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.

Live the Life You Imagined.

When I was young and full of idealistic romantic views about how my life and love would be one day – It never looked anything at all like what my real life is.

I loved this quote from Henry David Thoreau and I always “imagined” my life being about me finding myself deep in the woods on Walden Pond too, and being this amazing writer and living this quaint quiet little life.

Life has a funny way of shaking up what you thought it would be and making it into probably what you need, but never would have asked for.

Today I am torn between my desire to go double fist two Venti Starbucks quad shots and be the most productive person on the planet, and curl back up under the 14744-Live-The-Life-You-ve-Imagined covers for a good cry. I will probably end up doing some combo halfway in the middle.

Last week the beautiful daughter of my best friend passed away and I have walked through the Valley of the Shadow of Death with her over these past days. It is beautiful and heartbreaking and really super hard….yet I wouldn’t have been anywhere else in the world besides right there with her. In the hard moments and in the glorious ones. I have cried so much this past week that I feel dehydrated. And just when i think i’m done crying, something happens to set me back off. I have a whole other blog to write about all of that…

And in the midst of all of that emotional upheaval, I am preparing for Kendall’s surgery tomorrow. It is the one we knew would have to happen when she started having her line issues/infection a couple weeks ago. Rather than sit in the hospital for ten days, they released us to home on IV antibiotics to clear the infection and plan where and how they are going to either fix, replace or give her a whole new line. There are no other spots to put it. In almost 8 years of constant use and abuse no small veins should ever have to endure – hers are scarred over, clotted off, or otherwise just not strong enough to support what is needed of them. I don’t talk about this a lot because, well, it really sucks. I do my best to shield people from the harsh realities of what Kendall actually lives with, endures. Her battle is one of quiet yet fierce strength, and to overdramatize that serves no purpose. But this is where we are at. A world class surgeon scratching his head and unsure what his plan will be once they wheel her into the OR tomorrow. A momma who is scared shitless about the ramifications of this surgery. A little girl who has endured countless surgeries and procedures but THIS time has been able to voice her nervousness, her fears about how it feels to wake up with the tube in her throat, how bad it feels when she gets too much gas anesthesia (yes she uses those words!)

This surgery, more so than any other before, I have to leave in the hands of a God who has never failed us before. And oh how hard this is. It is SO unlike that peaceful little idyllic life I had imagined. I am in turmoil, there is chaos surrounding me in the logistical planning of my job, activities for my babies, not leaving them alone but not knowing what the hospital stay is going to look like, making sure that everyone around me has everything they need because that’s just what I do. I keep everyone happy and moving and doing what they need to do. But this….this feels overwhelming.

I know there’s all these happy little trite things you say to someone in my position. I know all that because I’ve said them myself to others. But oh how my heart hurts right now. These are hard days. They just are. There is no sugarcoating how scared I feel, how I cannot stop crying for reasons I’m not even sure of, I just know the tears fall on their own, how I don’t know how to just “fix” everything and make it all better.  I cannot sugarcoat that and I don’t expect anyone else to do it for me. I will find my peace when I quiet my thoughts and my heart. I know I will. Right now, I just need to get this all out.

And even in this, the journaling of these thoughts and feelings in my space, like I always have in the past – it is helping. I have held my pain in deep inside for so long, but this is where I feel happy…writing my thoughts. I will get back to doing it more regularly.
Today, I will pray over Kendall’s team of doctors that is meeting this morning to talk about our best options for Kendall’s line surgery tomorrow. I will pray that the God who has done miracles before will miraculously open her little veins, will strengthen them, will guide her surgeons steady hands to exactly where they need to be. I will pray for my little girl who feels a nervousness no 7 year old should have to feel. I will figure out how to pay for the stupid American Girl lego’s she is asking for for after surgery and I will put a smile on my face and i will rock her and tell her all of this will be ok. I will be momma bear to that know-it-all anesthesiologist and tell him no you may not use full gas for this procedure even though it’s easier for you. I will tell Kendall I will protect her always and no matter what.

In the words of Marcus Mumford (<3!)

” I will hold on to hope, and I won’t let you choke on the noose around your neck.

I’ll find strength in pain and I will change my ways

I’ll know my name as it’s called again.”

 

I will figure this all out and I will get through it like I always have in the past. Because it’s what we do.

I may not be living the life I had imagined, but I think maybe in a way I am. I always imagined that I would be the heroine of my own story, I would be strong, I would endure under any circumstances. And I think i’m doing that ok.

And now I have to go get that super strong coffee and start doing all the things I have to do.

Peace out party people~

 

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.

IMG_1618

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

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

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

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

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

 

Keep on Keepin On.

T

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~

The woods.

We find ourselves firmly ensconced in “the woods” of some kind. Kendall cannot seem to find her way out of the woods, and where she goes, i go. So we are wandering in the woods of septic shock, with DIC rivers, presser thorn bushes, access clearings, and gram negative bears.

My mind is still spinning from the absolute downward spiral kendall quinn has taken in the past 24 hours. i know there will be holes in this, forgive me. i’m trying to still piece it together into something that makes sense for myself.

