Part of your world.

Last night on Kendall’s page, I updated that she was very upset at me for singing “Part of Your World” very loudly to her. Her nurses both joined in too, but it was mostly me she was mad at. It gave us all one of those weird “fun” moments you have to carve out in the PICU, where things are very rarely fun or funny. your sense of humor becomes very warped, your standards for funny are actually quite low, your reaction with laughter loudly inappropriate inverse to the amount of humor actually present.
One of our Kendall Krew posted the following that had me in tears:

Haven’t sung that song in years, but have always loved The Little Mermaid. When I saw your post I looked up the lyrics & if ever there was a song to bring her around, I think this is the perfect one. What you wouldn’t do for a day out of these unknown waters, spending time on the sand with your beautiful daughter, watching her stand on her own two feet again. You’ll get your wish…keep on singing & we’ll keep on praying. Thank you for letting us be a part of your world!! Sending my hopes for a peaceful, rest filled night!!

And for those wondering – here are the part of the lyrics she is referring to:
What would I give if I could live out of these waters

What would I pay to spend a day warm on the sand?

Betcha on land they understand, bet they dont reprimand their daughters

 

Oh she is so very right. What I wouldn’t give right now to be busy running around packing up our whole family for vacation. Kendall’s insane amount of medical stuff included. It hurts my heart so badly to think of our family being apart for our much-anticipated vacation. It hurts to think of them going with just daddy and it hurts to think of leaving Kendall alone here. We were so excited to have Kendall doing so well, hopefully able to enjoy the water park in her Dry Suit that was specially ordered from the UK to keep her lines and tubes all safe in the water. Oh so many plans and hopes for a great fun time with our extended family.  But life comes and happens and interrupts our best laid plans and the best you can do is roll with the punches.

So this afternoon I will go home and will help my big girls pack. I will put a smile on my face and excitement in my voice for them to be able to go and have so much fun! Tell them they won’t even really notice i’m not there because they will be running from waterslide to waterslide all day long anyways. i will try to not cry as I fold up Kaylen’s little underwear and make sure there are toothbrushes for everyone and that they all bring flip-flops. They endure so much. Why now this too?  I am so tired of ….well, i’m just tired at this point.

I’m beyond tired. I am physically, bone-weary exhausted. I am emotionally drained and my body hurts from sleeping on the boxes and my adrenal glands are about to give up the ghost from the non-stop pumping of adrenaline through my veins for the past week. My brain hurts from trying to stay one step ahead of Kendall and whatever curveball she is going to throw today. I am asked all the time “how are you doing” and I answer like i always do “I’ve been better but i’m doing ok”. Because really, that’s the truth. I’m functional. Well, in a hospital setting I am. I am jumpy and impatient and develop a slight tic of leg jitteriness when i’m out in public on the few occasions my family has been able to drag me out of here. I am not super excited to leave tonight. It is so very hard to leave Kendall period, but especially more so when she is still not “better”. My heart is always here in this room. My attitude is dictated by the rate and tone of the non-stop heart monitor she is attached to. Too fast of a beat and too low of a tone is a sign she isn’t oxygenating well and I am worried. A nice regular rhythm with an even tone and she is doing great and i can relax a little. The vent monitor that sounds like a boat horn goes off every once in a while and i jump out of my skin on those.

I want/need to see more of Kendall today. I need some sign from her that she won’t pull anything crazy overnight. I am so so so happy with her continual, slow, plodding progress – but I need to see my rockstar for just a quick glimpse.
I’ll know what that thing is when I see it.

The plan for today is to try to wean her back down to the settings we had her on last night on the ventilator when she failed her ERT (extubation readiness trial). At some point around midnight I guess they came in and made a huge turn down on her settings, so by the time they did the test 5 hours later, she was completely worn out, and failed it pretty quickly (and loudly! oy – those alarms are the worst!) So we put her back to all the settings she had been at prior to midnight (and really for all of yesterday) – and let her rest up. On rounds then, the fellow decides she wants to try weaning back to those failed settings (but not actually putting her in test mode), and seeing where she’s at this afternoon. Myself, her nurses, and the three respiratory techs on the floor all think this is pushing her too hard too fast when she’s showing us clear signs of not being ready, and they all tell me I have to be the one to say enough is enough. It is once again one of those emotionally draining places to be at. Do i put a stop to the vent wean settings, and delay her extubation? Or do I let tthis new to the team doctor who doesn’t know Kendall keep going and risk wearing her out too far again and just keeping on this roller coaster? I know which way my momma gut is leaning, but this is all new territory for me.  Ben will be here soon and he can help me sort it out based on how we know our girl and what we think is best for her.

