Cheers.

Not the drink kind.

Well, kind of the drink kind. Except I currently don’t have a drink in my hand.

I mean the kind where it’s a bar where everybody knows your name. except it’s not a bar, its the hospital.Cheers1

That’s kind of how it felt yesterday when I wheeled Kendall into our unit and there were nurses waiting in a line down the hallway saying “welcome back!!!” and escorting us right back to the same room we had just left about 24 hours before.  But kind of like the song says “you wanna be where people know your troubles are all the same, you wanna go where everybody knows your name.”

I know there are some of you who are understandably confused about what it all means that we had to come rushing back up here yesterday after we were supposedly ok to go home. (Don’t worry, i’m mostly still confused about it all myself!)

Basically, when we were leaving on Saturday afternoon, we knew that one of her cultures was growing positive, but it was a pretty late positive, so they let us go anyways because a.) I was already packed up and none of the weekend people wanted to come tell me i had to unpack, and b.) the assumption was that we were starting to get on top of the bug so continuing with our meds at home would still be an appropriate course of action. Well Sunday morning another one of her cultures popped positive, and one of her main doctors was actually around to see this news. Infectious Diseases was consulted and the decision was made that we needed to get her old line out as quickly as possible as the belief is that these bugs have now invaded and set up shop on the line itself and that could set her up for a REALLY bad infection if they hung out there waiting til the antibiotics were done. I don’t fully understand all of the reasoning, and i know there was a lot that went into the decision, but the bottom line – we had to get the line out.
So i packed up the laundry I had just done, put the unpacked bags back in the car, and drove back up here. Except I forgot my awesome mattress pad that makes the boxes of bliss semi-bearable so….that kind of sucked!

In a normal course of action – the old line would be pulled and a temporary PICC line would be placed.  A PICC is a peripherally inserted central catheter – basically it threads through the arm and into one of the main heart veins. It is a good temporary solution between permanent lines – for a lot of kids and adults. Unfortunately for Kendall, her arm veins are mostly scarred over and get VERY unhappy with any use – especially a double lumen PICC. They usually cause more problems (clots, occluded lumens, just a general pain in the booty) than they solve, but they are sometimes a necessary evil.   complicating the matter is that most PICC’s are made of polyurethane, and you cannot clean the area or dwell alcohol in polyurethane because it starts to melt it. Kendall can only use betadine/alcohol to clean her sites, and she relies heavily on an ethanol (alcohol) dwell to help keep her line clear of the bugs – ESPECIALLY when we cannot get clear cultures, like right now.  So all of this led to our surgeon needing to think way outside the box about the kind of line he could place, where he could place it, and how we could still get the access we need.
This of course is all based on which of Kendall’s veins are still open/usable (the more veins are used, the more they tend to scar over and become unusable. At one time Kendall only had two veins open for central access, but miraculously a couple years ago a line study showed that two other sites previously thought scarred were actually slightly open.) ( I realized there was one other question on Kendall’s page I meant to answer too: Can Kendall have a port? And the answer is really no. Ports are great for people who only need occasional access and who have actual immune systems. Neither of those applies to Kendall. The placement and removal of a port is a much more involved process than with a broviac which is the type of line she has now, and while we initially tried a port for her line needs, it quickly proved to be a very poor choice for her. So that’s why we can’t do a port!)