Ok nevermind – it’s taking all day and I just need to get some of the more important details out –

Kendall was admitted to the PICU from the ER because she was tachycardic (HR in the 170-180s with very little activity), and because her blood pressures were starting to fall. This is a typical response to bacteremia (a blood infection), so the wiggle-on from the ER staff was definitely missing. I could not quiet this feeling, however, that this was more than just an average sepsis for Kendall. Something seemed very off. Luckily when her BPs started taking major nosedives, the ER docs caught on to that same feeling and Kendall was sent pretty expediently to the PICU (Peds ICU). In the elevator on our way up her BP’s continued to crash, and by the time we got to our room, the rapid response team was very quick to slide her onto their bed and get right to work.

For three straight hours we had 7 or 8 people in the room all working to get Kendall’s blood pressures to stabilize. We had one reading so low that there was no diastolic (bottom number) pressure. Medicines called “pressers” were started to attempt to force her heart to pump harder and get the blood pressure back up. Mind you I really didn’t have a total clue what was going on – Kendall’s never needed pressers before. But the head doc for our team last nite would calmly call out the orders to the others working, and then explain to me what she was doing, and why she was doing it, and what result we were looking to see on the monitors. I stood near the back of the room, in kendall’s eyesight but not in the way, until they seemed to have a bit of a grasp on getting her BPs to at least register. Then I went and stood and leaned over her bedside and just talked to her – about meeting Cinderella, and about her sparkly Cinderella shoes, and something funny Kaylen had said that day.

They started two peripheral IV’s on my baby via guided ultrasound – in her shins. Her blood was so thinned out at that point that they would just ooze. Her face started breaking out in petechiae – little broken blood vessels. Then her arms did. Then her chest did. Her legs just started turning purple from the toes up. Unfortunately at that point we were still very worried with the blood pressures that weren’t coming up. Every time the blood pressure cuff would squeeze, it would burst more blood vessels in her arm. They had to start an “art line” – an IV that goes into an artery. The doctor who was doing the procedure told me it was supremely painful, and that she couldn’t give kendall anything to sedate her because she was too precarious and they needed the art line NOW. I held my baby down while a large needle was stuck deep into the underside of her wrist, and the doctor dug and dug and dug that needle around, 5, 6, 7 times. No go. Got the big ultrasound machine, stuck 2, 3, and the 4th time more, in it went. And watery thin blood was everywhere. A wire then was guided in through the needle, and then a plastic catheter was guided over that. Through a hole in her wrist. AND THEN – they sutured it in. No numbing meds, no sedation, no pain meds.

someday – my tougher than nails kid is going to walk into a tattoo shop and ask for the most painful tattoo/piercing they have and get it without even flinching because she is hard core. I sat there cringing in pain for her. Wishing I could take it away, even half of that pain – anything but looking into her red, burst blood vessel, pain filled eyes and telling her it would be ok. For almost two hours I hunched over that bed, whispering in her ears about anything and everything that came to mind. I’m pretty sure I promised her the playdoh ice cream fun factory for being such a brave little girl for that art line. (Have i mentioned how much I hate playdoh? but right then and there, I would have given her all the playdoh in the world just to have her be ok.)

anyways – we got a call from the lab that her blood cultures grew gram negative bacilli in 6 hours. Even the PICU doc was shocked. It makes sense – gram neg bugs are notoriously brutal, and with how very sick she got so very fast, it’s not surprising that it grew out so quickly. We have gotten no further information on it as of yet, but I believe that the same bug is also growing out in her urine.

So she is sick. Very sick actually. I don’t like to admit this but she did have me scared last night. I have not seen her that sick since she was a baby. And even then , I didn’t know any better about how very sick she was. To use the past tense does not mean she is “better” now. The doctor was very cautious to choose his words on rounds this morning. She is showing some improvement, but is still nowhere near out of the woods from the “scary part” of this infection.  Well, at least, according to them she’s not. I know Kendall though. I see my baby girl in there, fighting with all she’s got. I think we are definitely approaching the edge of the woods at least.

She is coagulopathic – her clotting factor labs were horridly out of whack. This is part and parcel of ‘DIC”. Don’t google it. It basically just means increased risk for bleeding. She is still severely acidotic and her body is not doing a good job at all trying to correct it’s acid imbalance. She’s too tired. She was in gram negative warm shock last night, and throughout the day has made very very slight improvements to get out of that. she is not actively required fluid resuscitation (large amounts of IV fluids being pushed in very very fast in an effort to fill her body up with enough volume to stabilize blood pressure.

I’m exhausted – i’m not even sure if this blog post makes sense because I am falling asleep trying to type it.

We are so grateful for the family and friends who have made the trek up to see us today. And for those of you who support us from afar, we thank you. I’m not sure what else to say about kendall at this point because I don’t honestly know where or when or how to wrap it up. She is sick, very sick. She has made some slight improvements with a ton of supports in place. she will likely need those improvements to go with the TV show Kelly ripa owned.

^^^ I’m leaving that last sentence in there because I typed it as i was falling asleep – this is the kind of exhaustion i am dealing with people! Our doctor keeps telling me to go take a nap, lay down, get rest. But I cannot rest right now. I am WILLING Kendall to get better by my own sheer determination. And all of your prayers. If I go to sleep she might think it’s ok to not keep pushing forward. and that is not acceptable. She is going to get better from this. She has no choice BUT to get better.

