So it takes this.

This is what it takes to get me writing again.

Watching my baby girl fight with all she has against yet another life-threatening illness. Except right now we don’t know what she’s fighting. All i know is, she is sick. Worse than i’ve seen her in a pretty long time. I’m so grateful we have had this reprieve from this all-too-familiar tale of sepsis. But oh it makes it so much more brutal to watch her body fight through this again.

For a long time i stopped writing because i was so worried or concerned about what other people think of how i portray Kendall’s story, my feelings, my story, our story. There are so many reasons my fingers could not portray the feelings in my head and my heart. But now is the time.

My baby girl is a fighter. I am a fighter. We are all fighters in our own way – but this is our story.

So i will tell it as I feel it is best told.

 

Today, this morning, her story is this:

Her body is fighting well against whatever enemy is invading it, but it is a neck and neck battle right now. She is battling high fevers, vomiting on a pretty regular basis, has bad headaches that come and go, and in general just feels and looks miserable. Her labs show the battle that is being waged internally. She is being given meds to support her body – IV tylenol and ibuprofen alternate in constant rotation with enteral tylenol and ibuprofen – there are only a few minutes at a time that she doesn’t have one of those anti fever meds going in. And still hardly any relief from the high fever. Along with that she is getting two IV antibiotics that run nearly constantly, plus IV steroids, IV zofran, IV benadryl and fluid boluses in an attempt to keep her blood pressures up. All of these are intended to support her body in various ways so that her body can focus on just fighting whatever bug is attacking it.

And here’s your oversimplified science lesson for the day – since it’s been a couple years since i’ve had to try to explain what it is that we are actually fighting.

With any illness that you or I or our kids fight, our bodies will ramp up their defenses to kill the offending organism, whether it’s a virus, a tummy bug, a bad cut on our finger, whatever. Our bone marrow pumps out the white blood cells in order to go attack the enemy, the body furnace turns up higher (a fever) in order to try to kill the organisms with heat since most of them like the nice even temps of our bodies at 98.6 degreed fahrenheit, and our organs all kick into higher functioning in order to clear out the bugs sooner. Our bodies are amazing. They do all these awesome things to fight organisms it knows shouldn’t be in there. And sure, we can get REAl sick and feel REALLY miserable and feel like our bodies arent doing their jobs at all because it’s taking so darn long to get rid of our symptoms! But that’s because in order to do all those things to fight an infection, it needs a lot of support – rest, fluids, vitamins, good food, etc. Anyways – i’m digressing.

The point being – it takes a lot of energy for our bodies to do what they know how to do in order to fight an infection.

And for Kendall, her body doesn’t always have that much energy. So her body is being overtaken by the bad bugs, with no good guy blood cells to go do their job because her body doesn’t recognize “hey! wake up! we are being invaded!!!” Until her organs start having a hard time – kidneys, liver, gut, etc – and then catastrophic shock like symptoms start to hit. Those are the times when are going so do we call 911 or drive like a crazy person to the ER because she’s spiked a temp, is shaking uncontrollably, and getting very sick very fast when a few hours before we were just calmly eating dinner or whatever.

The problem is then that the bad bugs have started to do their damage to the internal processes and indeed even the organs that should be sustaining life and will continue to do so until we mobilize her immune system by adding in the steroids and antibiotics that help kill off the bad bugs. So that’s where the “race” occurs. Will the bad bugs do too much damage before the antibiotics come in and eradicate them? And do we even have the right antibiotics to fight those bad bugs because we don’t always know the enemy until the culture report comes from the lab saying what exact bug it is and what drugs it is susceptible to (we call this “susceptibilities”). 

Anyways – that’s the background of what worries me, why i sit here and watch her monitor numbers because if those numbers indicate trouble, it means we aren’t killing the bad bugs. If her fever is still spiking up, it means her body is ramping up to try to kill more bugs. Sometimes the antibiotics just royally piss off the bugs and they multiply in order to try to avoid being killed off. Then her body tries to make more immune cells and this wears out her other organs because all her energy has to divert to her bone marrow and so then we have to make sure her kidneys are still filtering pee because if they aren’t clearing out the fluids we have to dump into her in order to keep her blood pressures stable then all that fluid goes right to her lungs which is why she ends up not being able to breathe very well and we have to add support like bipap or the ventilator/breathing tube. All of that is a delicate cycle of balance and with Kendall, we don’t get any large red warning flags usually. We have me, who just has “gut feelings” and “momma instinct” that things aren’t right, and then i have to go and be a yappy litle puppy to the doctors in an attempt to get them to understand that we aren’t winning the battle and we need to do something more and we need to do it SOON.

 

and that’s where i’ve been at the past few hours.

Last night was rough. I was very worried she was headed towards intubation because i could tell that her body was not keeping up with the necessary cycle of balance. She was exhausted. Her heart has been beating very hard and very fast for a lot longer than it usually does (due to the fevers and extra fluids), and she was just starting to get worn out. She managed to remain pretty stable throughout the night and for that i am incredibly grateful.

She is looking better on the monitors and even on her labs a little this morning. Which would normally mean hey! yay! we are winning!

And yet, she just isn’t perking up like i would hope. She is still very sick acting.We had some talks on rounds (when the team of doctors and nurses caring for her all sit and discuss the plan for the day and how she was overnight) about what is still going on and what our plan is to try to help her feel better.

For right now, we are boosting her up in steroids to hopefully help her organs stop sucking all her energy and get her all around feeling better.

Her main two doctors and I have a high suspicion that we are possibly fighting yeast in her blood stream – fungemia, or fungal sepsis. She has fought this before, and presented very similarly, which is why our suspicions are high. Now, we could be wrong. And I hope we are. But the last time she had this, we had a similarly acting kendall. Lethargic, sick, but seemingly doing “ok” according to the labs. And then bam out of the blue, the yeast get real pissed off and just overtake her and we are scrambling to add supports to her. So those supports are all in place should she need them, but we hope maybe the steroid boosts will be enough to help her round the proverbial corner we are all waiting on.

Right now, Saturday morning, I feel ok with this wait. Last night I did not. Sometimes we just go based on how i’m feeling and what kendall tells us with her behaviors and in her own words. Right now i’m not getting a whole lot of words from her so it’s heavy on the momma instinct. And my momma instinct tells me we have a good plan in place. That I’m ok to go home tonight to see my other babies who i miss terribly. It is so hard when i have my heart split into two places, two states. I hate leaving Kendall, I hate not seeing my other babies. I need some sleep. I need a shower. I need to stop thinking. I was woken up this morning to go have a high level medical discussion while i was still rubbing sleep out of my eyes. My brain is on overload and it needs a break. my heart is on overload and it needs a break. I need to get other clothes. My darling children packed me three bras, a tank top that says “whiskey is my spirit animal”, a pair of sweatpants, and one long sleeve shirt. It’s made for some interesting outfits. I need to go in to work tomorrow. Hours have been in short supply the past couple weeks as is the nature of retail in January, and i more than ever need the paycheck. so i am torn. I am always torn. I am always feeling like i let someone down, no matter what i’m choosing.

