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.

Soon…But not yet.

Soon we will be packing up this room and loading into our car and making the long trek home…

But not yet.

Soon we will hopefully have answers for what has plagued our warrior princess for the past week…

But not yet.

Soon i will be able to hug my whole family all at once in our own home….

But not yet.

Soon there will be rest for our weary bodies and souls….

but not yet.

 

Rounds this morning were disheartening to say the least. I should have known based on the labs on the big ipad I run out to look out at every morning….things had done their typical trend in the wrong direction. Way too many red numbers (meaning her numbers were not in the right range). A very cranky Kendall asking for more medicine. A heartrate that beeped steadily higher all night while the breathing alarms went off with shocking regularity. A bag full of bright red urine hanging off the foot of her bed that i could see without even opening up the sleeping curtain. I heard various members of the team whispering outside her door, and knew the news was not “good”. i could pick up a few words here and there, enough to know that we were likely not going home today.

and sure enough on rounds, the attending doctor brought up that he was concerned enough about Kendall’s trends that he did not feel comfortable sending us home. i would take this information from VERY few people in this place. I would argue and stomp my feet and become overly sarcastic and essentially act like a five year old brat to get my way. But from him, his quiet demeanor speaking of a wisdom derived from years of watching kiddos like kendall do unpredictable things – I humbly accepted his proposal to stay at least one more day. But in the staying, to take further action. One thing I hate about “staying one more day” is when nothing is done. when its just “wait and see”. i do not “wait and see” very easily about ANYTHING in life. (I feel like there’s supposed to be some awesome lesson about God teaching me patience inserted here but i’m too impatient to try to figure out what that might be!)
the ONLY shred of sanity i have left about this situation is that at least today there will be ACTION. It still may not give us answers. We may be in no better of a place by tonight than we are right this second, but we will at least have tried. We’ve got to at least try.

Kendall’s body has rarely given us clues to the mysteries contained therein. she has caused much head-scratching and shoulder-shrugging in her almost 6 years on earth. Sometimes we just have to take our best guess and be ok with that as the best possible answer. We have always just tried to make things make as much sense as possible, using the resources we have available, and as long as she’s mostly staying the course, we are ok with that. We are happy with that. Sure there’s lots of stuff that isn’t “perfect”, but we’ve learned to live with it.  It’s part of why she “looks so good” on the outside – we just don’t make a huge deal out of little stuff. We’d be forever in a doctors office or living here in the hospital!

but right now – especially after the harrowing illness she battled the last two weeks – her body is trying to tell us something. and we aren’t really sure what.  She looks exhausted, tired, worn down, and just downright “sick” today.

Maybe it’s one of those times where her body is just more tired than we realize, and she needed some of the supports we’ve pulled away for a little bit longer. Maybe she’s just going to take longer to recover from this fungemia than we thought. Maybe it really IS pancreatitis on top of all of that and it’s just throwing her for a loop beyond any she’s dealt with before.

in any case – she will be getting another in-depth CT scan very soon. We are sending cultures of everything we can culture and will very likely be tanking her up with a blood transfusion to replace the blood she continues to lose from her gut and kidneys. Her need for the pain meds via IV is not being debated anymore so we are able to stay on top of that better to at least keep her comfortable.
I know so many of you have been SO faithful to pray with us and for us throughout this entire crazy journey. Please keep the prayers going over the next few hours – that if there is something to be found that the doctors will see it, will know what it is, will know how we can best treat it. And that if there is nothing to be found, that the team has a sense of peace about what supports she may need added back in to help her finish healing from the fungemia (the yeast infection in her blood that is why we first came to the hospital).
Please pray for the hearts of the other three K’s at home. We were all looking forward to a nice family dinner tonight thanks to some generous friends and gift cards. I know their little hearts endure so much when we are inpatient like this, and it kills me to not be there with them to reassure them that things WILL be ok, we will be home soon….just not yet.

i will update as soon as i know more.

which will hopefully be soon…

but not yet.

 

t

Trust your Intuition.