What we need to do now is get her off of presser drips. We are in the slow precarious process of slowly weaning her down off of those. That process SHOULD be complete by the morning. Once we get her off of those, and her BP stays stable, we can start dumping her full of lasix to draw some of the four pounds of water weight she has gained out of her tissues. Her kidneys are still not super excited with life and are putting out this sludgey brownish orange drainage (I wouldn’t even really call it urine cause there is so little of it). It likely has old blood in it from the DIC yesterday. As one of her doctors told me – if you can see this bad of purpura and petechiae on the outside, imagine how bad it looks on the inside. We are also working to correct the massive lactic acidosis she is in, which will require us getting on top of her o2 saturations, blood gases, and sugars. Once those things are under control, we can switch around all of her med lines again and then start running antibiotics through her broviac and see if we can clear any bugs hanging out in or near that line. And THEN – once we have a better handle on the infection – we can go home!!! 😉 yayyyy!!!!!

so i may be a little ahead of myself with the home thing. But you really never know. She’s just as capable of rebounding quickly as she was of dropping so quickly.

I’m going to go try to take a quick little catnap. I am not even sure what all this says but i’m going to hit publish anyways. Hope it has helped out a few of you with your questions – if it didn’t, let me know how I can!

Your prayers are still so desperately needed, welcomed and appreciated.

 

Thank you –

 

the atkinsons

Merry ChristmaNewDisentines

So…..

It’s been a grip of time since I’ve updated so why not cram a few weeks/holiday updates into one, shall we?

IMG_5163 (Hence the title: Christmas, New Years, Disney and because it’s going to take me a few days to get this one written, we may as well throw Valentine’s in there too!)

I will not be able to do Christmas justice this far after the fact.

It was a good Christmas. (I’m saying that in my best “wind in his hair” accent. Except it’s not from Dances with Wolves, its the old Indian dude Staab from Legends of the Fall. This is why i shouldn’t blog after a bowl of Cherry Berry. Only my husband will understand what i am saying and he will do his little smirk which is about as much emotion as he shows, even though he does think I am hilarious. most of the time.)

ANYWAYS….

where was I?

Christmas. Good. See, I knew ahead of time that their big gift was going to be our family trip to Disney, so it made me very reluctant to get a lot of “real” (wrappable) presents. (Well, that plus a distinct lack of fundage to buy tons of presents. Splitting hairs.) BUT – I wanted to get them stuff FOR the trip as part of their gifts, except that their Christmas wish lists didn’t include “new underwear” and “car trip boredom busters”. It’s not a super huge deal, but I wanted them to get at least one of their Santa list gifts, even though I knew that a trip to Disney (and a whole extra week off school) was plenty gift in and of itself. We were extremely blessed by an agency that we work with for Kendall’s nursing as well as some amazingly generous friends who both helped ensure that some of the financial burden of providing a good Christmas was relieved. Ben has done an amazing job of utilizing some of his travel points to provide the hotel room for our two nights at Disney, a flight for Kendall and I, and we have been saving our pennies up to pay for the gas for the rest of the family to drive down to Florida. Christmas would not have been as Christmasy if it were not for our Christmas angels. Thank you is so inadequate – to all of you who have helped our family out on our journey over the past couple years. You all know who you are. I would fall short if i even tried to begin listing you out by name. I pray that God blesses all of you in the way you have blessed us. Anyways – Christmas rocked.

We were all so excited that we got to share Christmas with “sissy Christine” – a beautiful young lady that Ben and I first met when we lived in Washington and worked at our church in the Awana program. It is hard to believe that she has been like a daughter to us for almost 12 years now! And now she’s a momma herself! She and Baby Sophia came to spend a few weeks with us, and we had so much fun getting ready for the holidays with her! She is getting ready to leave and it is making me sad! It has been an adjustment having a 4 month old baby in the house again – but oh so fun! We are going to miss them so much!

And then Kendall had to go and get stuck in the hospital on December 30 (she had spiked a lowish gradeIMG_5191 fever that i would have likely let go, except we leave for disney in a week and i couldn’t risk that she would pull the stunt she pulled last time she had a lowish fever and needed an ambulance ride within a few hours!) So we trekked up to milwaukee, had a nice little 24 hour long visit (they wanted it to be much longer, but a. i needed to get home to pack and be with my family, and b. you DO NOT want to start the year out by owing your entire out of pocket copay in the first few days!) She’s getting tanked up on IV antibiotics and IV antifungals so we can hopefully “optimize her health” for her quality of life on the trip. In english, this means that we are treating a UTI that we normally would choose to not treat so that her typical UTI symptoms including bad pain, increased spasms, lethargy and nausea will be held at bay so she can enjoy next week’s magic to the fullest of her abilities!

So now we pack and prepare and hope we have everything we need for Atkinson General Hospital to hit the road!

A little bit about our plans:

Ben and the big three girls will all leave early Saturday morning to start driving to Florida. They will have most of Kendall’s medical equipment/supplies, all of our luggage, etc. Then on Sunday morning, Kendall and I will head to the airport to hopefully navigate the TSA nightmare with all of her fluids/pumps/medications that we will need for the day. Trying to pare this down to the bare minimum while making responsible decisions about any “emergencies” that may or may not arise has been a challenge. I think we have the letters of medical necessity/medical care plans/other paperwork all set, her emergency supplies, her daily supplies, her crayons/playdoh/minnie doll/glass slippers…