Anyways – that’s where things are at right now.

Stable, but cautious.

 

I cannot thank you all enough for your prayers, for the love via texts and messages, for checking on me. To my friends who sent or brought food to me at the hospital because you know i am not eating or drinking enough, thank you. You are the reason i can sit at her bedside and watch numbers. Your prayers sustain us and i am forever grateful for them.

Keep on Keepin on~

 

T.

To the baby in the room across the hall.

Dear baby~

I don’t know your name.

I don’t know why you were here in the PICU, I don’t know how long you had been here.

I know only that today you became an angel.

Your room is dark now. Your beautiful pictures and the decorations on your door are gone now.

I hope you are running and laughing and playing up in heaven tonight, free of tubes and wires and beeps and pokes and all the things that you were hooked up to in your tiny crib.

Yesterday morning you started having troubles. Your room was a hive of activity all morning and that code light, that damn red code light was lit up above your door as doctors and x-ray machines and surgical teams moved effficiently in and out. My eye caught that of your nurse and tears welled up in my eyes. Because she is our nurse too. And I knew that look on her face. I knew the look on your momma’s face too, as she leaned against the nurses desk watching all the activity and feeling helpless to it all. And all I could do was pray…

They eventually stabilized you. When I left to go home, you seemed stable. I knew our nurse/your nurse was busy in your room doing the amazing work only she can do to keep very chaotic little bodies as stable as possible. Last night when she got off shift she texted me that it had been a rough day, and that she missed coming in to our room for her loves. I texted her back that it was ok – we sent her our love all day, and I knew she was right where she needed to be all day – taking care of YOU.  And I know she gave it her all. I know she poured every last ounce of anything she had left into you all day. And when she left, and she needed to, she let all of those emotions about how hard that day was flow as tears.

I hope you are able to look down now and see her and know what an amazing person you had taking care of you. All of them here are amazing. I saw your beautiful pictures – you were a smiling happy baby – surely you knew the love they gave you. I hope you watch over all of them as they continue having hard days, and continue coming in and doing what they do with smiles on their faces, even if those smiles are hiding tears sometimes.

And today I came back and realized your room was clean.

You were gone.

I tried to tell myself maybe you just got transferred somewhere. Maybe you had to go down to the CICU or maybe they flew you to Chicago.  Sure they did.

But see, I know that’s not the reality of life in the ICU.

I know what that code light means.

And I don’t know why today was your time, and two years ago when my daughter was in the room right next to yours, and her code light was going off and going off and going off for so many long hours…..why it wasn’t her time. I don’t understand why some babies make it, and some babies don’t.

I have had to come to terms with the fact that here in the ICU, as much as it feels like a weird microcosm of “home” sometimes….it also feels like the hardest place in the world to “live”. Because while many miracles and successes happen here….just as often there isn’t a happy ending.

But what I want to tell you is that you earning your angel wings was not in vain.

You made an impact with your little life.

You made an impact on me. And I don’t even know you. I hope I can find out your name at least. I’d like to honor you by at least knowing your name.

Because of that dark room with it’s absence of a teeny crib and beautiful pictures of your adorable smile, I will hug my babies tighter. I will grab onto life a little harder. I will complain a LOT less.  I will smile more often and I will forgive more easily and I will not take one single minute of life – whether it is here on the hard boxes of bliss or home in my own zone of comfort – for granted.

I wanted to be sad today, not quite like this. But i was feeling sorry for myself. Sorry for my own baby girl who was laying in the room across the hall from you. I dropped her sisters off at school and i was sad that I had to say goodbye to them and couldn’t tell them when i would see them again. Maybe in two days or maybe a week. I passed my little girl’s classroom and I started to cry as i realized she should have been sitting there at the yellow table, brow furrowed in concentration as she worked on her letters and numbers. She should be going on her very first field trip tomorrow to the horse farm.  She has been so excited for that trip! It hurts to think of how devastated she will be when she finds out she missed it.
But now I think of all the firsts you will have missed to, and i am glad for the ones my baby HAS experienced. I will try my best to not focus on the things she’s missed, and instead be overjoyed for the things she HAS had.

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Dear baby….you weren’t here long, but you made a difference. Your smile was beautiful and I will likely never forget it.
Fly high sweet baby girl~

 

T.

life is like a river.

That Garth Brooks….he sure knows what he’s talking about. “life is like a river, ever changin as it goes, and a dreamer’s just a vessel that much follow where it goes. Trying to learn from what’s behind, and never knowing what’s in store makes each day a constant battle just to stay between the shores….”

This is where we are at this morning.

Kendall Quinn crashed hard yesterday morning. I had to pick her up from school where her very shaken nurse, principal and vice principal were sitting with her in the office, knowing she was obviously sick but feeling helpless to do anything about it. Off we flew to the local ER where we were blessed enough to get a doctor who actually followed her protocol and got things moving quickly to help get Kendall more comfortable.

For those who have been down this road with us before, you know how it goes a little bit.

These times are rough.

Kendall spikes a high fever, and for our best guesses, we assume she has “gone septic”. Bugs, the kind that live in your gut and help digest your food and help keep you healthy, have once again leaked out of her gut and into her bloodstream and set up a party on her central line in her heart. She gets a blood infection and it rages…And oh the toll those battles take on her little body.

The fever, the rigors (intense shivers), the nausea, the vomiting, the headache, the feeling of your blood pressure skyrocketing then plummeting in an attempt to find happy medium….it makes ME feel horrible just writing it out and it is not even me who is feeling those things. It is my baby. My beautiful strong warrior child…

Oh how i wish I could take this battle from her. I wish it was me feeling those things, not sitting here helplessly by her side watching as her body fights with all it has.

But she is here now, in the best possible place for her to fight, our home away from home on West5. The unit. the Pediatric Intensive Care unit. Where the nurses know what she needs almost before her body knows she needs it. Where we have had a nurse standing at her bedside almost nonstop since the transport team of blue angels transferred her to this bed. Where we have a dedicated pharmacist and lab technician right outside the door trying to help us do anything and everything to keep her body stable, comfortable, give it the tools it needs to FIGHT.

And fight she is.