A lesson I have learned this crazy stay….. to trust my own intuition.

It’s not to say that I usually DON’T – but this stay above others – we acted, her doctors and Ben and I, on our intuition of what we thought Kendall was going to pull next. Fun facts about Kendall: She likes to go into septic shock really super fricking fast. And she will act FINE right up until she is in shock. And even the most seasoned intensivists (intensive care/critical care doctors) up here in the unit have learned to have a healthy respect for their intuition about what complex kiddos are going to do next, and for then throwing all their book knowledge out the window when it comes to kendall.

so this time, our intuition has been what leads us. It was one doctors intuition to call the transport team and tell them to grab the antifungal IV med before we left the ER, even though we had no indication that we would need it. It was another doctors intuition to start a second gram-negative coverage. It was another doctors intuition that led to speeding up the line removal and intubation process so it was in a controlled proactive environment (vs the chaotic reactive situation we got into last year.) And all along it has been my intution to say to those doctors – keep digging, keep fighting for my girl, keep making those choices that seem to make ZERO sense but are what is keeping things in control of the chaos her body is trying to throw. It was all of those things that got us out of the dark scary woods of septic shock and led to a successful extubation and presser wean.

But it has also been my continued momma gut intuition that has led me to keep pushing the team for a better response from kendall. It is hard sometimes to fight “against the team”. Especially a weekend team that knows next to nothing about my child and her penchant for the dramatic. It is hard to get people who don’t know me to understand that when i say “something is just not right with kendall” that i mean serious fricking business. And that the times i CANNOT put my finger on what is wrong are usually the scariest times.  Saturday and Sunday were frustrating for this reason. I just knew she hadn’t made “the flip” yet – this very visible switch in her demeanor that leads to me knowing we are safe to head home – and i wasn’t sure WHY she wasn’t making the flip, only that the placating answers about yeast and tired kids wasn’t cutting it. Something was still wrong. I just knew it. Only, i couldn’t get anyone else to listen.

It’s kind of like what i imagine it would be like to be stuck in a foreign country where you don’t know the language. And you try to explain to someone that you are in pain, you need medicine, but since you don’t speak their language and they don’t speak yours, and you aren’t bleeding out in an obvious way or having respiratory distress, you get patted on the back and head nods and “ok – you be ok!” But things are most definitely NOT OK and you just need someone to HELP YOU. That is how it was all weekend here. It was making me VERY agitated and frustrated and not a nice person at all.  (comments from the peanut gallery of the friends who took the brunt of my frustration this weekend will be stricken from the record!) But – I just knew….I didn’t know WHAT but I knew SOMETHING. And that was enough. 
So Monday morning rolls around and i am woken up to our nurse telling me we are headed down to surgery RIGHT NOW because they had an opening to get her temporary PICC line placed and replace her GJ tube which tends to harbor nasty yeast on it on a good day, and since we were trying to kind of eradicate as much yeast as possible and her tube was due to be changed last month anyways, we went ahead and did that. And again – thanks to the quick thinking intuition of her doctor, a dose of meropenum (one of kendall’s most favorite gram-negative coverage antibiotics) was ordered to be run during the procedures.
As a quick aside – let me explain here why we have to do all this line placement juggling since I get asked a lot of questions about it: Kendall survives day to day via nutrition that is run into her veins, called TPN (total parenteral nutrition). This is run into a large plastic “permanent” IV that is in her chest and tunnels down through her muscles and ribs directly into her heart. You may have seen this in real life or in pictures – its the white tubing that is sometimes visible on her upper chest. This is threaded into the backpack she wears all the time with her IV pump and the bag of TPN fluid in it. When you get a life threatening septic infection, it is usually advisable to remove that line as it is more than likely seeded with a bunch of little buggers that like to hang out on plastic things in warm places, like the heart. BUT – you can’t just put a new one back in until you are sure you have won the war against the bugs. So you send them to the OR to find a temporary central line because if you’re kendall by that time you are surviving only because of the insane amount of medications running on a million pumps into 1400 different IV lines that cannot be turned off for even a few seconds. THIS IS HOW WE HAVE FUN AROUND HERE FOLKS!!!! (that is tongue in cheek for those who aren’t blessed to have experienced my sarcasm in real life…) SO ANYWAYS – because kendall likes to survive solely on the IV meds flushing into her body, we need a lot of “access”, which is the fancy way of saying we need a crapton of IV’s.  so she gets, usually, a Femoral Line placed. If you think Femoral sounds familiar, you might be thinking of your FEMUR which is your thigh bone. So yes – that is where Kendall gets a triple lumen IV placed that threads up her femoral artery directly into her heart. And it’s ok if that thought skeeves you out because it most certainly skeeves me out.