Ben will stop in Atlanta on Saturday night (because he likes to make it a direct straight 24 hour drive but his dad told him he BETTER stop and take two days to drive down or he would not be buying Disney tickets! Thank you Poppa Bob!!) and then meeting Kendall and I at the Orlando airport to pick us up on sunday afternoon. We will be staying at an off-site Hilton property that “has a view” of Disney’s Magic Kingdom on Sunday, Monday and Tuesday nights – going to the park on Monday and Tuesday. We debated about which parks to try to hit – but in the end decided that for our first trip, and not knowing how Kendall will do with the “overload” of it all, that we would probably get the most bang for our buck by hitting Magic Kingdom for  both days. I mean, Pirates is there, and that’s really all that matters, right? 😉

Just kidding. I honestly don’t even think the girls know there are actual RIDES there besides the teacups (because they see those in the disney commercials). I think they will all get enough enjoyment out of the activities at MK, and for Kendall, she just really really really wants to meet the Princesses. And Minnie. And Mickey. And Goofy. And Daisy. And….And…And… The parades with the characters will hopefully satisfy the “meeting everybody” requirement. I know they are going to love the trip no matter WHAt happens or who we meet or what rides we manage to make it on. They have no expectations so they will be easy to meet/exceed. It will be magical and awesome and I feel like I want to take nonstop videos and pictures to try to capture the absolute wonderment of it all in their eyes. i hope to be able to do it justice in the retelling.  I’ll likely be putting most of it on the Terra Talking FB page and tweeting a lot of little moments. (My tweeter is up on the side on the left if you aren’t on twitter regularly.)

On Wednesday morning we will be driving a few hours south back down to Ft. Myers to spend a couple days with Ben’s family enjoying the pool and beaches, and then Kendall and I fly back home on Friday, with the rest of the family following behind in the car. It was a rather impromptu trip, but will be oh so welcomed! The girls are very happy to be missing a whole extra week of school, and I am so glad that it is for a GOOD reason! They deserve the magic of this trip just as much as Kendall does for all she endures and has fought through the past couple months especially.

So now to finish the last minute packing, making sure all the stuff to fly with kendall’s stuff is in order, putting batteries in cameras, gathering up crayons and markers for the car trip. In the words of a character from my favorite book/movie (the Shawshank Redemption) “I find I’m so excited I can hardly hold a thought in my head. I hope the Pacific Ocean is as blue as it has been in my dreams  (that Disney is as magical as it is in my dreams). I hope…. I hope.”

Thank you to everyone who is or has been a part of us being able to mobilize and move out, getting TO Disney, helping with suggestions or advice on how to fully take advantage of our two days, EVERYTHING. Thank you Thank you Thank you to so many people.

I better get off of here for now and go actually finish packing or it will never get done!

I’m sure I’ll blog one more time at least before we go. So much I want to say and not enough time to sit and type it all out!

Have a super sparkly day everybody!

 

Terra

Round and Round.

Right now I’m waiting for rounds. Not very patiently. I need coffee badly. And a reese’s cookie for good measure. But I don’t want to miss the team rounding because they will give the update on what is going on as a cohesive report, vs the piecemeal info I get from random nurses and doctors who come in.

Anyways – things are still going well. Kendall continues to look really good – not at all “bacteremic”. Very very good news! So far her cultures from yesterday, both peripheral and off her line, are negative. We are almost at the 24 hour mark so that is also very very good news!

It is looking like the original bug growing is enterococcus, a gram positive bug that CAN be a hospital acquired bug. They are pretty sure it’s not a contaminant as the original hope was, but are still stumped as to how she managed to pick it up. She also has two gram-negative bugs growing in her urine that are still pending identification. Given the NASTY laundry we were dealing with on Sunday and Monday (and the lingering horrid smell in her bedroom still) – I am not shocked by this. Her urine was basically so full of mucus that it looked like she was peeing skim milk.

All of this is making her doctors think that what we did was catch an infection EXTREMELY early,IMG_4658 mostly only by luck (although I tend to think it was probably more God-directed than anything). And that what could be happening is that Kendall is translocating stuff out of her bladder AND gut – but that because she routinely has these kind of “off days” and autonomic temps, *I* am (claiming sole responsibility here) not getting her checked/treated in time, and it’s going systemic. Now of course her doctors aren’t blaming me like this, they say “how could we know? she’s had just as many times where nothing has been wrong as has been times where something is wrong” – and that is true. But still – the conversations have been more about what will our protocol be for getting her “wonky days” checked out a little better. If we can just put a stop to this current cycle of infections, everyone thinks we will be good to go. we had her infection free for over a year – we can get her there again!

(clearly I got a little more sleep and food since my post last nite – I am able to think much more clearly and be more positive about where we are at!) so anyways – that’s what I know right now, early afternoon.

The doctor we have been waiting to have consult on Kendall’s case just came in. And luckily he lived up to expectations! (this may or may not be because he told me that moms like me are to be listened to very very closely, because we will usually teach doctors a thing or two!) Overall, he was just a breath of fresh air. He had read the history of kendall’s latest infection cycle, and just had a creepy understanding of how and why little organisms work in the human body. He will be changing a few of her meds around, which will mean a rather crazy schedule at home (where we don’t have the luxury of nurses around the clock to do all the work!) He wanted to know if I was going to be ok with that. i told him that if i had to administer IV antibiotics every 2 hours I would do it in order to keep this line clean. He laughed at me a little and said “john (kendall’s special needs doctor) told me you’d probably say that, but I wanted to hear it for myself!”