It has been a rough night. Her heart is beating very fast in an attempt to keep blood and oxygen pumping through her system and in response to the elevated temperature caused by the infection. We are burning through our options to help relieve the discomfort from her high temp and are awaiting right now an approval for round the clock dosing of IV tylenol. It seems like this should be a no-brainer, but it is not. The medication is in short supply and costs a fortune. It is right now the only thing left that is working, and even then, is only buying us an hour or so of “calm”. Then she goes right back into a shaking fit, moaning, gasping for breath, eyes closed but not sleeping…..the hard times.

Her labs are a mess, her vitals are all over the place, and we have no direction or answers as of yet. I know that this is part of this journey and yet I am impatient. I want to know we are doing something RIGHT for her little body, but everything we do right now is causing other chain reactions. It is a necessary evil, but one that is hard to deal with.

Sleep was not in high supply here last night for anyone.  She has hallucinations when the fever is spiking. Hearing her have these nearly lucid conversations that are meaningless is both hilarious and heartbreaking. Yesterday she actually had an argument with herself: “I got it – no IIIII got it!!!! That’s mine! It is not yours!! it is MINE! I had it first! I had it first!!!” And then late last night she had a conversation with daddy about his car being in “down-down shicago”.

I usually know more by this point. Today I know only that she is fighting, and fighting hard. I am hopeful and optimistic that she will make a turn for the better today – but I do not know this for a fact.

I do know that she is very sick.

i know that K2 and K3 were in her classroom with her when she crashed, and that they carried with them all day the burden of knowing she was going to the hospital. I know that Karissa, she of Cloud Gathering fame, asked me on the phone last night if kendall needed the paralytics yet or if she was still breathing on her own. Kaylen told me she felt sad and nervous all day but didn’t want to cry so she didn’t say anything to her teacher. Kealey had no clue anything was going on but came home to an empty house after school. Ben is supposed to leave this morning for a two week trip to California for work. My parents will need to arrange their schedules for the next few days to stay with the big girls and get them off to school. These are the balls I am juggling. And i want to make it better for everyone and I cannot do that. I cannot FIX anything right now and it makes me feel horrible.

so many of you read the updates and you offer to help us and you tell me to tell you what I need, what we need, how you can help. And really – it is so hard to know what to say in times like this. Because I feel like a broken record! We need your prayers – first and foremost and most importantly. God knows what we need even if you feel like you aren’t even sure what you are praying for….Knowing that so many of you are sharing Kendall’s story and reading her updates and are lifting our family up with your prayers – this helps in ways that are immense and hard for me to help you understand. To feel undergirded by the support of so many friends and family and even virtual strangers – it is an amazing feeling.  To those of you here in Milwaukee who offer to help – food. I do not eat well during these times. Especially when I leave the house with no cash. I am so thankful to our amazing nurse/friend who brought me a jar of nutella, some nilla wafers and some cokes late last night. That was supper and it will be breakfast. I am not good about texting and asking for help, or for people to go out of their ways to bring food to this hospital int he middle of construction hell. But having food here at the hospital is something I do not take for granted and if you are so inclined, please feel free to bring me anything! I do not turn food down. Ever. We are in room 512 and if you don’t want to battle the parking garage nightmare things can always be left at the front main desk for our room/Kendall’s name. Gas cards are another constant need.

But mostly – we just need your love, support, prayers. Sharing Kendall’s page with your facebook friends and family is such a boost to our spirits to see people from all over praying for our sweet girl, for our family. Your messages of love and support to me via text, messages, emails – these all help me in ways I cannot describe to you. I am not always able to respond – but please know i am at some point reading them all.

I will continue to update Kendall’s page with any information I do receive.

Sorry this post is kind of all over the place….not a whole lot of coherent thoughts are being formed right now.

Thank you for being on this journey with us – it is so comforting to know we are never alone.

 

keep on keepin on~

terra.

leaving.

my thoughts are random and jumbly right now, so please forgive me if this post is hard to follow. I am ecstatic that we are all working today on plans to finally be leaving this place. But what will it mean when we leave?

I had a very very very hard conversation with Kendall’s doctor on Tuesday afternoon.What he told me didn’t surprise me in any way, but saying the words out loud are not any easier. Kendall is going to die from another infection like the last two she’s had. it may not be the next one, or even the one after that. But at some point her body will succumb to the war that wages in her body between the bugs and her blood. I almost watched that happen before my very eyes this last few weeks. That Friday night that they removed her line – I don’t think i ever really addressed it here, or on facebook, or much of anywhere really – but Kendall was in a very very very scary place for that entire night. I need to do a separate post on that night because it is full of emotions and pictures and thoughts and feelings that need to be preserved but not quite ready to be processed out loud yet.

So to hear that she could die from another infection – not shocking. i’m not stupid. i get the dire straits my child is in.

BUT – I also believe in a huge God, who is one hundred percent in control of Kendall’s story. HE will be the one to write it. It is hard – so very hard – to cling to that faith. And yet, right now, that’s really all I have. Hope. And Faith.

We had another long meeting yesterday afternoon that was with more of her team and was full of much more hope. Plans were created, meds were tweaked, understandings were reached. We all know that we HAVE to buy Kendall some infection free time. We have GOT to break this current infection cycle. The cold hard truth is that there is not much we can do to PREVENT her gut from spitting out these bugs. We could maybe stop the klebsiella by killing it back with nonstop antibiotics, but we would put her at huge risk for a different bug to come roaring in and do the same damage. One of my main concerns is that there is a “hole” or leak/tear somewhere in kendall’s intestines that are allowing her body to leak bacteria out into her bloodstream at a faster rate than the average person, even the average person on TPN. And her doctors told me truthfully, there likely is. Any one of us could be walking around with tears in our intestinal mucosa that allow bugs to periodically translocate. But since most of us don’t have plastic residing in our heart to attach to, we don’t get deathly ill from it.  So kendall’s issues are likely a multi-pronged issue. She likely does have a VERY thin/weak intestinal wall from years of it’s “dysfunction”. Due to the way her body doesn’t always move food/formula though, it allows some “pooling” of lots of bacteria to occur. And lastly, when your gut isn’t healthy, your immune system isn’t healthy. So she has just pretty much become this perfect little storm of “sepsis” on a near constant basis.