Anyways – all of that led to what we have now – a broviac line that is only a single lumen that is non-tunneled but goes centrally to her heart, and a midline IV in her forearm that should hold a little more steady than a typical PIV but not tick her BC vein off too badly. This is not an ideal situation – because we cannot leave the hospital with either of these lines in place. And neither the ID team nor the surgery team will place another central line in her until we have five negative cultures (which translates to ten days in Kendall dollars). I did hear one person say 5 days of negative cultures, which is a different story though – so i’m hoping everyone means THAT instead of five negative cultures because the thought of being here for ten straight days makes me want to eat all of the donuts in the world and cry the ugly cry. It is different to be here with a pretty stable Kendall vs a very sick one – of course when she’s very sick it’s not a question this is where we need to be. But right now we are in a gray area. She is still definitely not quite herself, and her care at home is VERY demanding. Yet – she isn’t SO sick that all she wants to do is lay in her bed. Therein lies the challenge. Entertaining a child who WANTS to be up and doing something, but doesn’t have the energy to do so, and still requires being hooked up to multiple machines and monitors making doing much pretty impossible. Please know that I am not complaining that she is doing so well~ I am SO thankful that she is handling this illness pretty well from an infection standpoint. I just feel….”stuck”. I almost always have a good instinct about whether it’s time to go home or time to stay here inpatient, or what direction we need to look in or head in….and I don’t have that this time. I don’t like this feeling but I know in part it is just God telling me to slow down and trust HIS timing and His plan.  And I am reminded, somehow, sitting here in this small room with the constant beeping of monitors and the discomfort of this vinyl coated boxy couch bed, and the chill of the conditioned air being pumped in – of sitting on a warm beach, watching the waves crash onto the shore. There is no sense of timing to them. They come and they go and they just are. And I am trying to be like that – knowing the waves come and they go and they just are and all I can do is keep my eye on the One who knows that even in chaos there is order and even in discomfort there is joy.

So today we will wait some more. For a plan and for clear cultures and for sleep and for whatever this day holds.

I’ll update again once I know more!

Keep on Keepin On~

Terra

Things you Learn.

I don’t know why I decided today was the day I was going to share this. But I just wanted to.

Maybe because these times with Kendall in the ICU are some of the “dark times” i reference in the vlog I’m inserting below. Or maybe just because i’m sleep deprived and there is no rhyme or reason to anything i’m doing right now.

Anyways –

as a quick Kendall update (and if you want more up to the minute ones – be sure you have “liked” her page on facebook – there’s a link over to the right in the sidebar if you’re on a computer and on your mobile, scroll down below this post –

She is not septic – and that’s a very good thing! That’s what usually makes her go tumbling downhill head over heels and end up intubated and on all the pressers, etc.  She does have bugs growing out of the blood we take from her central line – but not out of her peripheral veins – so that means she is not even bacteremic (blood infection) – which is what the suspicion was yesterday. And to look at her – she is definitely holding her own.  But even with all this “good” news, and a pretty happy Kendall, it still just wasn’t adding up to me.  Something wasn’t quite right.  Out of that weird sense moms have, I asked them to please run a urine culture. I was met with resistance and all kinds of reasons we didn’t need to do that – but I asked if they would please just do it to shut me up.

And whaddya know??? She sure enough has a nasty UTI as well. And THAT makes much more sense to how she is acting and how/why she got so sick so fast. So now we are working on chasing that information and getting the right antibiotics for that bug also. Overall she still remains in good spirits and is not currently trying to pull any scary stuff.  I am VERY grateful for that. 
I am grateful for a lot of things – some of them are harder to put into words than others.  I am grateful for the love and support from so many friends and family who lift me and my family up during these times when our lives are thrown upside down.  I am grateful for the relaxation and peace of my trip last week and that Kendall waited until after I was home to pull this craziness! I am grateful for every breath of life I am blessed to live and I am grateful for the hard lessons I have learned this past year.

So …

there’s that.  I realize it probably doesn’t make sense, and honestly i  haven’t re-watched it since i made it so it probably REALLY doesn’t make sense.

But that’s what was on my mind today. There might be more later. You never know. So check back often.

And if you want me to talk more about the swimming in the bat cave experience, let me know!

Peace out party people. I’ll try to have a more make sense blog post later.

Terra.

turning the page.

Today we turn the page on a new month, turn the page on a new season even.

i hate being “in” over the page turn. It’s just a weird mental thing. Like not stepping on sidewalk cracks or having to wear certain shirts inside out on purpose. It causes a glitch in the matrix.
But we really didn’t have much choice in the matter so i’m trying to accept it for what it is and move forward without focusing too much on the calendar or the changing leaves outside the window.

i really just wanted to get some kind of post up on this actual calendar day.

I know there are so many questions some of you have about the information we have gotten from various tests/studies we’ve been doing on kendall trying to come up with a good plan of attack for getting her home. As i am exhausted at the moment, i hope this makes a modicum of sense.