So we will do the crazy med schedule and new line protecting regimen and hopefully get on top of this cycle once and for all. But our conversation wasn’t entirely focused on this acute situation. In fact, we talked for longer about WHY this is currently happening, and what can we do to STOP it. Most CVL moms know/dread the term “cycle line infections”. It is when your body does what Kendall’s is doing – continuing to spew out infection after infection, as soon as the antibiotics are stopped, a new course is needed. Some kids get into cycles very often – other kids rarely have a cycle, and still others never cycle, but get random infections. No one really knows how or why this difference is. But at the end of the day – Kendall is in a cycle.

He found it very interesting that while Kendall has had cycles before, we also had a year+ of having NO infections. The main difference for that? Kendall’s overgrowth meds. I think I’ve talked about these meds before – they are a bunch of super strong IV meds that we get compounded down into liquid gooey nastiness that we can push through her tubes in order to kill the bad/overgrown gut bacteria that likes to leak into her bloodstream. Due to the nature of the meds and the fact that we need them compounded at a special pharmacy – they are NOT cheap. Insurance covers a nominal amount (roughly $30), and Kendall’s secondary Medicaid won’t even touch them because they are technically “black boxed” meds. Basically this summer, we couldn’t afford her meds. And now we have her back in a cycle. Our special needs nurse sent orders to a local pharmacy up here to see if they can get insurance to see the fallacy of their payment reasoning. $250,000 for a monthly hospital visit, or $250 for a monthly supply of drugs. Pretty sure even a politician could figure out that math. We have two doctors ready to write letters of medical necessity to support her needing these meds and hopefully between all of this, we can get our out-of-pocket costs back down to an affordable amount.

IMG_4591 But those meds are just one part of the equation. We will also be starting the ethanol locking of Kendall’s line to ensure that the broviac itself has kind of “bad bug repellent” on it. And when i asked Dr. Havens how to stop the cycle of infections, he looked at me and said “ Stop the antibiotics”.

Alrighty then!

Basically what he means is this (I’m borrowing his analogy – cause i think its so great! And easy to understand!) – Pretend like your gut is a church. And the walls of your gut are the pews people sit in. You want there to be GOOD people in those pew – nice, pearl-wearing, praise-singing little old ladies who love Jesus. (ok i get that theologically this is not sound, but go with it). Good people in the pews of your church – got it?

well, antibiotics come in and make the good people of church leave. Just kills them, makes them get up and stomp out, take their friends with them – gone. And THENNNNn – that leaves room for all the BAD PEOPLE to come sit in your church pews. Tattooed, bike-riding, swearing, drug-dealing bad people are now sparsely sitting in the pews of your church, and letting all sorts of chaos go on in your church (gut). They run rampant, knock holes in the walls of the church, and now you just have a bunch of tattooed Hell’s Angels roaming around your abdominal cavity and taking cruises in your bloodstream. Kendall’s church does not have good people in it!!! So the way to STOP this activity, is to stop antibiotics. Drink Activia, repopulate your church with good people sitting in nice strong pews, and non-holey walls in your church, eat yogurt and leafy greens. Poop regularly – so you can flush the bad guys down the toilet. Literally.

Clearly, that is a great theory for guts that actually function well. Kendall’s does not. So our goal is to keep the bad guys moving, and reduce Kendall’s antibiotic use as much as possible. This will mean that we treat even less of her UTI’s than we already do. This will mean that she will have more pain again – but there are ways we can hopefully lessen the pain, lessen the risk of re-infection, and keep things moving forward. AND GET OUTTA THIS CYCLE!!

So what I came away with is that Kendall does have an immune deficiency – but it is one of functionality vs. one of a “traditional” sense where her blood cells don’t function well. Her immune SYSTEM (the T-cells and IgG and all that good stuff) that is actually functioning pretty well, given what it has to fight on a week to week basis. It is part of why she DOES bounce back from her infections so well once we get the right meds in place to kick the bad guys out of her bloodstream. That is a very good thing! Finally something her body does RIGHT!! But a major component of a HEALTHY functional immune system, is a healthy functional gut and bladder. That is how germs leave your body – through your waste. Kendall’s body doesn’t have an effective waste management system, and THAT is why she is in this current cycle. Microbiology – I do not understand at all. Gram negative, gram positive, rods, chains, bacilli, fungal pseudohyphae – gibberish. Poop? That i can do.  Keep her pooping and thereby we will HOPEFULLY keep her ridding herself of the bad guys. This is so much easier said than done that i can’t even tell you. BUT – it is a plan that I can understand. There aren’t a whole lot of warm fuzzy answers out there right now – but if this is as good as we can get – I’ll definitely take it.

We still have to have a few more conversations with her team as far as when and how do we react to Kendall’s “off days”. How do we know when to treat and when to sit back? Lots of questions still –but i feel like we at least have a compass heading now. SO much better than yesterday. Again I am blown away with the good care she is receiving here this visit. She somehow convinced her student nurse to take her to the playroom today.IMG_4674 Honestly i am not sure how he managed to convince his instructor that he could only work with Kendall today, and that playing tea party with her was part of the care he ‘HAD’ to give her…But up and down the hallway I can hear people walking by the playroom – oh look! Kendall’s in there! Hi Kendall! How are you Kendall! I am SO relieved that she feels good enough to go play in the playroom, as that rarely happens when we are here! She is definitely getting ready for her Halloween character – Cinderella – by being in RARE princess form and ordering around basically everyone who comes into our room! If it wasn’t so brat-tastic it might actually be cute. Our main doctor (her special needs doc) actually sent a text to her team yesterday when she arrived in the ER:”Kendall is in the ED for the + cultures. She is just TOO CUTE! Wanted graham crackers. I got her some. Admitting and ordering abx.” (One of the nurses showed it to me!) And this is why she thinks she can get away with anything! Being cute is actually part of her charted record!

