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.

But the fighter still remains.

In the clearing stands a boxer and a fighter by his trade and he carries the reminders

of every glove that laid him low or cut him till he cried out, in his anger & his shame

“I am leaving, I am leaving….”

But the fighter still remains.

 

My baby – this fight has taken so much out of you.

I sit here tonight listening to you set off alarm after alarm in your utter and sheer exhaustion. I see it in your puffy little dark-circled eyes, and I sense it in the heavy way you lift your arms and I know…I just know.

You miss your sissies and you miss your own bed and you miss being at school with all your new friends and you just miss feeling “better”…I miss all of those things too. But mostly I miss them for you. If i could take all of this from you I would, in a heartbeat I would do it. But this is not how it works. YOU are the one with the story to tell my beautiful blue-eyed girl. YOU are the one who has grace and strength well beyond her years. YOU are the one who will be so mightily used by God…and YOU are the one who will teach us all about the important stuff of life, and how to live it fully.

It has been a long couple of weeks.IMG_7108

Our time in the “safe” walls of the picu is coming to an end. You are not quite out of the woods, but close enough to be home to finish getting better. You haven’t quite made “the flip” yet, but I have a feeling that this time it will be less dramatic than in times past. It will be a gradual returning of the strength you have lost, and the sparkle in your eyes. But it will return. I know it will. Because even after all these things have laid you low, the fighter in you still remains. And always will.

I have tried my best to fight for you this time…i hope I did a good enough job. I hope you are as proud of me as I am of you.

I hope you know that you are so very loved….not just by me, and daddy, and sissies. But by your grandmas and grandpas, cousins, aunts, uncles, friends…and perfect strangers around the world. All because you get up every day and you find something to smile about. You are amazing – do you know that?
I hope you know that you are so well equipped for this fight because of their prayers.

And because you are surrounded by an amazing team of nurses and doctors. You have made them all earn their keep this stay. you have taken their boxes and their textbooks and thrown them right out the windows in true Kendall fashion. But they have loved you and rejoiced with you and fought for you almost as fiercely as I do.
I know you are in so much pain baby, and I hope between me and your kickass nurses we can get you some relief soon. You fight so hard and it’s time for us to help give you a break from this fight for a little while. And then you can rest…and in a few days we will have you “better”. And then you can come home and fight there…

Sleep good my sweet baby girl. Rest well so you can fight more tomorrow~ Never stop fighting….
I’ll fight for you til my last dying breath~

I love you.

 

~mommy.

 

 

[Read more…]

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.

That first breath.

This morning, for the first time in her life, I got to witness my child take her first breath.

When she was born, she was whisked away from me because she was not breathing. She was intubated and extubated in the NICU without me there. I’ve never been present any other time she needed to be extubated for various reasons. But today I got my chance.

I woke up to her silently crying (the breathing tube has a “balloon” that blows up just below the vocal chords to keep it in place, so you don’t hear noises coming from your intubated child typically.) I went to her and held her hand and told her that soon it would be over. Our beautiful angel Rachel peeked in the door and said, i was waiting for you to wake up! It’s time to take out that yucky tube! I ran to put my contacts in and brush my teeth and by the time I came out of the bathroom a nice little party of people had gathered. Kendall needed some major suctioning in preparation for extubation, which she was NOT a fan of.  The tape was slowly unwrapped, the cheek guides peeled off and then just like that, it was out.

Inhale.

Exhale.

Whiney little cry.

it’s a girl!!!!

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And I sobbed and threw myself on her and her doctor, the only doctor I would ever want in the room with us at that point, put his hand on my shoulder and just held it there. I grabbed him in a huge hug and said you did it again! And then pretty much everyone in the room was sobbing because our respiratory tech knew that this was the first time I’d seen Kendall take her first breath and she said “you did it mom. you did it kendall”. So much joy and relief and praise and awesomeness in this room this morning I cannot capture it.

And then they were gone, and they had pulled the curtain and I just held my baby and sobbed. Cried it all out. Let the emotions of the past few weeks rack my body and let those tears flow and just held her and thanked God and told Kendall I was so so so proud of her and I loved her and i was so glad she was back.

I do not for one second take this lightly. i know far too many moms who have not gotten their babies back at the end of a long illness. i cried for them and their angel children who I am sure were watching over Kendall over these past couple weeks. I cried for Kendall and I cried for her sisters and I cried for her dad, grandparents, friends, family and thousands of you who have taken her into your hearts over the past couple of years, months, weeks.