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I think the biggest take-away from our meeting yesterday is that her team is committed to helping ME learn to interpret Kendall’s early signs of infection better. We KNOW she is going to spill some bacteria out. And her body HAS been showing us, albeit in ways that normally wouldn’t remotely raise a doctor’s eyebrows in the least, that it is fighting against the bugs, for a while before her eventual “crash” occurs. We may be admitting Kendall to the PICU quite often over the next few months for “tune-ups” or “rule-outs”. Traditionally, we have tried to handle some of Kendall’s little “episodes” at home, and clearly her body is showing us that it no longer has a tolerance for that. Now that is not to say that we can’t get her BACK to a good baseline, and of course that is everyone’s hope and goal – but in the meantime, we are going to need to baby her for a while in hopes that we prevent the overwhelming sepsis from occurring. Once we can get her stronger and out of this infection cycle, we will be working towards REALLY pushing her gut to tolerate enough fluids that we can look to get the line out. There isn’t a whole lot of optimism that it would be out once and for all – but everyone agrees that if we can boost her nutrition to an acceptable level, we can allow her to limp along for a while without a line. And just try to stretch out the times where she can go without plastic (and therefore life-threatening infections) in her body.

Will this all work? We don’t know. But again – we have HOPE that we are doing enough to support her body with a few new meds/better fluid support, and we her family have FAITH in a God who can move mountains and who can certainly move some little intestines.

So I am leaving this hospital a different person.  I’m leaving with a different baby. We are leaving in a very different place. Circumstances and things we’ve seen and lived through have changed us.  I used to be naive about just how “cyanotic” one could be and still be alive. I used to worry about my child’s oxygen saturations sitting in the low 90’s. i’ve now realized that sometimes you are happy with the 70’s. I used to not have to worry about things like fluid overload and kidney failure and organ perfusion.  i had a sick kid, a medically complex one even, but I didn’t have a SICK kid

And while I believe that the fighter that she is will emerge from this place and be stronger than ever – it is going to be a long road of recovery. it will continue to be two steps forward, one step back.  it will require that all the worrying and and lab-reading and micro-management I already do for Kendall gets kicked up a notch. It will likely require a few more disruptions to family plans and “normal” life. It will have some scary “is she getting really sick or only kind of sick” moments. 

But i refuse to give in to those fears, those dark places that threaten to pull me down.  I HAVE to believe and be strong for Kendall, for my family. i HAVE to place my fears in the hands of God and turn them into FAITH that the big picture is already in place. I choose to believe that there is a bigger story at play here than just my little world. The messages and cards I have received from so many of you on facebook, or in the mail – they tell me that this is true. Kendall is reaching people I could never have hoped to reach – simply by putting a smile on her face every morning. If she can do that, I can do that.

So that is what we will do. We will keep on keepin’ on.
Today has been one nonstop merry go round of discharge planners, doctors, nurse practitioners, nurses, trips to the car – I’m dizzy. Everyone is VERY on top of every little detail for going home this time because i think EVERYONE understands the stakes if a mistake is made. Kendall has two nursing agencies, five pharmacies, two therapy providers and two DME (provide medical equipment and supplies) that need orders sent to them, double checked, confirmation of delivery given.

At the end of the day though, things should be set for Kendall to finally go HOME. It is so surreal to even say those words because it has turned into Groundhog Day up here where we just keep doing the same things in the same space over and over and over again.  But sure enough, at some point late tomorrow morning, Kendall’s last dose of medication will finish, and we will unhook her from all her monitors, and we will settle her into her chair and we will walk out the doors of West 5 PICU. We will get in the elevators and go down to the skywalk and go out into the parking garage where Kendall will breathe fresh outdoor air for the first time in nearly a month. I will gingerly settle her into her carseat, and pack blankets around her for support since she’s still a little wobbly and her seat is a little less supportive than she probably needs. We will put her onto our home monitor and I will load the rest of our crap months worth of stuff into our car and we will finally finally finally be headed

HOME.

such a magical word. 

i am counting things down already. Only one more night of unrolling my mat on the boxes of bliss. only one more shower in the cramped little no-water-pressure shower in the family room. Only one more super ridiculously overpriced coffee, Only one more night hearing the reassuring, constant, steady-toned beep-beep-beep of Kendall’s heartbeat nonstop.  And yet – it’s only one more night of the “safety” of the big towers with all their medical monitors and devices. One more night of having our very own pharmacy steps away, with all the magical medicines that will keep my baby safe and alive if she tries to pull sassy stuff. One more night knowing her awesome team of doctors is just down the hall in case we need ANY little thing.  One more night of my big ipad on the wall revealing the intricacies of my baby’s cellular information via labwork and vitals in cute little graphs and charts right at my fingertips. It will be both wonderful and hard to leave this place this time.

I hope that all of these changes have made me a better person. i hope that i have more compassion, more patience, more appreciation of all the wonderful amazing “little” things that make my life worth living. i hope i hug all my babies more often, tighter, longer now. I hope I remember to look in their eyes and tell them all how amazing they are. i hope I dont let the sleepless nights and the burden of being Kendall’s doctor/nurse/advocate make me grumpy or withdrawn or a not-fun person to be around.  I hope I remember to appreciate how awesome it is to stand outside and breathe in fresh air.  I hope.

Thank you all so very very much for your prayers and love and support.  I feel like a broken record saying that but i seriously – i’’m at a loss for words to even BEGIN to thank you all. YOU (and your prayers and our God) are the reason we survived this month. My mommy and daddy who were here every single possible time they COULD be here, holding me up, feeding me food, letting me rant and rave and rejoicing with me when those numbers would improve or she’d squeeze our hands or she started sitting up….My friends who sent food and cards and meals to my house and love to my heart….Strangers who have decided to take our family under their wings and send gift cards and cards of encouragement….

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But most of all, thank you to my husband. my best friend, life partner, baby daddy. He has been an absolute rock for our entire family this past month. He has just been nothing short of amazing. I can’t even put it itno words without breaking down in tears. He has driven hundreds of miles back and forth. He has made plans to get the other girls from point A to point B and back again. He has dealt with school starting and dance starting and basically anything that would be an added stress to my life right now. He has sat nights at the hospital so I could see my big girls and he has learned how to navigate PICU machinery and he has painted his little girls toenails into minions as she lay paralyzed and intubated. he has held back his own tears so that mine could come rushing out. He has watched his baby girl being worked on when she was scary shades of blue and doctors were nervously filling our room because I could not bear to watch but needed to know what was going on. He has juggled work and home and hospital and girls and is somehow still coherent. If there is an unsung hero out of all of this – it is him. Please continue to keep him in your thoughts and prayers too – for his continued strength.

I’m not sure where or how to end this one. We are leaving the hospital and ending one leg of this long journey – and yet it seems like maybe the real journey is just beginning.

Whatever the case – we keep on keepin’ on.

 

terra.

A small Piece of you.

Oh my baby girl. I miss you so much. I can see you right there in front of me. I can feel your warm skin and feel your chest go up/down, up/down as the machine forces air into and out of your chest. i can feel your heartbeat and i can lean down to your ear and tell you I love you and I’m so proud of you. I know you are in there. I know you hear me.