Anyways – obviously a much better update today than yesterday. That is mostly due to your prayers. So thank you for that! Even I feel much better, lighter-hearted even, than yesterday. It is by the grace of God that our doctor ordered those cultures. If he had not, we would have gone on our merry way with me continuing to chalk Kendall’s bad days up to a brewing UTI. The bugs growing in her urine are QUITE nasty (but not entirely unexpected). If we had let her body continue to get weaker from a presumed UTI, when in fact it was already fighting a bloodstream bug, and those UTI bugs leaked into her bloodstream….oy. I shudder at the thought. It would not have been a pretty picture. I am so beyond grateful to God for His constant protection over Kendall, even as I felt like He was leaving her hanging, leaving all of us on our own to fight another infection – it turns out that He had even MORE protection over her than I thought. you just never know sometimes – how even the darkest road you are on may be the very path you need to take to places beyond your imagination.

I hope and pray that all of you are having beautiful Thursdays.

We’ve been asked what do we need by so many of you wonderful friends and family – and honestly, I’m sure I could rattle off a list if I had enough time. But really, I am happy and blessed and content right at this very moment. I have a sleeping baby (FINALLYYYYYY!!!!!!), who is receiving her needed medications as she sleeps. I have a reese’s peanut butter cup cookie from the bakery downstairs. But most of all, I have HOPE again that she will get out of this cycle. Be her happy, pain-free, silly, strong beautiful self again. HOPE that we will be together again as a family by some point this weekend. It’s a good feeling, this hope. It covers an awful lot of wants/needs/desires. It does not mean that everything is fixed, or that we have solved all of our issues. But the warmth of the hope in my chest at this very moment – it is enough. Dayenu. (<—that links to a blog post i wrote almost exactly a year ago. It still holds true today. Maybe even more so. Go check it out again if you don’t remember it.)

I’m going to try to catch a few winks of sleep myself while Kendall is down for the count. She will want to go IV pole skateboarding later tonite (fun sport, you should try it sometime!), and I may try to go hunt down some non-moldy food in the cafeteria too. Thank you all for everything – the words of encouragement, the notes on facebook, the texts, the phone calls. I know I am so behind on responding to everyone and everything – but know that I read them all, and am encouraged and touched by every single one of them.

If things change tonite, i’ll try to do another update. As of right now, I have not heard of any growth past this mornings negative result, and I am hopeful that it will remain so. We will continue to work on tweaking the meds and the schedule tomorrow, and hopefully head back home sometime on Saturday or Sunday. Blessed be the name of the Lord.

Love you party people!

 

T-crest.

(and yes, the pictures are all random ones I’ve taken over the past couple weeks – nothing from in the hospital! my phone is currently full. I need to dump pics off of it in order to take more. anyone want to donate a 64gig iPhone to me?????? ;)  )

GroundHog Day.

No, not the actual day. the movie. Tell me you’ve seen it. If you haven’t, go Netflix it now or something.

Anyways – that’s what it feels like around here. Like i’m living the same day over and over and over again. Major time warp going on right now in my old crazy brain!

For the handful of you who read this blog but not my facebook, Kendall was admitted to Milwaukee this morning. The chain of events leading up to me typing that sentence is so convoluted and frustrating that I’m not even sure where to start unleashing the fury of my frustrations. I think in my last post I referenced the “old wives tale” among special needs moms about packing a bag to ward off the admission fairy. Well….apparently we need to work on this urban legend. Because while bringing the bag DID indeed work – it may have worked too well. In spite of my “misgivings” about her wonkiness of the past few days, and the fact that it shocks almost everyone we talk to that she gets discharged on the same day for this procedure, we did in fact finally walk out of the hospital on Monday evening, and got home around 9 pm.

Now I should back up even further and say that when they called me back to PACU (basically its the first stop recovery room right after surgery, it’s one huge open room with little stations where they park kids and monitor them til they are deemed ready enough to go to the actual recovery room) – it was a shitstorm flurry of activity. Typically I have to peek under blankets to find my child – not yesterday. I knew right then that something was up, but it took a few hours to get the full story. Basically, when the surgeon pulled the picc line out (the line she has had in her arm for the past three weeks which has been the bane of everyone’s existence on manhattan street), it had a lovely clump of “suspiciously fungal mucus” clinging to the tip. From the reports i’ve been able to gather from various nurses, the surgeon basically demanded to have kendall’s main doctors on the phone right then in the middle of surgery and proceeded to rip them up one side and down the other about their lack of attention to detail in keeping this kid infection free, and that they better come up with a hella good plan right then and there or he wasn’t going to discharge her. So in recovery, they were busy measuring her line length, ordering new meds, dealing with the hospital pharmacy, our home delivery pharmacy, and insurance to get a few things put into place. As an almost afterthought, someone ordered a set of blood cultures to be pulled off her BRAND SPANKING NEW NEVER BEEN USED BEFORE line they just put into her chest. I thought it was strange, but didn’t spend too much time dwelling on it as kendall was in and out of consciousness by that point (more in than out luckily) – and was busy pointing at the poor teenage boy next to us who had a woundvac on and was getting lots of IV meds and asking “who dat? what dat sing? why he gets med-sins in hims poke? can i have pink ice cream now? why dat boy just yay-ing dere?”….ugh. dear teenage boy – my extreme apologies. I hope the morphine they were doping you up on made my child’s inquisitiveness disappear into the background.