And now we look onward and upward. We keep on keepin on.

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First up – new line placement tomorrow. I know a few of you were waiting for MRI results last night – and I honestly didn’t know if I would hear them. That report typically goes only to the surgeon who will do the surgery so he/she knows what she’s looking for. But this morning, after extubation, it was one of the first things that happened. The surgeon’s assistant came in and sat down with me and opened up the report on the computer and showed me the part where it said “upper extremity veins appear to be patent and normal functioning”. I don’t know if I can grasp for you the magnitude of those words. Patent (open/working). Not stenosed, not narrowed, not blocked by scar tissue. To say this is nothing short of a miracle would be to understate the case. This is beyond miraculous.  It does not guarantee that placement tomorrow will be “easy” because sometimes the battle is getting to those open veins. But do I believe that God has heard our prayers to open and restore some of those veins in her upper chest? Absolutely I do.  My God can move mountains and He can open up veins.
So tomorrow afternoon she will go down to surgery. Be reintubated. Hopefully be easily re-extubated. Hopefully not be in the amount of pain she usually is post-line placement (it requires a lot of pushing/pulling/tugging like you wouldn’t believe unless you’ve seen it happen.) We are trying to do a slow wean on her morphine that she has been on round the clock for over 2 weeks now (the drip started before she got super sick). 5 days of constant morphine has a high risk of withdrawal. 10 days has a nearly 100% guarantee of withdrawal. It is very likely that Kendall will need to go on methadone to ease her withdrawal symptoms.  But we will cross that bridge when we get there.

We are waiting on Infectious Disease team and Immunology Team to continue combing through her chart and coming up with a short term plan to go home on, as well as a long term maintenance plan for handling/preventing infections better.  We need to look deeper into her possible gall bladder issues and likely do a full abdominal CT still to make sure we aren’t missing anything in her gut that might explain the increased volatility of her translocation (when gut bacteria move into the bloodstream – the reason she has gotten so sick the last few months). We (Ben and I) have a lot of hard decisions to make about Kendall’s care from here. She will not be going home quite the same kid she was when she arrived here in July. But she WILL be going home, and for that there are not enough words to express my gratitude.

Today I am just soaking up her. Her little voice. Hearing the things come out that are so very much her, so very much the same little Kendall still in there, in her weak little body, her squeaky little voice. My heart is soaring today.

Thank you for being on this journey with us. It goes on from here~

 

t.

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.

The Ride.

And so this is what it is like to be Kendall’s mommy.
You are shaken awake at 5 am by your husband. He tells you that Kendall says she is cold but feels burning up and her heart rate is in the 160s.
You know instantly that this is not good. You leap out of bed into her room and you throw your body onto hers, try to stop the shivering try to tell yourself it’s just a dream this isn’t happening again. Hear her squeaky voice: “pray for me momma.”
So you pray, even though the only words that come to mind are “dear Jesus….” And then expletives. You pray with a moan that you hope God interprets as “fix this please”. And your baby, she keeps shivering so bad. These are the rigors, you think, and you remember the last time she had the rigors and how very very sick she got.
You call the pager for her doctor and you dial it wrong three times before getting it right because your hands are shaking. You leave a message that you hope is coherent because what you are really thinking is “don’t cry, don’t cry, you have to be strong and in charge right now.”
The doctor calls back and you are putting in your contacts and ripping off pajamas and you pray it’s not the doctor you don’t trust and you hear his voice and its him, the doctor you love and trust and know and just hearing his voice threatens to make the years spill over again, but he needs details not tears so you have a shaky conversation with him.
He wants her at the hospital ASAP and you think you can do it but you go into your baby’s room where she is trying to vomit and saying her legs hurt and the memories of her last sickness punch you in the gut and you don’t think you can get her there in time. Not to Milwaukee and not even to Edwards. Your husband is catching vomit and yelling at you to just breathe and think and move and DO and your hand shakingly again dials numbers on the phone.
9.
1.
1.