The bad news here is that even after we’ve started to win the fight against the bugs, it is advantageous to wait as long as possible before placing another broviac (white chest IV). Since life would be decidedly and insanely difficult with a triple lumen IV in the crook of her leg, we have to decide what to do for “temporary central access”. OR – we have to beg infectious diseases, critical care and surgery teams to all play paper rock scissors and decide how soon we can put a new broviac in. Because she grew two crazy yeasts this time, no one wanted to play that game, so we decided to go with a PICC – which is a peripherally inserted central catheter. Basically its an IV that is placed in your arm that threads into your veins but doesn’t quite go all the way to your heart. My TRUE description of them is not fit for family viewing so i’ll keep it to myself – but suffice to say – we have a hate/hate relationship with them at our house.  I could not tell you if its just that kendalls peripheral veins are so crappy that they will never play nice with a picc, or if its just her body’s crazy schizophrenic clotting factors (“oh let’s make clots! NO!!! Let’s not clot at all – EVERRRRR!!! NO! CLOT CLOT CLOT!!! *gurgle gurgle gurgle* fine i’m just gonna bleed out slowlllllyyyyyy!”), or if its just that Kendall’s body likes to be obtuse – but we do not have good luck with them.

I am optimistic that we can get this thing to stay functional for the three to four weeks it needs to be. The longest we have ever had one picc stay working is 12 days. Here’s why that isn’t gonna work for me. So one lumen of Kendall’s picc will be dedicated to her TPN, which runs 24 hours a day, 7 days a week. The other lumen would, like with her broviac, be used to run her intermittent meds like zofran, benadryl, and then now the micafungin (antifungal meds that kills the yeast in her blood). So – ok, kind of a crunch but do-able. Micafungin cannot be run in the same lumen as TPN because of all sorts of dumb crap that i didn’t pay attention to in chemistry class.

AND THEN……Kendall decided to start getting sick again, and now it looks like she has a bacterial infection PLUS the fungemia so her medications will be running pretty much damn near ALL THE EFFING TIME into the other lumen. Usually what happens is that the smaller lumen gets a clot formed on the end of it (and no i don’t mean fibrin sheaths i mean literal thrombi), so we can’t use that. But everything won’t fit in with the TPN because 3 of the possible 6-7 meds we are looking at coming home on for the next few weeks are incompatible with the TPN. For those of you who blessedly have NO clue what i’m talking about you are so confused and that’s ok. For those of you who DO know i hope you are rocking in the corner with me at the thought of this monumental task ahead of us.

Bottom line: this picc MUST STAY WORKING. I think we are going to shoot for three weeks out – it will be IVIG time again and we can just bring her in for a quick stay and tune up and switch out the picc for a new broviac and go about our merry way. Sounds great, right???? YES. Let’s all vote for this plan!