So i didn’t really think twice about the cultures.

We made plans to start a new overgrowth regimen for kendall’s gut as well as a new “locking” procedure for her line. Basically we inject her with a lethal amount of alcohol, let it set in her line for a few hours, then suck it back out, replacing it with a mass dose of clot busting medication to kill anything that might be left, and then leaving her line alone for a couple hours. Sounds super fun, right? Yes. Yes it is. So that is what was going on around her bedside. I was concerned about the “ball of mucus” on the end of her picc because, hello! – we’ve been running IV antibiotics and antifungals THROUGH that line, so it should most definitely not have had anything on it, especially not anything visible to the naked eye.

So really, it shouldn’t have come as a shock to me when my phone rang at four fifteen am with a message from the on-call doctor that Kendall’s blood culture had turned positive and that we were to make plans to come in to the hospital IMMEDIATELY. Well – sorry, but “immediately” and “4 am” and “terra” will just never make a complete sentence. Ben was already up and on his way to the airport for the trip he had postponed in order to stay home with the girls on surgery day. I fell back asleep/dozed off, and was woken up again by the phone at 6:30. Same doctor, wanting to know where on earth we were. I managed to mumble out the fact that it was butt early, my kid was fine, and if she insisted on getting repeat cultures i could maybe get kendall to our local ER after the older two were on the bus because it was just me at home with four kids. She was placated by that plan, but gave me “fifty/fifty odds” on being able to go home after the bloodwork was drawn. Not even an hour later, our doctor was on the phone telling me he absolutely vetoed that plan and to stop dawdling and get her up to milwaukee NOW. So I made the call I didn’t want to make to Ben, had him get out of the boarding line and come home (he volunteered for this – he didn’t make me make a hard decision!), and started packing. I decided that I needed a little time with my other babies though, so we went and grabbed a quick breakfast together.

And then back up we came.

We had one of the quickest ER experiences I’ve ever had here, and in less than three hours, we were upstairs in a room. Overall, Kendall is looking and acting amazing. We all want to hope that this positive culture is just a contaminant (not a true infection source). The ramifications of it being a true infection are part of what is spurring the sudden and urgent reaction by our doctors.

I rarely get into a lot of the nitty-gritty on here when it comes to Kendall and her situation.  I’m still not sure if i can do that tonite. But know that whatever I do type on here, the whole big picture is easily twice as bad as whatever you think it is. I’m not one of those medical moms who overdramatizes every little thing that Kendall (or any of the other girls for that matter) endures. She goes through a lot – we all go through a lot with her. Every day is filled with pain of some kind. Every day I am assessing issues that would stump many experienced ER doctors. Every day I’m shufflin’. (Ok that last one is a song lyric. but I had to break the ice….)

Anyways – the point being – I don’t know how to say some of the hard stuff. I don’t know if i WANT to know how to say it. If this infection is a real infection, it could have some serious ramifications as to the functioning of Kendall’s immune system, (or rather, the lack thereof), and same issue for her gut. Our doctor looked me in the eye more than a couple times today and said – “her access is becoming critical”. Meaning, we are down to only a few more places we can put a line in, should we need to pull this one. We’ve always tried to protect Kendall’s access, but it’s never been “critical” before. I’ve never seen him actually “worried” for Kendall before. And while I’m not trying to incite a mass panic among all of you, dear family and friends, i’m not sure how worried I should be for her.

She still looks and acts great. Not “normal” or even “baseline” for her – she doens’t feel good, and that is apparent. But she’s not looking “bacteremic” or septic like she was last month. That could be because she is really not that sick because we caught it extremely early. It could be because it is a contaminant on the culture (this is unlikely for a few reasons, but it’s still a theory we are all clinging desperately to). Or it could be because her body doesn’t even have enough immune response to recognize the bacteria/fungus as an invader anymore. (I’m WAY oversimplifying things on that last one, but that’s it in a nutshell). Her bloodwork indicates that her body is at least trying to mount some defense, so that is both a good and a bad thing. Good in that it indicates that there is SOME recognition by her immune system, bad because it makes it even less likely that the bug growing is a contaminant.

But overall tonite – she’s doing ok. And i’ll take Ok.

I’m overly tired. I’m sore from making the round trip to Milwaukee twice (did you know how sore you can get sitting on your butt in a car for so long??? Also did you know how insane you can go when you are sitting in traffic that brings five lanes of traffic on a major freeway down to ONE????). I’m hungry because I didn’t have enough time (or friends!) to plan out bringing snack foods/meals better. I have three items of leftovers which will be left to chill in the windowsill. The omelette leftovers may or may not be a good choice for that – but it’s what we do to survive around here. I guess we’ll see..