You’ve seen this in movies and on tv before and you think it takes them forever to pick up the phone and why do they need your phone number/address/social security number/favorite color just send an effing ambulance because last time your baby had a fever and was puking she tried to die and we don’t want that to happen so send someone here now with magical blood pressure meds and stop shaking meds and just fix it fix it fix it.
And about five years later they come to the door and are so calm so calm and you are NOT calm but you try to be for your baby. And they don’t know mito, don’t know what a broviac is, don’t understand that they need to have the medicines and get her to her doctor.
And finally finally you carry her to the ambulance, her and all her tubes and pumps and attachments and they hook her up to more wires and the lights go on and they get out of the neighborhood and the sirens go on and out the back window you see people parting, splitting like the Red Sea to let the ambulance through.
And you don’t feel attached to your self or your body and you thnk of how many times you have been the one parting to the side of the road to let through an ambulance.
The EMT tells the hospital your ETA is 7 minutes and you know that means they are going fast because the drive is at least 20 minutes on a good day. You pull in to the bay and they wheel your baby in to the room and a nurse at the end of her overnight shift slowly takes report and does not herself understand half of the words the EMT is parroting at her and you are THIS close to yelling at them to please please please hurry and start the magic medicine and call Milwaukee NOW. But they don’t know what it is like with Kendall, they cannot know that four hours before this she was sleeping peacefully on her side, hands under her cheek, heart beating steadily, breathe in breathe out, no sign of the monster lurking inside her somewhere.
They cannot know how fiercely you love and fight for this little girl and how they need to hurry and make her heart stop beating faster and faster and make the puking stop. It is pouring out her nose and mouth and the stoma around her tube and she fights the suction going into her mouth. Fighting is good.
Please Jesus put your hand on her heart. It is 215, now 60, now 180, now 51, now 236 and the machine can not stop beeping its alarm that something is wrong, wrong, wrong.
Finally the doctor comes in and starts to see that we need magic medicine and I get him to understand the bad words like septic shock and DIC and purpura fulminans, and he calmly asks for milwaukees number and I think we are finally getting somewhere.
Your husband walks in then, staying behind to explain to the sister still sleeping what is going on. You watch as meds are administered and blood is drawn and you explain again what red mans is and clean up more puke, and hold your baby’s warm hot little hand.
You try to answer texts and messages but all you can think is “get the big sisters home, get kaylen to a good place, fix my baby, please let us all be home again together soon”.
You cannot must not will not think about not bringing your baby home. You hear the tech call out a temp of 107 and you want to crumple but you can’t.
And time goes so slow.
So.
Damn.
Slow.

But in that slowness your baby finally catches her breath. The puking slows down and then stops. The alarms on the monitor slowly stop blaring.
God is in this place with you and he is holding your baby and holding you and holding your husband and holding your other babies and you are together even if you are apart.

You finally spot the blue jumpsuits of the transport team to Milwaukee and you breathe a prayer of thanks that your baby is doing “well” enough to go by ambulance because only super sick kids need the chopper.
A lot of hustle and bustle goes on to transfer a child from hospital pumps and monitors over to a mobile hospital room. You watch this with detached confidence. The experts are here now, kindly move out of the way slow people. She is going to be all right because the blue angels are here and they are taking her to the land of super hero doctors and magic medicine.
You are not allowed to sit in the back of this ambulance. There are three nurses who need to monitor vitals and give meds and watch your baby without you being hysterical.
You climb up in the back with her for a quick goodbye. Tell her to behave, tell her to get better, ask Jesus to ride in the back since you can’t. You give the nurses the low down on “nee-nees” (her binkies) and you get down and hug your husband standing outside the ambulance. Try to absorb his strength because you just aren’t sure if you have enough. Try to think of something to say to make you both laugh because laughing us better than crying.
Climb in the front.
You get on the freeway and see people in their cars, going to work, playing candy crush, applying makeup, eating breakfast. You want to tell them all- enjoy these moments, you could be in my place, riding shotgun in an ambulance speeding northward to save my baby’s life.
But you can’t.
So you stare straight ahead and wish the miles by as fast as you can and listen for the steady beep beep of your baby’s vital signs being broadcast from the back.
You are Kendall’s momma and you are her superhero and she is yours and you are both going to get through this.
Just sit back.
You’re on the ride.

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smile.

My baby’s smile.

such a small thing – i admit i took it for granted many times.

But seeing it again, after 7 long achey days – was so amazing. Truly amazing.

I find myself torn between wanting to rehash down to the most minute details what transpired this past week, and on the other hand wanting to never ever relive this heartache again. our nurses are so good, not only with kendall’s high level of care, but with my high level of emotional needs. They tell me that I need to and deserve to fully process it – to hear the scary words spoken out loud so that I can not be afraid of them, to know just how truly miraculous her recovery is right now and will be in the weeks to come.