Anyways – Monday after we got that picc line in, and hooked up to run her fluids into it, she started screaming in pain. And pretty much has only stopped for a few hours since then. They are telling me that they “probably just dislocated her shoulder a little bit” when they had to adjust her arm to thread the picc line around the curve of her arm down towards her heart. Because that is supposed to make us all feel better. Oh sure! just a little case of nursemaid shoulder! shake it off kid! But the other and more concerning thing is that starting monday afternoon, AFTER we pulled out that femoral line that bled like a stuck pig for thirty minutes and her poor nurse had to sit ON kendall’s bed with her hand squeezing that artery shut that whole time to get things to start to clot up, kendall started acting very very “off” again. By Tuesday morning it was evident that we were missing something major, and in the middle of it all was poor Kendall who just is absolutely worn out. I’ve never been septic myself, nor have i ever gone into shock from it – but they tell me it’s kind of like how crappy you feel when you have influenza, times ten.  Based on how crappy Kendall appears to feel, I do not doubt that for one second. I know she fights so hard to stay “happy”, or acting normal, in spite of how sick she may feel. So when I see my baby with absolutely no spunk left in her, and to be just beyond DONE with all of this….it makes me feel horrible. I knew something was wrong but we had no real information to go on as to WHAT it was.
We ended up adding back in antibacterial coverage  yesterday afternoon after we pulled new cultures off her new picc line – but really, it’s just our best guess. We don’t really know what else we are fighting here, only that we haven’t won the battle yet. After receiving her first dose of the gram-neg coverage meds was the first and reallly ONLY time I saw some of “kendall” come back, for a few brief moments.
After having an extremely rough night last night battling what we can only presume is pain, we were finally able to give her some relief using morphine. It is a horrible last resort – but one that luckily brought much needed rest to her poor little body. On rounds today we discussed that we have GOT to stay ahead of this pain – but there really are no good ideas right now about where the pain is coming from, or even if the pain is related to a possible location of infection. In short – we are still here kind of chasing the tail of a very sick Kendall who is fighting back with all her might.

It is sad to me to see her not wanting to play with her playdoh or try to paint something – things I would expect her to want to do by this point, if even for only a few minutes. She is gripping her new Frozen MagicClip dolls very tightly throughout most of the day, so that is some comfort I take in that she still has an interest in playing – just still doesn’t feel up to it.

I keep hoping that maybe after the next dose of  medicine or maybe after the next fluid bolus she’ll be “better”. She’ll have made “the flip”. I keep hoping, watching for it, praying for it. But so far, not yet. I’d normally be chomping at the bit by this time to discuss plans for home….even her doctor commented on it today that he knows something must still be up because i hadn’t brought up discharge yet. I told him that was because i only talk about discharge once I know I’m taking home a Kendall i’m capable of caring for at home. And we are most definitely not even close to that yet. But maybe tomorrow we will be closer.

IMG_7106 Maybe tomorrow this girl will make more of an appearance. This picture stopped me dead in my tracks when i saw it on my phone. I don’t remember taking it really, other than i’m sure she wanted me to do it sometime when we were waiting for sissies. She was probably all up in my grill about something and i was probably frustrated at her for that. And now i’d give just about anything to go back to this day – warm, happy, with a smiley girl who was full of her usual silliness. I know we’ll be back there soon….but she will be changed by this stay. She is in pain and I cannot fix it and i can’t make it go away and i can’t make her magically better.

But oh this smile….and her immense capacity for love. I cannot wait to have those back. I know they are waiting just around the riverbend. (Yes that’s from Pocahontas. i’m still trying to convince her to watch it with me. She’s got a few other things on her mind right now but i think i can probably make it happen before we leave for home!)

I’m just rambling now. I’ll wrap this up. I backdated a couple posts – one is an update on KQ i wrote less than 24 hours before she crashed.
Here’s to praying that we have more information tomorrow, and that maybe more smiles make their way onto her face tomorrow too. Thank you for being here, being part of this crazy journey with us.

Love~

me.

Recovery.

In case you had not seen the pictures on my or Kendall’s facebook pages – she has been extubated! Considering that I was not even in the mindset that she would need intubation this time, the weight that has been lifted by her breathing on her own and off of the presser support (no longer in septic shock) is huge. We as her family are SO very thankful for all of the prayers on our behalf and for the mercy of a loving God who has seen fit to allow us more time with our warrior princess.