Basically, we fought back the fungemia, her initial presenting issue – pretty well. Pulling the line and supporting her body through the septic shock by being proactive based on her past history – that was almost the easiest part of this stay. And just when we thought we had things all set for discharge – BAM….down went kendall again. Acting very sick, being in a  ton of pain, and essentially not giving anyone real warm fuzzies.
There’s so much i could write about – but the bottom line is this: her pain was out of this world insane for her, and she was requiring high doses frequently of narcotic pain meds, and because of, or maybe secondary to the pain, she was spiking fevers. EVery time she gets back over 102F, we have to re-send blood cultures to make sure we aren’t missing another infection.

So far those cultures have been negative, so we were really stumped as to what could cause her to look/act so septic and yet, apparently, be ok. She points to the pain as being located under or behind her ribs on her left side, and sometimes it radiates up that shoulder and sometimes its her right shoulder and sometimes it just hurts so bad she won’t take deep breaths and she gets in this hyperventilating breathing pattern. We have checked her pancreas and gall bladder – and while both are inflamed and angry and the gallbladder is full of sludge – the team doesn’t feel those are the problem. We know her spleen is three times its normal size and is not shrinking back down like it should be (it is stretched to capacity – and they do admit that could be pretty painful). We have ruled out kidney stones, established that she may have supermesenteric artery syndrome but that her renal pressures are ok for now, and essentially racked our collective brains for ANY other possible scenario under which we could be operating here. So far nothing new is popping out to anyone.

It is frustrating and heartbreaking and yet….I am glad we are looking. I am glad they are not giving up on trying to find answers for KQ. She is an enigmatic mystery for sure. And this pain – it is not my baby. It is new and whatever it is that is plaguing her it takes her WAY down when the meds have worn off and she is left only in this place of writhing, blinding pain.

We switched her antibiotics yesterday back to her old crazy plan where the nurses are scrambling, even with all the pumps and extra help, to fit everything in during their 12 hour shifts. And with that crazy schedule, her fever has not returned. Curiouser and curiouser. We have absolutely no idea what monster we are fighting.

This is …… it is one of the hardest battles I have helped my baby endure through. I am weary from this one, and I know her little body is so so so tired.

We don’t really have more of a plan right now. But this is what I know. I am exhausted so I will post this for tonight and hope that tomorrow brings renewed strength for the fight.

 

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.

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.

Head to toe.

In an attempt to catch up on what went wrong last week and why we are still trying to correct some of that, I’m going to do a head to toe assessment of what some of Kendall’s issues were and still are. Some of you may not understand this at all, and some of you will understand more than even what i am trying to put here. Forgive any mistakes/inconsistencies – I am sure they come out of my exhaustion and inability to understand some of what was going on last week when it was changing minute by minute. This may end up turning into a multiple part detailed description of what went on, and it may end up just being more of a “bullet point” list of things I need to remember for future reference.

This will be Part 1.

It started last Sunday morning when we went to get Kendall out of bed and noticed her TPN pump had malfunctioned overnight. It had not pumped more than maybe 50ccs (not even 2 ounces) into her overnight, but had not alarmed at us to let us know something wasn’t flowing through. Now normally this would be an issue, but nothing we couldn’t work on her from at home with extra fluids and glucose gel, things like that. However, this was simply compounding the issue of her already being slightly on the dry side from a day of walking around at a festival the day before and being dried out from that.  I set her down out of her bed and she instantly was wobbly and clumsy and complaining of leg pain, but it wasn’t anything that didn’t make sense due to the pump issues/lack of fluids.

By the time we got downstairs, she was whimpering in pain, and within an hour her pain was pretty bad. I called our nurse and we talked through a few things to try, but neither of us thought it was much more than dehydration/blood sugar issues. Very shortly after trying our intervention plans, though, Kendall’s fever had elevated to 102, and a few minutes after that, she was at almost 105. At that point I started packing things up to head up North – still thinking it was just dehydration and she would likely cool down in the car on the way up (which is essentially what she did last time we went through this, maybe three weeks ago).