I think I will try to sit down and talk with the admitting doctor up here on the floor, the ones who literally saved her life that night. i think I need to. Even though i already kind of know what she is going to say, i have a vague sense of how very bad things were that night – I need to hear it said out loud and I need to say it out loud.

But not today, not right now.

Today we are working on getting Kendall stronger.

Today we are looking FORWARD, moving onward and upward!

Kendall has been receiving physical therapy in the hospital since Saturday to try to help her muscles regain their tone and remember how to work together to help her sit up, move her legs, reposition and support herself, and get back to the walking, bouncing, crazy kid she was a couple weeks ago. PT involves doing some leg exercises (she hates them) and then sitting up without the bed or pillows around her for small increments of time. She made it a total of 10 seconds on Saturday, and 10 seconds yesterday. Today we will probably try for 15 or maybe 20 seconds. I tell you this to give you a framework for how very much this infection took out of her. She is improving FAR beyond everyone’s expectations – but this will be a long road. Or so they tell me. I know my KQ though.

She has this DRIVE for life that I don’t think i would have, faced with all she has been faced with. She does not know that she “should be” pretty sick still. She does not know that an X-ray like hers would have most kids poked with chest tubes to drain the fluids and possibly still intubated for breathing assistance. She just doesn’t let anything hold her back. And I know this about my amazing little girl.

Even when she is “well”, and she has to wear her backpack around all day, or get hooked up to multiple tubes at bedtime, or can’t go outside and play because it’s too hot – she doesn’t complain. She doesn’t ask “why me” or “why don’t sissies have backpacks and tubies”. Those days may come – but for right now, Kendall is just happy with who she is, in whatever form she currently is in. She is just filled with this joy and zest for life that is unrivaled, even in my other girls. They are all amazing girls for all they go through, don’t get me wrong. But Kendall’s FIGHT to live her life is her miracle, her legacy.

I just sit through rounds listening to all of her team be SHOCKED at the amazing progress kendall has made and is making, and nod my head in an “i know! i told you so!” way. She gave them all a shock last week with how bad she went downhill so quick, and they are just as shocked this week at how good she is doing. I credit her progress to a few different things: a.) it’s just who Kendall is, no two ways around it. b.) the amazing efforts of the team here and their knowledge of how to handle a crash of Kendall’s severity, and c.) the massive amounts of prayers covering her from around the world. None of this would be possible without all three of those things.

I hope, more than anything, that as you read Kendall’s story this past few weeks, that you know that.  That she IS a strong amazing little girl, that she is in the hands of some world-class amazing physicians, but that most of all, the glory and praise belong to God. I am not quite ready to mentally handle the reality of what all transpired last week, maybe in a few days or few weeks I will be, but what I do know is that Kendall’s recovery is truly miraculous. What purpose God decided to spare her for, I do not know. I hope it is because through her, many people will see God at work in their lives. I hope her story inspires you to hug your kids a little tighter, relax a little on the “small stuff”, enjoy time as a family together. i hope that by her example, you feel like you can push through that hard task staring you in the face. I hope because of her, you too are able to look adversity in the face and say “ I dare you to come after me. Just you try it.”

Whatever or however Kendall and her story have touched you – I’d love to hear it. I have heard from so many of you through cards, emails and facebook messages. Your stories touch me at my soul, give me a sense of strength and pride that give me the stamina to keep going through the exhaustion – physical, mental, emotional – that threatens to overtake me many times. So please feel free to share!

I need to get to an update about how her body is holding up physically, system by system, so i’ll wrap this one up for now.

Thank you for reading. Thank you for being here, being a part of our journey.

Keep on Keepin’ On – and remember, Hope is a Good Thing.

 

Terra.

jockamo Fee Nanay.

I promise that’s not gibberish. Well, ok it kind of is, but it actually means something.

You’ve probably heard at least one rendition of the “Iko Iko” song. This is a line from that song, which was traditionally a battle cry between Indian warriors in the Southeast part of the United States a million years ago. Or somewhere in that time frame. Anyways – jockamo fee nanay means “We Have Come to Do Battle”.

Tonite more so than it has been in the past – this is my resolution.

We have come to do battle. We have come to win. You better run, nasty little klebsiella bugs in my baby’s body – we comin’ fo ya!!!