But I don’t have my Kennos. I haven’t heard your little voice in what seems like eons. I miss your 6 am wake up calls to me from your bed saying “mommy its time to open da cur-tens I sink it’s morning.” and me saying “no its just a light, still nigh-nighs go back to sleep”. I would not tell you to go back to sleep. I would come crawl into bed beside you and turn on Little Mermaid for the 983rd time and I would meet your demands for certain colored nee-nees and put your blankets just the way you like them.

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I just miss you.

Kaylen told me on the phone through a tear-filled voice “mommy, kendall’s just my best friend and i miss her so much.”

Today is going to be hard on your sissies. It’s been hard on me and it’s been hard on your daddy and it’s been hard on poppa and meemaw too. It is not easy to see you laying there, completely paralyzed, letting machines do all the work, holding onto a week’s worth of fluid puffing you up to almost unrecognizable proportions. It is not easy to talk to you and get no response. So different from last time where you could mouth “mommy” to me through the drug induced coma. where you could  squeeze my finger if you heard my voice, where you could push away the prickly ball someone had brought in for you.

I just want a small piece of you, a token to put in my pocket,

and I will own that wild thing and that will make my happy.

I just want a small piece of you, something to put in a locket

and I would look at it daily and that would make me happy

Go on girl and see the world I hope you see it all

just please please please don’t forget to call.

 

Today after your sissies leave we will try to wean your paralytic a little bit. I am both overjoyed for this and scared for this. i want so desperately to see some sign from you that you are FIGHTING and you will take a breath above the vent. And yet I am horrified about the thought of you not doing it. Or feeling panicky. Or feeling scared of that tube down your throat. What do you see now, what do you feel, where are you floating? Oh baby please hear me that I don’t want you to be scared. i will be right here with you and i would take it all away in a heartbeat if i could. I would fight those bugs with my last dying breath for you I would take all that fluid and drown myself with it if i thought it would help you save you.

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Oh how easily my tears come sometimes. I try to be so brave and strong and keep this space, your room, free of negative thoughts or words. I keep this place a place of Hope, where the Holy Spirit dwells to administer to you and to all who enter here to care for you. But sometimes, the worries and the stresses and the fears – yes i will admit it you have scared me to my core this week – they all catch up with me. And all it takes is one word from someone, or the “bad” alarms going off in the hallway for a little too long, or the room gets too quiet and dark and there come the tears. I know some of my friends will tell me that is good, the tears are good I have to let them come. But how can I cry for myself when you are the one fighting? So I will be strong for you. I will not let you wake up to a place of sadness.
you did not ask me for anything this time, before you floated away from me. I try to not take that as a bad sign. Tell me what you want baby girl because I will move mountains to make it happen. I know you were talking about a  Little Mermaid birthday party with daddy before the pain overtook you and you drifted off to wherever you go when you cannot handle what your little body throws at you. You want a little mermaid party? we will have one. you want your hair dyed red? That’s fine too. You just come back. I will be here and you will be here and we will cuddle and watch whatever you want as many times as you want it.

We all just miss you Kendall Quinns. I know you are where you need to be.  I know you are not here in this broken little body right now, but I know you will be back soon, as soon as your nap is over. You are such a special soul. Do you have any idea how many lives you are touching? Do you have any idea how powerful you are, even laying there paralyzed? you are bringing families together to pray, reconciling lives and friendships, showing people that God is still in the miracle business. YOU are doing that. I could not be more proud to be your mommy. I am so honored that I was picked for this purpose. you have a light that shines from within you that is drawing people in. Everyone just wants to see that beautiful smile again, baby cakes.

So go on and rest. You’ve fought one huge battle, surviving the last 48 hours. And now the battle to get your body healed begins.I will be right here. We have a whole army of Kendall Krew behind us. Be good for your sissies today please. Don’t scare them or make it harder for them. Send them your love in the way only you can.
Love you boo-boo.
Ugga-mugga and nose rubs.

love,

mommy.

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.

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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

July 25

Last year, on this very day, Kendall came to the hospital to have her bladder surgery. She apparently has a thing for the PICU in July, who knew?
We are hangin out here, waiting.

Waiting for the bugs to grow, waiting for her smile to show.

Waiting for  the lab to call waiting for the shoe to fall watching paint dry on the wall all we do is just

WAIT.

I feel in a time warp. Part of it is not sleeping since Monday night except for a few cat naps here and there, and part of it is being back on this floor, where I can see the doorway where i used to stand watch over my baby. Part of it is being here where things are the same and yet they are different. She is very sick again, but her body is handling it better. Will it KEEP handling it better or are we delaying a crash? i know this is irrational thinking but it is where my heart is at. I watch her like a hawk, inspecting her body for the little red pinpoint dots telling us we are losing. I keep my eyes trained on her monitors, watching wavy lines, waiting for them to settle into a rhythm. i lay in her bed with her and hold her through the waves of nausea that take her voice away take her eyes away take her breath away and wish I could take that away from her. I try to hold her tight to me as the fever spikes and her body shakes and i plead with God to make it stop shaking her so bad. I try to will her body to make more white blood cells to fight the bugs that are eating through her blood.

I talk to our nurse and I talk to the doctors and I try to tell them that something is wrong, something more than just sepsis. Something else is bothering her, or something else is causing this and I know I sound like the yappy little annoying puppy but I cannot let them think they are fixing one problem and ignoring another. And her nurses see it, and the doctor who sees her every visit sees it and the fellows don’t see it but then her angel doctor comes in and he knows that this isn’t kendall and he HEARS me and he orders the medicines and fluids that will help bring her back for at least a little bit.

I am being heard.

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That is a good feeling. It is not solving the issues at hand but it is an amazing feeling to be heard among all the voices, and know that I am fighting the fight my baby girl cannot fight on her own. It makes the waiting and the sleeplessness and the achiness from sleeping on the wooden boxes that are a “bed” all worth it.
We are moving FORWARD and we are ready to FIGHT this bug and figure out what is making her so sick. It is a weird feeling, to feel this “euphoric” in the PICU, with Kendall still hinging on the verge of “oh crap” sick. But I think it was just the boost my spirit needed to know that we are fighting a good fight. We are keepin on. Jockamo fee nanay and all that.

I am still exhausted. I have a long drive home this afternoon so I can get the girls to their dance class and complete a photo session and get some sleep on a real bed and shower in a real shower. I stand vigil at my baby’s bedside until I know she is not floating too far away from me and then I take a breath from my own oxygen mask and come back for the fight. I will eat some actual refrigerated food and put on some actual lotion and use actual 2-ply toilet paper. These are the things you appreciate when life comes into micro-focus in the PICU.

So things are looking up. And i’ll take that.

Now let’s go bag us some bugs.

terra.

Thank you.