The plan for now is that hopefully the cultures we grew today stay negative for 24 hours, and that she remains fever free. If she should spike a temp or if the cultures  grow out as quickly as they did last nite, we would likely start adding in some more antibiotic coverage until we were sure we were covering the right bug. If it stays negative, she doesn’t spike a fever, and she continues to look good, we will do a few more days of antibiotic/antifungal coverage here, and likely be home by the weekend. A positive culture will likely spur on some more action starting tomorrow, including lots of imaging to see if a source of infection can be identified. The thinking is that possibly she has a pocket of bacteria hanging out somewhere that is causing her recent bout of infection cycles. Above all, the major goal is to clear this line and save it, and send us on our way as soon as we are comfortable with the fact that we have killed everything we are possibly able to kill out of her bloodstream.

Ok i’m falling asleep typing this…

I’ll update more in the morning as soon as I know more.

 

terra

Keepin’ On.

It’s been a LONG week. In many ways, I cannot believe it’s only been a WEEK since all this craziness started, and in other ways, i feel like i’ve lost sense of time. And I know for people who are used to staying endless weeks inpatient that that might seem overdramatic, but keep in mind that i lose track of time on a good day, so…there’s the grain of salt! Anyways – I am currently hanging with the girls at a hotel near the hospital. The Ronald McDonald house is IMG_4594perpetually too full for us to get into – in fact i’m not sure they EVER kick anyone out of that one….But I digress.

It was  wonderful to be with them again last nite for the first time since I waved goodbye to them from the ambulance pulling out of Edwards on Monday afternoon. We were able to grab dinner, go swimming, and i got to sleep in a real bed! Granted I got kicked in the kidneys all night by Kaylen – but at least I was on one contiguous surface that was MUCH softer than a vinyl covered wooden box. Today Kendall is in the hospital mostly because she needs her medications still, and they could not be delivered to our house before tomorrow. Also, there was only one doc who thought giving us the boot today was a smart idea, but unfortunately he is the one making the call. Everyone else thinks even leaving tomorrow is kind of pushing it, as do I, but I also don’t think it’s smart to hang around the hospital much longer where she risks picking up some other chaos to add to her mix! So we are pulling some more labs today, possibly doing an ultrasound to make sure the third spacing (fluid retention) and inflammation are going down, and in general just trying to help fine tune things before going home to continue her recovery.

Yesterday if you are on FB, you saw me allude to the craziness of getting little missy’s PICC placed.IMG_4591 It started when we got down to the IR suite, our anesthesiologist had to run to an emergency case, so Kendall and I just chilled on her bed taking crazy pictures and “hiding” from all the nurses behind the curtains. This ended up being a good thing though because it caused the resident to ask us a casual question which led to the attending needing to go review all of Kendall’s previous vein studies to see where he thought he might be able to place a PICC. As I feared, her spots for PICCs are becoming slim pickings. The night before, when she had lost her two peripherals placed in surgery, they paged transport (helicopter team) to come place another one. When they quickly blew through two more in “creative” spots, I knew we were in trouble. After finding one last very tenuous vein (on the inner crook of her elbow – NOT a fun spot to have an IV for an adult who knows how to keep their arm still, and beyond not fun for a kid who doesn’t understand how to not use her right arm!), the nurse looked at me and said we have to come up with a better plan for keeping peripheral access, because she has almost none. Now granted, right now, everything in her body is weak, and we know she’s third-spacing, so we know her veins are just “weak” (meaning they aren’t able to keep a needle in them, or handle the amount of fluid and medicine we need to get through them). But plain and simple, we need to go a LONG LONG LONG time before she needs to use peripheral veins again to give them all a time to heal. Hearing that her peripheral central access was also becoming limited was disheartening.

I’ll try to explain better why this is a bad thing in another post but for now – just know that it was not good news. Anyways – when she came out of surgery for the PICC placement, they took her to the wrong floor, and told me to go a different floor – but eventually (after having to get paged overhead through the whole hospital…so embarrassing) we met in the right recovery room! They were trying to get pain meds into her peripheral, and could not push them in, and the anesthesiologist said it was VERY tricky trying to keep her under because her veinous access was so terrible and he was having to push it slower than she needed…blahhh. I am glad it was THIs particular doctor on because, a. i just love him and his personality, and b. he’s worked with kendall before and knew instantly how to handle her different issues. It was kind of tense for a couple minutes with her needing more meds and no one having orders to use her new PICC line yet (a radiologist has to read the x-ray, report that its in place, tell the surgeon this, and the surgeon has to write orders for use) – but anesthesia decided to just push it in the picc and get orders later. If it wasn’t so chaotic it would have been almost comical. but it was VERY stressful at the moment because i just wanted kendall to feel better. She’s already been through so much, and knowing she was in a ton of pain – so hard to watch.

Anyways – IMG_4577 the PICC is in place, she is getting her actual nutrition again (we could only run dextrose fluids for the last three days because TPN would have killed her PIV’s), got to see her daddy and sissies again, got a good scrubby bath, i got through the HOT MESS of her tangly weave – and in essence – she’s lookin pretty good! I am not real happy with how her labs are looking, even though i understand WHY they still look crappy…it just makes me sad for how bad she must still feel, in spite of her brave game face she always plasters on when her sisters are around!

So we will continue letting her body heal up and recover from this week, and will hopefully be all in our own beds by tomorrow night!

To those who emailed me for the list – sorry – i WILL get back to you very soon! Thank you so much for your willingness to help!

thank you for the prayers and your continual support of our family!

Ok the girls are bugging me to go swimming again…hope you all have a wonderful weekend!

love,

 

Terra, Ben and the 4 Special k’s.

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