Things were ok right up until about Ohare (an hour-ish into the trip), when she started this crying that i’ve never really heard her do before, but it definitely seemed pain related. I was getting more and more worried as the miles ticked by, and when we pulled into the CHW ER and i could not find a parking space, I started mildly panicking. At last a spot opened up, I got Kendall packed into her chair with all her attachments, walked in to the ER to get in checkin line, and stood behind four or five people there with “older kids with coughs”. I’m not kidding. I started full out shaking at that point from nerves? Panic? Frustration at people who were wasting the ER’s time when my kid was most definitely doing something VERY wrong? I don’t know. But luckily a triage nurse spotted us, got my name, pulled Kendall’s file from behind the desk and got us into a room.

Even once in a room, things were moving at a snail’s pace (typical for the ER), and my anxiety level was climbing. Our nurse recognized this, started pushing the doctors to come in quicker, make decisions quicker – but it still seemed like it was dragging on. I still couldn’t put my finger on what was wrong with Kendall, but i knew it was headed in the wrong direction. The doctor knew she was going to admit Kendall, and was actually questioning whether she needed the PICU or not, but was leaning more towards the floor. At this point we had no labwork back, it was just that Kendall was leaning towards sepsis and this doc knew a lot of the Special Needs program kids go to PICU. Then the nurse started taking her blood pressures quite frequently, going to talk to the doctor, coming in to bump up fluid rates, doing more BP checks, and I finally said – I need to see her labs. I took one look at her labs and knew something was very wrong and said there is NO WAY you can send her to the floor, they are completely unprepared for her if she crashes. Our nurses (by that point we had two of them in there constantly checking things) were both emphatically agreeing with me that Kendall needed the PICU and she needed it NOW. Finally we got everything loaded up and headed up.

I know God’s hand was on her even then, because our one nurse who transported Kendall had just gone through a very similar situation with his wife not two months before this. (It turned out to be major dysautonomia, one of the many things Kendall deals with.) But he kept cycling her BP on the portable machine that traveled with us. The trip to the PICU should take roughly five minutes. Kendall started crashing in the elevator. We pushed her to her room where her BP was 50/0 (yes zero, it couldn’t find a bottom pressure after having dropped and dropped and dropped for the past hour in the ER), and that’s where things get fuzzy and crazy in my memory. I remember a LOT of people in Kendall’s room working on her. I stood against the wall where I could see her and she could see me and just focused on her eyes and prayed that God would make this all better. Without trying to be overly dramatic about a situation that WAS truly dramatic – it was literally like a scene from the TV show “ER”. There were orders being called out by one main doc, another doc working on the other side of Kendall, a Nurse Practitioner entering orders on one computer and four nurses working to set up multiple IV sites and lines on Kendall. Fluids were being hand squeezed into Kendall, epinephrine and norepinephrine were started and continually being bumped up as there was no response. Her BP’s were being taken every three minutes and they were continuing to drop. Throughout this time Kendall was still alert, but was starting to talk gibberish/hallucinate. One of the doctors had to start an arterial line on Kendall. Typcially this is done under sedation – but we couldn’t risk that for Kendall. She got some numbing medication on her skin – but the digging and poking and prodding with a long needle, deep into the underside of her wrist, 12 times – that was all done wide awake. And then they had to suture it in. It was about that time that we were ALL promising Kendall any playdoh craziness she could dream up. Anything to get her mind off of the spurting bloody horror show going on, get our minds off it, feel like we could make it better for her somehow.

during this time, Kendall began going into a worsening “DIC”. It’s not the kind of thing you want to google, but know that if you do google it, Kendall’s was that bad. She started breaking out in petechiae in the elevator on her face, and by the time we were getting her adjusted and hooked up to things and attempting to place PIV’s and arterial lines – there was blood everywhere. It was oozing out of her pores where the petechiae were, out of her stoma, around her broviac line….everywhere. Then her feet started turning dusky, then dark maroon, then nearly black. And then the blackness started spreading up her legs. Everywhere she had already had a bruise started turning this eery blackish blue color and spreading. I’m glad at the time I didn’t really realize what was happening, I just kept focusing on her eyes and face (at that time I was laying over her shoulders so they could get the art line in.