How do you say thank you to someone who has saved your child’s life?

How do you thank someone for using every ounce of their stored knowledge, of experiences past both good and bad that play into current circumstances?

How do you say “thank you for not giving up, even when it seemed like we were fighting an uphill battle”?

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Are there enough words to express your gratitude to the team of doctors, nurses, and ANP’s who stood beside your baby’s bed and called out orders and brainstormed new ideas and found impossible to find veins so life-giving meds could be administered in the face of overwhelming septic shock? To thank those doctors for taking the time during one of the scariest episodes of your life to explain a little bit about what was going on so that in your fear you could try to absorb and understand a little bit of the chaos surrounding you?

i don’t know how to do this. I do not know how I ever CAN thank them all for what they have done.

Our team here on 5West, in the ANP unit, has been a team of miracle workers.

My daughter was seen in the ER on Sunday May 5th, admitted into a room at 7:05. Her typical sepsis workup began, albeit a little slower than usual due to a packed house. My mom instinct had started going crazy somewhere around O’hare on our 3 hour drive north, and by the time we were sitting int he room for an hour with no more than a nurse coming in to get basic history, I was near panic. Once the PA, Matt, came in, he quickly assessed my panic level coupled with Kendall’s wonky presentation, and went to get his attending. Even through this time, the belief was that we were still dealing with sepsis, and plans were made to admit us up to our regular floor (11West). Labs were run, X-rays were taken, and vitals were cycled. And cycled. And cycled some more. At this point, near 9:30, we had two nurses in our room (I’m not sure if it was shift change, coincidence, someone else’s instinct, or just part of the sheer miracle of that night). Both nurses were quite unhappy with the vitals, mostly the BPs we were getting on Kendall. All I knew is that she was going downhill in a way I had never seen before, and I told the nurses I did not feel like going to the floor was the right choice. Matt came back in soon thereafter and said that he could call PICU for a consult. Antibiotics were running by this point, and things were continuing to get worse instead of stabilizing. Garrett, one of our angels that night, went to find Matt and the attending (whose name escapes me), and made an emphatic plea to get PICU down there NOW. The attending came in to discuss some of the labs with me, and when I asked to see them myself, I knew something was very very wrong. I didn’t know what, but I knew my daughters body was definitely not reacting in any way that I had ever seen before. She herself was starting to be more lethargic, spiking a high temp and having what we believe were febrile seizures. To say I was becoming scared is an understatement.

Things finally began moving quickly, and we were given a room on the 4th floor PICU, but that was quickly changed to the 5th floor PICU. i am not sure how or why that change was made, other than to say that God KNEW where my child needed to be. In the elevator on the way up to 5th floor, Garrett was continuing to cycle Kendall’s vitals, and they began bottoming out in the elevator. He was very concise in explaining to the admitting team, all of whom were waiting in Kendall’s room for her what was happening, and they hopped into action.

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I’ve had a medically challenging child for 4.5 years now. I know a lot. I daresay I know more about SOME things than many residents do. I know my daughter like I know the back of my hand. But I did not know what was happening right then. I do not know if every child is greeted by four nurses and two doctors and an ANP upon admittance, but Kendall was. I do not know what made this all happen – if it’s protocol, or just a smart doctor who could read between the lines of what we were seeing in the ER. But I know that we are talking about timing that was down to NANOseconds changing the outcome drastically.

The admitting team worked RELENTLESSLY on Kendall for three hours. Three long hours of horror and blood and medications and words that will have scarred my momma heart forever. Severe septic warm shock. Severe DIC. Severe acidosis. Not responding to fluid resuscitation. Extremely high levels of pressers and steroids. FFP and cryo and PRBC transfusions one after another after another. Ultrasounds to find veins and blood oozing out of every pore and stoma on her little body. Asking if I wanted her baptized right then and there. Our doctor from Special Needs coming in in the middle of the night to hold my hand and make sure I was doing ok.

My brain is still in protective mode. I cannot fully digest all that happened that night, or the days that came afterwards. The doctors and nurses on this floor working to pull my daughter Kendall back from the brink of death deserve medals, TV shows, million dollar checks. Far more than any “survivor” deserves their fame and recognition, these doctors and nurses and ANP’s deserve it. They are the reason my daughter is a survivor. Through the acidosis, ARDS, septic shock, DIC, necrosing tissues, intubation, bedside surgery – and so many more issues I cannot even think of right now – this team stayed by Kendall’s side, by my side, by my husbands side. When her sisters came to visit her, wondering why their sister was so sick or why she had tubes coming out of her mouth and every orifice of her body seemingly, they were by their sides too.

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I am not sure I will ever be able to fully put into words how grateful we all are to have our Kendall back.

I need to find some way to thank them, to grab them all in a huge hug and tightly hold them to convey my utter gratitude that goes so far beyond words. I know, though, that most of them would just scuff their toe in an “aww shucks” gesture. It’s what they do, right? It’s why CHW is #4 in the nation. Because every day, they save lives. But on this day, they saved my daughters life, and for that, we are eternally grateful.

I will forget names – I am sorry, it is somewhat a blur still. But these are the ones who stand out the most to me for all they did, and are still doing, for Kendall Quinn.

Dr Atwood – you stood in the back of the room with me calmly calling out doses of epi and norepi in a desperate attempt to get Kendall’s BPs up out of the “palp” range. Your calm demeanor and easy way of explaining to me what was happening without overwhelming me meant the world to me. You could see the fear in my eyes, could see me begging you to not let anything bad happen to her, to make it all better – and you resolutely answered that challenge.

Dr. Bane – you knew that art line needed to go in and you weren’t gonna let DIC and her crappy veins defeat you. You sutured that line into my fully awake and aware child’s arm and you were calm and collected the whole time. You brainstormed new meds and fluid bolus doses with speed and confidence and were instrumental in stabilizing Kendall that crazy night.

Kari – I cannot say thank you to you without tears filling my eyes. Not only did you help stabilize Kendall that night as the ANP on duty, but you worked tirelessly over the next few days to make sure she did not go down again. You watched her labs, listened to her lungs, watched her monitors, and helped guide the team to the right decisions. you have a quiet fierce strength about you that was just what my daughter needed.

Lindsey – I have not seen you since that night – but I know your amazing skills as a PICU nurse were a LARGE part of why she survived that night. Your ability to set up a quad fuse in 38 seconds flat amazes me still.

I know there were two or three other nurses in and out of our room that first night, along with a pharmacist who was probably getting a week’s worth of exercise running back and forth. To all of you – thank you.