This path of Kendall’s – the constant up/down swing of the pendulum of “health” – it is hard to explain unless you have lived it yourself. I have received many questions from some amazing new supporters (Kendall Krew we like to call you!) regarding why this or what does that mean and how does this affect that….it is hard to jump into the middle. And even for some of you who have been on this crazy ride with us since day one it is hard to keep up.

I titled today’s post recovery because it seems fitting. She is recovering from a horrific illness, but she is not “better”. She is recovering from the effects of the fungemic septic shock, which are many, but she is not back to 100%. And truthfully, she may not be for a long time. I am sitting here right now listening to the beep beep beep of her heartrate as it is monitored via the electrodes all over her body, and it is soooooo sloooooowwww.  Her heart is very tired. Even though she was ready for extubation and it was the right call – her body is still struggling to maintain enough energy for all of the demands on it. She is the compensation queen though – struggling here to compensate there and doing her best to just keep everything between the navigational beacons. None of her doctors really have a good explanation for me about this – it’s just one of those conversations that’s hard to have because the answers either aren’t there, or they aren’t easy to explain. Even though there is a very commonly held belief that Kendall’s main underlying diagnosis is mitochondrial disease, and because of that we know that her body does not make or sustain enough energy to operate all body systems efficiently – we do not have much more evidence past that. Because at the end of the day it really wouldn’t change anything. We cannot MAKE kendall’s gut work any more effectively than it does right now (which is really near nothing!) and we cannot MAKE her immune system function more properly.

I don’t really talk about Kendall having mito a whole lot – or at least – I don’t blame her day to day issues on mito. I accept that it is likely the reason we see what we see, but I spend much more time focusing on how to help her have the best day, week, month possible. I do not think in terms of years really. That is too much information to digest. most of the time I think in terms of chunks of hours. how can i make sure she is comfortable at school? how can i make sure she does well at therapy? if we want to go somewhere as a family on saturday that will tax her body, how can i start boosting it up on thursday to be able to handle that energy demand? Dwelling on the progressive nature of something like mito – it is overwhelming. It is too much. I don’t need to be reminded of the facts about this disease because we live it every day.
one of her doctors, the one who perhaps shoots straightest with me during these really rough times, told me the other day that kendall has had progression of her underlying disease, and that that is why her body went quicker into shock this time, and handled it much less efficiently in spite of the relatively good run of healthy months we have had. It wasn’t stated in any other way than just simple observed fact. But it was hard to swallow that. Because I know there is some truth to his words.

So we press on.