Tonite my baby is laying calmly in her bed, her position determined for her by special pillows and props placed strategically by the nurses to ensure the best circulation. There is the constant beep of her heartrate, the constant “chug-chug-chug-chuggggg” of the 9 pumps running meds and fluids into her, the “puf-pufff…puf-puffff” of the ventilator machine taking breaths for Kendall. The room is dark except for the eerie green glow from all the pumps and monitors. Tonight there is no “Little Mermaid” movie on an endless loop. Tonight I am not frantically searching for the dropped nee-nee (binkie) for the 83rd time – because there is no room in her mouth for the nee-nee.It is just Kendall and her machines vs the bugs invading her body tonite.

Her doctors tell me that she won’t have much of a memory of this time – no PTSD regarding all the interventions she has endured the past couple days. I think that is a good thing, and while i’m not entirely sure I buy it, i’ll hold on to it for tonight at least.

In the morning we will see how her lungs are looking. She is intubated tonight mostly because she developed ARDS – a sucky but not entirely unexpected response to the sepsis and fluid resuscitation she needed because of that. Her lungs are almost entirely filled with white cloudy-looking fluid. Also concerning is that she appears to have a pocket of fluid trapped in her pleural space which may require a chest tube to drain. I have not personally experienced a chest tube, but I hear they are among the most unpleasant experiences ever. She is still extremely fluid overloaded – her abdomen being the worst (to me at least). She is not draining  this fluid out of her tubes, nor is it being absorbed into her bloodstream where it can be peed off easily (or at least, more easier).
There’s a lot that has gone “wrong” with Kendall to make her this sick – but the bottom line is that it is not all entirely unexpected. I cannot express to you enough how amazing the team we have here in PICU has been. I know some of you think I should have my honorary nursing degree – but this stuff – all SERIOUSLY above my head. Imagine trying to make dinner by using two tiny sewing needles as your hands. That is about what this team is doing – trying to fix some very big problems by finely tuning to the “n-th degree” things that are so miniscule that most docs in a non PICU situation would probably never bat an eye at. I am sure I’m leaving out so much info that so many of you are wanting – sorry. I’m exhausted. I added it up this morning and I’ve gotten almost 8 total hours of sleep since Saturday night. I don’t want to start going off about Kelly Ripa or Katy Perry or any celebs right now!

Tonight I am watching three numbers on the monitors that I would covet your prayers for:

1. Her temperature. She has had high fevers (103 range) all day. On the one hand, this indicates that her body is doing a bang-up job actually mounting an immune response and then trying to FIGHT this infection. On the other hand – fevers this high are uncomfortable. We want her to have relief, and I’d like to see her body start winning a few battles here – by lowering that fever a little bit.

Her CVP – central venous pressures. They have come down from the 30’s to the 20s and now to the 15 range. Ideally we’d like them to be around 7. I’m not sure i fully understand the thought process behind that being an issue, but I guess it can’t hurt to try.

And lastly her blood pressure. She’s still on the pressers so it’s going to be a little on the high side. But I’d love to see any or all of these numbers trending in the right direction when I wake up.

Please also pray that she stays sedated. She’s a kiddo whose body likes to chew through sedation meds like they are candy – so we cannot keep her on a sedation drop of versed like would normally happen. We have her on one continuous med to control her sedation needs, and two others that are dosed every three hours. In between those doses she can get PRN doses for breakthrough “wakeups”. I will say this – our first “wakeup” today was a sight I would like to never ever ever witness again. Kendall was trying to choke/gag/cough up the tube – but because it is anchored below her vocal chords, it is not able to come out that easily – so she was choking harder, face turning beet red – trying to scream but no sound coming out – it was horrifying. I’m sure it was “normal” but not for this momma. Thankfully there were three nurses in here within a few seconds of this happening and they were able to re-sedate her and calm her down. She has woken up a few times since then also, but nothing as horrid as that first one.
Anyways – I know this is scattered. sorry. Hopefully I at least can get this one to publish in the right month!!
a huge-normous thank you to everyone who donated to Kendall’s paypal. I definitely have enough to get to the competition and back this weekend, and get food for another week or so here (hoping we don’t need THAT long though!) You all are such an amazing blessing to me and my family~

Thank you for the prayers, for the texts, messages, emails. Thank you for everything.

Hopefully I will update more in the morning.

Have a great night friends – hug your babies tonight.

 

love,

terra~

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