDED to see her numbers making the major turns they took last time when she was floating away from me. I needed to know she would come back and do it soon. I did not get the loud and huge answer i was hoping and praying for. But I got small little steps. Her HeartRate came out of the 190’s, her fever came back down, her sats climbed into the 80’s. I slept for about an hour in the chair at the foot of her bed before it was time for morning rounds.

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And the morning doctor came in and started changing things and that horrid alarm that goes off when a ventilator is not happy with its results kept dinging and dinging and i wanted to know what the hell he was trying to do – but it turns out he was making GOOD changes. Kendall climbed into the 90’s for her sats and her blood pressure ever so slowly has come back up above 100 so maybe now we can get some of this fluid to MOVE.

Unfortunately he also made her breaths much more forceful than she was handling last night, so there is some talk that we may need to switch Kendall to an oscillator vent this afternoon. I am not the best at describing ANY of this mechanical ventilation, but basically the oscillator would allow us to more gently open up her lungs vs the major push pull (like blowing up a balloon really fast and hard then letting it all out) that she is getting on the regular vent. I have asked everyone who will listen if this is a step backwards and am reassured that it is a step sideways, and one that could possibly help her turn the big corner that much quicker. she will remain acidotic as long as her kidneys aren’t working and her lungs are oxygenating quickly. If she’s acidotic, she cannot fight the infection and her heartrate will continue to be fast to compensate. If her HR stays too fast she risks cardiac failure. So you see the ugly cycle she is stuck in.

I wish this was full of more good news. It’s not BAD news per se, because there are some steps forward. But it’s not as GOOD as I had hoped it would be this morning.  Again our wise nurse reminded me “she didn’t get sick in two minutes, she’s not going to get better in two minutes”. While I feel it’s splitting hairs about the two minutes to getting sick thing (It was probably more like 7 minutes that she went from fine to oh-crap in) – she has a good point. It is requiring me to be patient. Wait on the Lord and renew my strength, renew Kendall’s strength. More waiting. More baby steps.

But we will take baby steps – baby forward progress steps. Heartrates that slow into the high 160’s, and then the mid-160’s and then the low 160’s. CVP’s that stay closer to 12 than 24. Blood pressure numbers in a nice high range but not too high. 110/60s would be nice. A temperature that goes afebrile and stays down there. (she’s 37.8 right now, which is the lowest she has been since coming to the hospital. Technically afebrile.) Urine that keeps coming slowly but surely. 10cc an hour, then 15, then 40.

Just keep doin what you do, KQ. We all got your back. Let the medicines do their job, let the ventilator do it’s job. You take that rest. You go see the world while you are drifiting at sea. I am holding on to you through that cord that attaches us, invisible and strong. Learn what you need to learn about what your mission here on earth is. I cannot wait to hear it.
Keep takin those baby steps, baby girl.

 

Keep on Keepin On.

T

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Comments

  1. Ah Terra, we’ve walked that walk only one time, but your words bring back those memories in a rush. Hang on. I wish I could bring you peace. Keep breathing, all of you! Sincerly, A Waiver Mom Warrior, Jody

  2. With all of our love, and all of our might – we are praying for you, Atkinsons. Every one of you. Thank you so much, Terra – that in a crappy season, you still find the fortitude to keep us in the loop. Your endurance, wisdom, and ability to keep it together when things fall apart is inspiring and humbling. I big huge squeeze of a hug is sent your way for your whole family.

  3. So many tears I weep for you. I will be your Aaron from far away, holding you up …so you can do what you need to. God in His infinite power will make it work! So from T-town…you are being committed to God through prayer.

  4. I remember these images oh so we’ll, not that long ago. You can do it Kendall, your strong and you can do it

  5. JT was in a really bad place with RSV and they used the oscillating vent it worked really well. He also told me that Jesus was holding him in Jesus arms. She is floating in Jesus arms.

  6. My heart just goes out to you whole family. Your amazing strength and faith. I only have possitive energy to send your way.

  7. This was not how things were supposed to go!!!! Keep fighting for that cutie! She asked me to hold her hand on the way up to CHW, so dang cute. I sensed her fear, her knowing what she was facing. She is a fighter. Lucky to have parents like you!

    Blue suit Heather

    • Heather – this brought me to tears. She is such a fighter. She never lets me know she’s afraid of this or knows how sick she is. Thank you for being there to hold her hand. Come see us in W515 if you get a few minutes.

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