Kendall is doing well enough to talk about our plans toward home. Like I said – she is not “better” – but she will be out of the woods of needing life support, so we can handle things at home. If you have not ever taken a chronically ill child home from the hospital before – let me enlighten you a bit.
It is good, this going home. It means you are out of scary woods. you are still wandering around the edges of the woods – but you kind of know where you’re at. You will leave the “comfort” of the machines that beep out the vitals, the pharmacy down the hall with any and every med your child might need right there at your nurses fingertips,  the teams of doctors who make hard decisions so you don’t have to carry the weight of everything on your own shoulders, and you leave the amazing nurses who are at your child’s bedside 24/7 doing the overwhelming amount of medical care they need and dealing with the beeping pumps and the timing of meds round the clock.  These things will now rest solely on your shoulders.  If you are lucky, you have a nurse or two that can help once you get home, but they are not hospital nurses and they need to be updated on all the new conditions/symptoms/meds. This is not a quick five minute conversation. It wears you out to have to transfer information from doctors and nurses who work at a much faster pace than you to the nurses who work in the slower nicer pace of your home. But sometimes you don’t even have the nurses at home because they have all had to find other jobs while your child has been in the hospital. So you go home to do all the unpacking of medical supplies, and inventory the things that need to be ordered in your absence. You set up the chart of meds that will hang in multiple places around your house so you don’t forget an important medication in the flow of regular medications. You set the alarms on your phone as a second reminder, including the brutally painful 2am and 4 am ones. And unlike the hospital where everything has it’s own pump and requires only a quick change of syringe and pressing run – you have to set up new med lines and reprogram pumps and find a place for them to go because your home IV pole doesn’t have enough places for extra pumps.
You will now be the one sitting bedside watching the numbers on the monitor and hoping your home equipment isn’t lying to you about numbers and have to make your own decisions about what is “ok” and what might mean that things still aren’t hunky-dory and you will have to weigh in your mind if this is ok to leave overnight or do you need to wake up the other three kids and take them to someone’s house at 2 am so you can take the sick one back to the ER and await transport again to the hospital three hours away? you have to juggle all of the balls of this decision and play a really fun game called “risk/benefit ratio”. Is the risk of ignoring this greater than the benefit of addressing it and dealing with all of the other logistics required to address it?
You will be in your own house – able to do your laundry without being worried that someone else will steal something or will stop your load mid-cycle and set your wet clothes in a random place in the family waiting room. You will be able to sleep in your own bed that isn’t made up of vinyl covered boxes, but you will still need to give so much medical attention that you will hardly get to see it. You will get to shower in your own glorious shower with a shower head that sprays from above your head and with enough pressure to actually wash your body vs the elbow height dribbling of the family room shower. But this shower will need to be timed well between meds on the chart and alarms on your phone.
You will be home, with a child who has survived another life-threatening septic episode, and you will be grateful. So very grateful. You will perhaps grumble a litle to yourself under your breath as you are picking up the 38 milion polly pockets she had left laying around the day before she got sick, but you will catch yourself because you realize that soon enough she will be making that mess again and for that you are SO thankful.  You will try not to think about “next time”, and you will try not to think about what this time has taken out of her. you will focus on the here and now and getting through the next couple hours.  That is all you can do. So you do it as well as you can. Knowing all too well that “next time” will likely hit you out of the blue on a random sunny tuesday morning and you will start the cycle all over again.

This is what it is like this week.
You will see the pictures of Kendall tucked into the car. You will rejoice with us that she is making it HOME. home being such a beautiful word.
And you will rest easy that she has made it. She has survived.

I will be doing the same.
But please don’t stop the prayers then. I will need them more than ever once we get home. I will be going home this week (we hope!) with less than ideal central access for Kendall (we have to place a picc which rarely works for more than a week or so), with no nursing, and no husband (he left for his business trip today after postponing it last week). I have done it before and I will do it again – but I cannot do it alone. I can do ANYTHING and EVERYTHING through the supernatural strength that can only come from God taking pity on my soul and boosting my spirit when I need it the most. 
So this is how recovery will be. We will do our best to get miss kendall all tanked back up, get her legs working again, get her strong enough to go back to school if we ever get a nurse staffed at our house/school.
She will recover, and we will go back to living life. For this – we cannot thank you enough for your prayers and love and support.

We will keep on keepin on, because that’s how we roll around here.

terra.

Peace.

Have you ever had one of those times that didn’t SEEM like it was as hard as it was until after you were through it? And then in the absence of the hardness you realize that it was actually really fricking hard and it sucked?

That is me today, regarding yesterday.

Having to have a conversation with Kendall’s doctor about how we felt like she was looking, and admitting that she was not doing as well as we had hoped, that was hard. It was hard to know she was REALLY sick and was REALLY in pain/discomfort and there was absolutely NOTHING we could do to make it better. It was hard to not know what was making her so sick and if we were doing the right thing to try to help her. It was hard to have the intubation team gathered outside of Kendall’s room waiting for her to hopefully not crash while we tried to beg the OR (Operating Room) schedulers to clear a room for Kendall NOW. It was hard to be functional on absolutely zero sleep from spending the night at her bedside helping her deal with the nonstop vomiting and shaking from the fevers.

It was just really really hard.

It was still hard even after the decisions had been made. Even after the OR team came to take her down to surgery, and the consents had been signed and the carefully crafted plan written out and gone over with each team member….It was hard to leave her at the door of the OR suite and lean down and kiss her goodbye. It was hard to know that she would not be awake when she came back to us. It was hard to think about the battle that lay before her and the surgeon with her body in such a sick compromised state. It was hard to not think about “the last time” we had signed her over for this surgery, and the utter chaos that ensued after it had happened.