Beyond that, we’ve restarted Kendall’s TPN (nutrition) again finally – so the hope is that having real food helps her be a bit more energetic and help wake her kidneys up more. She is making more pee – has lost over 2 lbs of fluid in the past 24 hours – but it is all coming because we are forcing it off of her with IV diuretics. Her kidney function is still abysmal, and this is delaying a few other decisions. (Is this not the story of this kids life? waiting on step 1 to be complete so we know how/when/where to go with steps 2-12)

Last week when we pulled Kendall’s infected broviac line out of her chest, a femoral line was placed in her groin. As you can imagine, this is not the most comfortable of places to have a double lumen line stitched into your leg, so her team is anxious to have a plan in place to put a permanent line back in to Kendall’s chest. However, Kendall’s vein access is limited due to the fact that her veins have never been very great, as well as scarring from multiple picc line placements and broviacs. God has been amazingly faithful and has opened up spots that appeared to be unusable in the past. The surgeon on Kendall’s team for this stay REALLY adamantly wants a new “venogram study” to see if anything has opened up in the past four months on the other side of Kendal’s chest that would allow us to place her new line far away from any possible little hiding out klebsiella. In order to do the venogram, we need to inject her  veins with contrast. Contrast does not play nicely with kidneys. Kendall’s kidneys are not playing nice with ANYONE – so we have to keep them in separate corners for now.  I guess a large team meeting was held last night to discuss whether we could do a placement without the venogram study, what kind of line we will put back in, what is the earliest we are looking at, and should we just keep Kendall intubated until surgery so she doesn’t have to endure two intubations back to back. I am not privvy to all the details of this meeting, but I do know we are holding off on the venogram until her kidney numbers come WAY down, and no new line will be placed until the venogram is done. We WILL be trying to wean Kendall off of the vent and possibly extubating her at some point this weekend if she shows us she is ready, and surgery is then going to be at some point next week if her kidneys get on board with this plan.

So really – again – we’re back to her kidneys holding up the show! Well, her lungs have a pretty huge starring role in this super slow production of “as the world turns” too so I can’t give too much credit to the kidneys. Overall, she is still improving and keeping her doctors happy with her progress. She gets a little farther “out of the woods” every day. That is a very good feeling. There is both a lot that goes on medically that I can’t even keep up with in updates, and yet, it seems like the grains of sand in the hourglass of time are being poured out in an anti-gravity chamber. Things are constantly being tweaked according to that 4-hour set of labs, but not tweaked too much so we don’t chase our tails in a circle. Antibiotics are changed, culture reports come back looking crazy so they are ordered to be re-run, potassium tanks, chloride jumps, creatinine is a critical read, hematocrit takes a hit, protein goes lower…..it is enough to make your head spin right off your neck.

and through it all we just wait. I sit on her bed and i rub her feet and i squeeze her hand and i wait for her to squeeze mine back – but all I get are little twitches here and there. She’s comin back online, slowly but surely. I just have to be more patient. Have to wait for HER body to catch back up from this huge huge huge battle she has been fighting. Oh my sweet warrior princess, you are battling so fiercely. I wish I could take it from you and finish the fight while you rest.  But know that we are all standing here, praying you on, cheering you on, singing you on.  I know very very soon you will be back to being part of our world. Please keep fighting.

love you with all of my heart.

 

T.

Life in the picu.

Realized that some of my updates may be somewhat confusing to some people, and thought i’d make a video to both help you understand what we are looking at, as well as to preserve it for the princess to understand exactly how very brave and strong she is.
It may be a little too graphic for some little eyes – because Kendall definitely is not able to move and it can be a little sad to see. So watch it with that precaution in mind, if you choose.

But otherwise, I present to you, room West515 – our home away from home! 😉

As always – if you have any questions about anything, feel free to ask!

thank you so much for your prayers and continued thoughts and love! Eacn and every one of you is so appreciated by me, by our family.
(and yes, it is totally ok to laugh at the part where i’m trying to show you how the hospital bed boxes get set up!)

 

Have a beautiful day and keep on keepin on!

Terra

 

 

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.

IMG_1618

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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