Katie – another ANP hero. You were raked over the coals on rounds more than a few times, but you hung in there. You put all your knowledge to use trying to make sense of Kendall’s crazy labs that most definitely did not make sense. You knew when to push and when to let Kendall rest. you knew when to placate a very nervous mom who just wanted to spout random medical issues at rounds, and when to just let me talk and then flash your beautiful calm smile and move on to the next topic.

Jill –  yet another ANP hero. the exasperation in your voice as we were ordering our 27th (or thereabouts!) dose of pentobarb for my child who refused to stay sedated made me realize that you were all in. You wanted her to rest and heal almost as much as I did, and that is saying a lot. You are amazingly smart, and I am so glad you were on our team.

Dr. Scanlon – I am convinced that any other doctor, for those first few hard horrible days, would not have been able to do what you did – save our Kendall. I know I probably shouldn’t be giving you any more of a big head – but then I think, no. Your supreme confidence in your skills, your knowledge, your training, and your instinct ARE a large part of what saved her. You told me on rounds one morning that she was the sickest kid on your team (probably on the entire floor), and that she was taking up much of your brain space trying to figure out what we were missing. I knew then that we were going to be ok. Any doctor who works THAT hard to figure out a kid is a spectacular, life-saving doctor. I saw you standing at her door, just looking in at her monitors with that furrowed brow, cup of coffee in hand, a look on your face that told me your brain was going three hundred miles a minute through the vast files of knowledge in your brain of “severely septic kids”. Your gentle way of leading us up to the moment of intubation was just what we needed. It wasn’t a shock, it wasn’t a “bad thing”, it wasn’t a sign of things getting worse. It was just what we needed to do right then. And then your concern over how much more she was working, how much sicker she was getting – I could see these things on your face. You told me from the beginning – “I’m a straight shooter. If she’s not getting better, I’ll tell you. I’m about as subtle as a two- by-four.” I am sure there were moments you thought you would have to walk into our room with that two by four. But you never let ME get panicked. You never made me feel like you weren’t 100% in charge of her care 100% of the time. You knew she was a fighter and you let her prove her fight to us. And when she needed support, you gave her the support she needed. I will never forget the look on your face that last night you were on service – you were also on call. As I was growing more concerned, you were too. I don’t think you were ever more than a few feet away from her room that entire night. That comforted me in a way I still can’t put into words. Maybe it should have scared me to know that you were just as worried as I was – but comfort is the feeling i remember.

You took the info you observed, the info from the ANP’s and our nurse, and you even took input from me – some scared to death momma who just wanted desperately to try to retain some sense of control or understanding over the events spiraling out of my control. You listened, and you explained and you used crazy analogies that even I could understand and you helped me gain back some modicum of control. I didn’t understand her blood gases, but I understood that she needed more boxcars. In a word – you were nothing short of amazing, and I will forever owe you a debt I cannot repay. You saved my baby’s life, and I know it was God working through you. Do you know how many people were praying for you and over you those nights? I hope you do. I hope you are never faced with having to place the life of your child in the hands of someone else. But if you ever are, I hope that that someone is as wise, confident, and amazing as you are. These words are so inadequate, Dr. Scanlon, but thank you.  Thank you for giving me back Kendall.

Saving the most emotional for last – dear Rachel.

In spite of the efforts of everyone else – Kendall would not be here in the shape she is in without you. You are so far beyond smart I cannot even think of a good word for it. It is that wisdom that comes from your years of experience, but even more so from some place deep inside you, that is why Kendall is still “Kendall”. When I think of trying to tell you thank you, I pretty much just start crying. There’s so much to be wrapped up inside those words. You took my little girl on for the challenge she was and you fell in love with her like she was your own and you fought as fiercely for her as I was.  You offered your thoughts to the team and got things done for Kendall that I didn’t even know how to ask for. You knew what she needed hours before anyone else even thought of it. You talked Ben and I through every little thing that was going on, shared your experience with us, helped us find our “PICU voices”. You could see how much she was struggling to breathe, and how much we were struggling to accept that she was not doing good and you helped the doctor and ANP’s walk us through what we all needed.

When I walked out of the room as the intubation was going to begin, we hugged and I told you “take good care of her” and you said “ i promise i won’t let anything happen to her, i’ll take care of her”. And we both cried a little bit. You knew how much I needed that hug, how much I needed to know that someone else was there and understood. When we came back in to our baby looking very different with the tube in her mouth and the machine breathing for her,  you explained everything to us, you helped me brush her hair, you helped me realize it was still Kendall in there, she was just asleep. You spoke to Kendall through her intubation as if she was awake and conversing back with you. Your care and empathy for my child and for our family were amazing throughout that horrible time. When Kendall would wake up above the sedation and be fighting against that tube, you would instantly lay near her head and whisper things that I can only imagine were things about princesses and peaceful dreams. When I could not take the sight of her fighting and arching against that tube anymore, you took over as the voice and hands my child needed to hear. You would stroke her head as if she was yours, and for those moments I am so very grateful. When my heart was breaking in two as a momma and I needed to look away, you stepped in and took my place. Throughout that week, you did for Kendall what i could not do. You helped make her better.

I know you do this all the time. I know you are one of the most amazing nurses this hospital has. I know you don’t think you did anything outside of the ordinary – but for me, you did. For my daughter, you did. You are the reason she never floated too far out to sea away from me in those drug-induced dreams while she was sedated and her body was fighting a huge battle. I will never ever ever be able to thank you enough. You will forever be a part of Kendall’s story. Not a day will go by when I do not think of you and hope you are blessed. I cannot even find the words within me to utter my thankfulness for you and all you have done. All I have to offer are the sobs of a momma who is so relieved to have her baby back from the depths of that bad place, and the undying gratitude. Your fierce but quiet strength, your calmness in times of chaos, your beautiful smile no matter what was going on – these are the legacies you will leave us with from this stay. I pray that my daughters all turn out to be as amazing and wonderful of a person as you are.

At the end of the movie “Saving Private Ryan”, the main character returns to the graves of the men who died saving his life. He says to them, as i say to all of you who saved Kendall’s life this past week:

I tried to live my life the best that I could. I hope that was enough.I hope that, at least in your eyes, i’ve earned what all of you have done for me.

 

Thank you is not enough, but it is all I have.

Thank you for saving Kendall, for bringing her back to us. For helping her survive in the face of some really crappy odds, and do it courageously and with the ferocity we see her live every day of her life.

kq3

As we say on the Kendall Krew, Keep on Keepin’ On.

 

forever gratefully yours,

terra.

the crazy mom in W508.

Head to Toe, Part 2.

So when I left off part 1, I had just crashed on the couch and Kendall was stable-ish.

She continued to need high doses of the pressers (medications that work to keep your heart pumping and to keep your veins constricted enough to hopefully keep the blood/fluid in the veins and out of your tissues), and was receiving multiple units of FFP and cryo throughout that night. FFP and cryo are blood products that are specific components of your blood designed to help/aid in situations like DIC.