The doctors were continuing to call out orders for the pressers and fluids in an attempt to get her BP’s up out of the extremely low range they were in, I was just trying to keep kendall focused/coherent/awake. I leaned over that hospital bed in the most awkward position ever for almost three straight hours while they worked away at her. At one point someone asked me if we had religious preferences and I said no. They asked if she had been baptized and i said no. Then they asked if we wanted the chaplain to come up and do it right then and I’m not even sure where my mind was at that point but i think I had an inkling that they thought things were pretty bad and I remember firmly telling them NO – she did NOT need to be baptized because she was going to be JUST FINE. Then someone said Dr. Okun was there. I knew this was probably another bad sign. He is one of the Special Needs program docs, the one i had just talked to earlier that day on my way up to CHW. It was 2 am. We’ve been admitted plenty of times that late – and never once have any of our docs come to the hospital to help check us in or check in on us. He came and put his arm around me and just calmly asked me how she was, how i was, where was ben. I had tears in my voice and eyes as i said the big girls needed him tonite but he would be here in a couple days. He suggested that maybe i call someone to stay with the girls and get Ben up there quicker. i remember being  fiercely resolute at that point that i was NOT going to hear anything remotely negative and i said again that kendall was going to be JUST FINE and Ben did not need to come up in the middle of the night. I think I said something to him along the lines that Kendall needed positive thoughts around her right then, and any negative thoughts or unbelief in her strength could be discussed outside of her room.

i think my brain was grasping that things were going very south very fast – but some protective mechanism kicked in and is making a lot of the details fuzzyish. I think I finally collapsed on the couch around 4 am after texting ben that it was like a nightmare scene from ER and that she just needed a lot of prayer. We had gotten a positive culture called in to the nurse 6 hours after it was drawn – so at least we knew what we were fighting. Gram negative sepsis.  I knew this was not good, but my faith in Kendall’s strength and God’s faithfulness were unwavering that night as i went to “sleep”. I think we were back up at 6 am with more things going wrong with Kendall than were going right, and i remember thinking she looked like the stay-puft marshmallow man. All of the fluids/steroids/pressers had caused her veins to leak everything into her tissues – and she had gained four pounds in just a few hours (they weighed her on her bed so they knew they were giving her the right doses of all the meds they were ordering).

one of the “amazing” (only because i’m used to being up on the floor where it takes at least three months for one dose of tylenol to be ordered and sent up from the pharmacy) things about being here in the PICU – Kendall had a pharmacist right outside her door who was getting the orders for meds and running two doors down to the pharmacy, mixing or grabbing the meds, and running them back to the room. We had one huge cart and box here in her room just dispensing some of the more common meds (I’m thinking this may have been “the crash cart” but again – my brain was in protective mode over that.)

When I think back on how many people were in our room for hours after hours – I wonder who else was taking care of the other kids on the unit. It is probably a miracle beyond miracles that this kid did not code, but I think she was pretty gosh darn close to it. It makes me nauseated to think back on that night, and yet I feel like my brain needs me to go back to that night, ask the doctor the details, process through it so it is not stuffed away in some dark recess of my mind. i have a lot of thoughts and feelings about it that are all kind of mixed up but are below the surface. I am sure “the fallout” will happen at some point after we are home. For now I am still working to protect her healing space – keep it free from negativity and focused only on positive thoughts, lots of prayers, HOPE and above all healing. If I even think I need to go cry, I go out into the hallway.

I’ve digressed a little.

I think I’ve rehashed enough of Night 1 – and if you made it through reading it all, thank you. Hopefully none of it made you too queasy. i felt like I needed to get it all out. I’ll work on Part 2 now, which is more of what started to go wrong Monday morning, and a little bit more of all the medical=ese behind why she got so sick so quickly.

T.

smile.

My baby’s smile.

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

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

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

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

But not today, not right now.

Today we are working on getting Kendall stronger.

Today we are looking FORWARD, moving onward and upward!

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

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

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

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

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

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

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

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

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

 

Terra.

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