It was hard when she came back to the room last night, and there were teams of people on either side of her bed and at the foot and head of her bed, all working in a carefully choreographed dance of tubes, wires, pumps, medicines to hook her up to the ventilator, to the room monitors, to the meds that are keeping her heart pumping and her veins strong and the fluid in the right place and fighting the bugs. It was really really hard to be in here. I clutched the back of the chair until I heard the team lead call out the orders indicating that she was fully switched over to the PICU and no longer the OR team’s and then i ran from the room. I hate that i do not have the strength to stay in there and watch her at those times. But the emotions were threatening to overwhelm me and I try to never ever ever cry in her room, I keep it as a place of peace and happiness as much as possible. I ran down that hallway and i found the secluded bathroom and i shut the door and i slid down the wall and i felt the cool tile and i tried to just breathe…breathe. In and out. focus.

And when I had gathered up enough strength to come back, I walked back down the hall to where the controlled chaos was still going on and I stood just outside of her room, watching these amazing people who know exactly what each line is for and where it goes and how to order meds in just the right doses to keep a very crazy and unpredictable kid in a happy place. And one of the other nurses comes up behind me and grabs my hand and puts into it a pile of candy. She told me it was from another mom down the hall, another very strong momma who i am blessed to know, whose daughter is also here battling some nasty bugs with a body that is broken more often than not. And then that nurse pulled me into a hug, and whispered into my ear that kendall was gonna be ok. And that miss M (the other warrior princess) was gonna be ok, and that our girls were fighters. And I just leaned into her arms and let her hold me up for a minute.

These are glimpses into what life is like up here in the alternative universe known as the PICU. Food and candy and hugs – these are all we have to show our thanks as the parents of the babies who these amazing people work so hard every day to save. Our nurse the last couple days – she sat on the trashcan at Kendall’s bedside for almost three straight hours yesterday. Knowing in the way that only the best seasoned nurses know things that something was desperately wrong with Kendall – and working in the way that is unique to her to let anyone and everyone know that it was NOT ok to keep letting kendall suffer. The doctor who she complained to the loudest is the one who has saved kendall’s life a couple of times, and knows enough to know that something WAS going very wrong with kendall but she wasn’t making it clear to us exactly what that was. He sat in the hallway with us and had an agonizing conversation with us about having to intubate her. Earlier that morning we had a parade of nurses popping their heads in as they got off shift just to say hi and tell kendall to be strong. It is so hard to explain to you how this is just our family here.  I am strong here when i need to be only because the burden of Kendall’s care no longer rests squarely on my shoulders. I have so many amazing smart people who come alongside me and help lift that burden and they do it so very well….
there is not enough good things I can say about them all. Every single one.
they know when to come make you laugh and they know when to put their arm around you and ask if you’re doing as ok as you’re trying to act like you’re doing.

this is disjointed and probably makes very little sense. I am tired. I am emotional.
But i am thankful.

today has been calm, and that is the best possible scenario. Kendall’s body is still fighting a very good fight. She is initiating breaths over the vent and the vent settings are not very high. These are good signs. But she is still battling fevers between 102 and 104 degrees, and with every spike her body destabilizes a little bit. Because of her amazing nurse today we have been able to get back on top of these momentary losses, but she is still fighting a very tough battle.
tonight we hope she makes more baby steps in the right direction. we pray that God continues to hold her through this journey.

i have so much more i want to say but i’m kind of out of words right now.

t.

life is like a river.

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

This is where we are at this morning.

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

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

These times are rough.

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

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

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

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

And fight she is.

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

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

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

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

I do know that she is very sick.

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

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

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

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

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

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

 

keep on keepin on~

terra.

Starlight STarbright

I am truly SO very pleased to present today’s blog post to you!

As many of you know, Kendall is frequently hospitalized, and has been since she was born. Many of the hospitals that serve children are part of the Starlight Children’s Foundation, through which they receive support for their child-life programs and family based support programs. I am SO happy to report that recently, Children’s Hospital of Wisconsin became a Starlight hospital too! While we are able to be part of Starlight events locally in Chicago where we live, there wasn’t  a way to stay in touch with our Starlight friends at the hospital! And now it’s all one big happy family!