I was awake by 6 – just not able to sleep, too much activity going on, too worried about everything. We met the doctor who i will forever be grateful to for saving my baby that morning. He told me she was better, but nowhere near out of the woods. He explained to me that the septic shock had sent Kendall’s organs and vessels into a tailspin and that all the medications were working to try to keep her heart effectively beating and stop pushing everything out to her tissues. Her labs were “a mess”. She was in severe lactic acidosis which was causing some respiratory issues (for those who know, her levels were in the 40’s.). Everything we were trying to fix was just making something else worse. Dr. S did an amazing job of explaining to me what i needed to know, but making sure not to overwhelm me with things I didn’t need to know right then.

It was blatantly obvious that Kendall’s already crappy veins were not going to handle the stress of having all the multiples lines running into them. We had bi-fuses and tri-fuses everywhere, and still were having trouble having enough spots to run in all the life-saving meds, antibiotics, fluids, etc that she needed right then and there. Kendall was put on the schedule to go have a PICC line placed, possibly two. We were unable to touch her central line at that time because it had a quad fuse (four lines) lumen coming out of it running the pressers and steroids that were all that was keeping her semi-stable. Her arterial line was precarious, but oh so necessary, and only certain things were able to be run into that line. They were also running constant blood pressures off of that line because we needed to make sure the meds were doing their job. Another value on the monitors that we’ve been watching all week has been her CVP – central venous pressure. I don’t fully understand why our doctor was so worried/upset over this number, but i know he was. It somehow indicates the backup of blood in the liver because the heart is getting overstressed, blah blah blah. Anyways, we were hoping for a 7 – that is apparently “normal” in most normal folks. We were in the 100’s.

anyways – going down for a PICC line was a necessity. By this time we were having to use some strong sedatives and pain meds to keep Kendall in a calmish state, but trying to balance that with not suppressing her vitals any further than needed. When they were about to take her back for the PICC she was starting to hallucinate and kept telling me and her nurses to “get dat! get dat sing mommy! it’s right derrr!!!!!” reaching for some imaginary thing in the air above her. She was talking very strangely – and by that I don’t mean what she was talking about, but rather how her voice was. It was like there was so much pressure everywhere, she could only use single syllables in place of words. Luckily once she came upstairs from the PICC procedure, she was mostly conked out for the afternoon. But had started to be oh so very puffy. Almost unrecognizable.

Throughout this afternoon and evening, her doctor kept coming in her room, checking the big lab/trends board, pacing, thoughtfully pondering the numbers on the screen, then pacing back out of her room. Things were changed and tweaked, labs were being constantly ordered and then more things were tweaked based on those results. This board thing is amazing. It spoiled me. It is a 42 in flat screen TV that is touch screen. So you can tell it you want to see all the lab results for the last 24 hours, or you want to read the culture reports, or you want to see a graph of her fever curve and I’s and O’s (ins and outs, or how her fluid status is). For a micromanaging lab hoarder like myself – it was a dream come true. I was able to see within minutes how bad her labs were, or what the doc was worried about or if her acidosis was resolving. (They told me later i’m not supposed to actually touch it, but since I managed to not break it – yet – they were willing to overlook it!)

Kendall ended up needing a full blood (PRBC) transfusion at this point, and ended up getting two full units. Considering the absolute FIGHT we had to go through to get Kendall one a few weeks ago, I knew things must be pretty bad. however, I did find it mildly humorous that the doc referenced “the anti-transfusion movement” going on at our hospital. He was seriously just an amazing doctor – he could make me laugh or at least smirk even while telling me absolutely horrible news about my child and her medical status.

I know this is kind of getting disconnected here – but it was a long crazy week! By that afternoon, Ben was up there with me, and the girls had gone to a friends house, all together, which was a huge relief. I remember that we were both exhausted and decided we would take turns being up with her and sleeping. I took the first shift, mostly because I could not keep my eyes off of her and the monitor. My mom sense was still on extreme high alert, and even though I was exhausted i could NOT let myself rest. At around 2 I think I finally came and crashed on the couch again, and Ben got up and stood bedside with her for a few hours. I know I could hear her all night whimpering and thinking – I don’t think she’s breathing right – but I could hear Ben trying to get her morphine so I thought maybe he was on the right path. i was back up again at 6:30 and saw that he had made her wear her oxygen again. In spite of that, and at 2 Liters of support, her saturation numbers were crappy. She was in pain, grunting and struggling to breathe (even though it was hard to tell because she was so pudgy from all the fluids), and very mad at the cannula on her face. she kept tearing it off and would drop to the low 70’s for her sats. The doctor and ANP’s (nurse practitioners, huge in Kendall’s care here in the PICU) were in and listening to her, and all commenting on how clear and fine she sounded, but could not figure out her crappy sats. After an hour or so of this and watching her decline so quickly, a STAT chest x-ray was ordered. Within fifteen minutes of the x-ray machine pulling out of our room, they were in with a machine setting up to start Kendall on bi-pap support.  This all took a while to actually get set up, but by the time they did, Kendall was having none of the huge mask on her face. she didn’t have a ton of strength left to fight us, but she was crying which was making the pressure monitors go nuts, and her sat monitors go nuts from dropping. The respiratory tech was in here constantly trying to mess with the settings, turning this, tweaking that – nothing was helping. Morphine and Ativan were given, and the crying stopped, but she was still struggling for breath.

Dr. S came in with the whole team and explained to us that she was still working very hard, sending herself into a respiratory alkalosis (worse than the metabolic/lactic acidosis we were still struggling to correct), her blood gases (which i still don’t have a good working knowledge of what’s what) were crapping out, and that we probably needed to discuss intubation. We came up with a plan to give her an hour to prove to us she could turn it around.

I think I knew in my mind we were headed there. His words did not come as a surprise to me, but rather almost a relief. I was watching her work so very hard to breathe, and I was nervous and i was scared that soon there would be nothing left for her heart and lungs to do. I’ve seen this kid deal with pneumonia after pneumonia, i’ve watched her choke on her food and have scary moments. I’ve watched her go slowly septic and look pretty gosh darn sick. But I have never stood there helplessly watching her try to slip away from us, unable to do anything about it. I felt confident in the plan to give her a chance though, because if anyone could pull herself out a tailspin, it would be kendall. Our nurse Rachel was in there the whole hour and fifteen minutes of the “trial”, her concern for Kendall evident on her face.

And finally, i saw the team gathering outside her door and I knew. I knew what the answer would be.

“I think it’s time we give her the break she needs. It’s time to intubate her.”

to be continued…

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