If you think it’s a little weird that I am  THIS excited about this – let me tell you a little about Starlight in their own words:

wisconsinchildrens

Over the past 30 years, Starlight Children’s Foundation® has become a leading global charity that partners with experts to improve the life and health of kids and families around the world. Collaborating with experts in pediatric healthcare, entertainment and technology, Starlight provides a unique blend of family-centered programs and services from hospital to home. Starlight partners with more than 1,750 healthcare facilities and every major pediatric hospital in Australia, Canada, Israel, New Zealand, the United Kingdom and the United States, serving millions of children every year.

STARLIGHT programs –

Starbright World® – The first-ever online social network for teens with chronic and life-threatening medical conditions, and their siblings. Members are able to connect globally with others experiencing similar medical journeys.

Starlight Fun Center® – Mobile entertainment units containing the latest gaming system that roll bedside in hospitals to provide distractive entertainment and therapeutic play for pediatric patients.

Starlight Tablets – A critical resource for healthcare professionals to support the ongoing needs of kids while in the hospital.

 

Basically, Starlight is able to help the hospitals provide things for all the kids treated in their facilties. As part of this Christmas season, they have been having a #12DaysofGiving campaign, designed to show everyone that THEY can make a difference with a small gift. I am honored to be able to highlight the Children’s Hospital of Wisconsin Wish List – because it means a whole lot to me personally. I literally think I had a few tears in my eyes when I saw “PlayDoh” on their wish list. I know that my precious little playdoh addict had a LARGE role in the reason why there is probably a critical shortage of Playdoh on every floor in that whole huge place. If you could see the difference in Kendall, that sparkle that hits her eyes when her child life worker, or a volunteer, or one of the doctors she has conned into going on a special mission walks in with that yellow can and a couple medical tools to be used as playdoh toys – you would know that these things on this list, they can be just as important to a child’s recovery as the life-saving medicine being given to them in the hospital. It’s a piece of normalcy, a piece of home.
Playdoh is just one small example of the kind of stuff on the CHW Starlight Wishlist.  There’s a need for books, card games, movies, cars – so many things that are so simple and inexpensive.

clip_image002

For my girls this Christmas, we have talked about giving back, and not focusing on what we receive. One of the things we talked about was being able to give back to the hospital that has given us so much this year. We will be making a few purchases off of this list in honor of Kendall Quinn and in celebration of the fact that she will continue to decimate the playdoh population at the hospital in the years ahead BECAUSE of how amazing the people of Children’s Hospital of Wisconsin are.  It is not nearly a good enough way to say Thank You – but it is a start.

I encourage you to look through this list, see how easy it is to make a donation, and consider replacing one of the toys you would be buying for your children by purchasing a toy off of this list in their name. Talk about it with them. Help them understand how very much it means to any child in the hospital to get a new book, or have a new toy to play with. Spread love and joy beyond your own tree this Christmas morning. I know it’s a hard thing to capture and do – and this is SUCH an easy way to start!

And then come back here and let us know how you’ve helped out our home away from home! I’d love to hear if you are able to be a part of the #12DaysofGiving for Starlight!

Thanks for taking the time to read this and to head on over to check out the wishlist! I really appreciate it!

 

Have a beautiful day my friends!

 

Terra.

Part of your world.

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

love you with all of my heart.

 

T.

Life in the picu.

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

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

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

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

 

Have a beautiful day and keep on keepin on!

Terra

 

 

Thank you.

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

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

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

kq2

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

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

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

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

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

kq1

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

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

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

kq4

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

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

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

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

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

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

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

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

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

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

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

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

Saving the most emotional for last – dear Rachel.

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

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

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

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

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

 

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

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

kq3

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

 

forever gratefully yours,

terra.

the crazy mom in W508.

Related Posts Plugin for WordPress, Blogger...