To the baby in the room across the hall.

Dear baby~

I don’t know your name.

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

I know only that today you became an angel.

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

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

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

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

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

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

You were gone.

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

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

I know what that code light means.

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

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

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

You made an impact with your little life.

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

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

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

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

 

T.

when the icu feels like home.

For those of you who actually try to keep up with my crazy random postings, this is going to start getting confusing. I posted my november 1 post that i had already had mostly written, and am now trying to fill in all the days between now and then, but I also need to update about Kendall’s current craziness, so my intervening posts may have random “future” information sprinkled in. Anyways – just go with it. Ignore the time space continuum and just read the stuff and don’t try to make sense of it. Got it?

Anyways – at the current moment I am sitting on the vinyl bed/couch in PICU room 501 of our home away from home up at Children’s Hospital of Wisconsin. And the fact that i am ECSTATIC about this particular room and this particular couch bed (aka Boxes o Bliss) speaks a little bit to the altered reality that is my life. I am excited because this room is huge. You don’t feel closed in by machinery and walls. There’s space to breathe. And this couch – it’s ONE PIECE!!! Well, three actually when you pull it out – but it’s like – the same size! i’ll post a picture on the terra talking page to show you what i mean. Even though I didn’t get to sleep until a little after 3 am, I got some of the best sleep i’ve ever gotten on the boxes o bliss, even without my eggcrate foam pads. (I didn’t bring them because I don’t anticipate we will be here that long!) It’s the little things I’m telling you.
But i realized last night, as I was pushing Kendall’s wheelchair and pulling my suitcase behind me as we walked to her room and the HUC announced “Patient has arrived to room 501” and cheers of “Hi Kendall!!!” echoed through the halls, that it felt a little bit like being home.

That is a weird thing to say, I know. And I know that there are some of you who will TOTALLY get that sentiment and others of you who think that’s an insane statement to make. And the truth of it probably is a weird combo of both. It is not normal for everyone, but somehow, it has become our normal. It is normal to have called ahead to request that one of “Kendall’s nurses” be assigned to her before we were even on the road to the ER. It is normal to be able to discuss labs at 1 am and recite med lists alphabetically while simultaneously helping the nurse hook kendall up to all the monitors. It is normal to feel a sense of relief that we are here, and settled, and that the weight of whatever has been bugging my baby for the past few days is no longer squarely on my shoulders.
So this is where we are at.

the plan for today is to get an MRI to make sure we aren’t missing an infection (as the local ER doctor suspected and Kendall certainly seems symptomatic of), and if not, to run some other labs to make sure we aren’t missing something. In case this is confusing – i’ll try to recap. I realize that many times on Kendall’s page, and even on the blog, I often skim over or just don’t address at all some of what she actually deals with every day. I don’t like focusing on her pain or all the things she can’t do or all the medical stuff she actually has to deal with every day. I realize that for some people, recounting every single medical procedure their child endures is part of how they deal with it – but for me, it’s just part of life. when I am forced to stop and list things out or analyze just how very much we are doing for our medically complex child at home, it breaks my heart a little. So i’d rather just keep my head down and barrel through. She endures it without complaining, so shouldn’t i too?
Anyways – she deals with a lot more than what most people know. Probably more than most people will ever know or understand. The things Ben and I have learned to do at home that are beyond “hospital level of care” sometimes shock me. It is just what we have to do, so we do it. And sometimes it shocks me a little bit when i realize that her day to day care is more than even what could be handled by our local hospital, or even the regular patient floor here most of the time.

But if you recall back to her last big hospitalization in October – she was having a lot of random pains that seemed to shift from her visceral organs (which was the focus of our investigations for a while) to her joints. She refused to bear weight on her left foot and we X-rayed it every which way looking for a break. It was very ankle-centered, but didn’t “look” bad so we just shrugged our shoulders. Then it was her hip. Then her other hip. Then her elbow. Then the other ankle. Then her shoulder. Then “just everywhere mommy”. It was nonstop but there was no “thing” we could pinpoint or say “ahhhh yes, this is why this hurts. We can fix it by doing that.” At the time she was still on the Dilaudid which would help the pains, and we were ok with that. And then she finally weaned down from the Dilaudid to just the Ketorlac (basically it’s like IV ibuprofen). And that helped keep things under control. She started two other meds for “pain control” so we started weaning down the Ketorlac in an attempt to keep her tummy happy (long term use of it can start to cause Gi bleeding). And as we were weaning that anti-inflammatory pain relieving medicine, this particular wrist issue started getting worse. Our default response is to kiss it, tell her she’s ok, and then otherwise leave it be. She is not a kid who gets babied a lot or has her every ache and pain attended to. We would literally be chasing our tails all day long!  “rub a little dirt on it” is basically the adage we parent by!
So after a couple days of consistent complaining and her starting to guard it more and not use it at all, we were a little suspicious. We gave her the Ketorlac and that seemed to keep the pain under control better, but we still had no idea what, if anything, was wrong. Monday morning she woke up and it was HUGEnormously swollen. At that point I started to suspect maybe she had a small hairline fracture somewhere so after a packed full Monday morning, we trudged to the ER.
The problem with a kid like Kendall is that you can’t just look at her and say “oh, well since it’s not THIS obvious thing, it must be nothing.” Her body is notorious for throwing out red herrings to have us chasing down one trail while really the problem lies somewhere else but her body doesn’t interpret or give “i’m in trouble” signals appropriately. And the thing is, the stakes are starting to get really high with what could go downhill if we guess wrong. Again, i think I kind of downplayed how very very desperately sick she actually was in September, but it was crazy. It was hard to watch. It is harder still to try to process through all of that and some of the baseline changes she has had and try to find a balance between wanting to break down and cry, and keeping a positive attitude that it’s hopefully just temporary setbacks.
And as a completely open and honest aside here – I can tell you that it absolutely slays me to have people telling me that. I know that most people who say things like that:”Well hopefully she bounces right back. It’s just temporary. She’ll be back to her old self in no time.” – I know you mean well. i know you say it from a place in your heart that wants to not think that bad things can really happen to kids/people you know. I know this because i know I have been guilty of saying it before. But sometimes, in the throes of the storm we have all come through over the past couple months – it doesn’t comfort me. It makes me want to lash out, actually. Because I have watched this kid fight like HELL to get through what she’s gotten through, and it’s been really really really scary the past couple weeks but i’ve had to hold it all together for everyone else, and for myself, and for Kendall. This fight took a lot out of her. And while yes, her spunky fighting spirit is still there, her body is still VERY tired and weaker than I even like to admit to myself. YES I hope she continues to improve from that. And hey, maybe this random joint stuff is even part of why she hasn’t fully regained her strength/endurance.  But unless you are currently walking in my size 9’s, you don’t know. And this little vent is truly not directed at anyone or anything that’s been said in particular. I’m not saying it to make anyone feel bad. I’m saying it because it’s part of my committment to being more open and authentic on my blog about how I feel going through this journey. And right now, today, this is how i feel.
my kid tried to die twice in the last two months and that sucks. It’s brutal on the spirit. No two ways around it.
BUT – I do realize that she did not die. And she is still here, fighting, kicking, being sassy.
she’s not doing that lightly. She’s doing it because she is amazing. And because God has a much bigger plan for this girl than any I could ever dream up. And when i hear things like the flippant “oh she’s on her way back. She’ll be fine soon! Etc. Et al..”, it makes me feel like that’s downplaying her amazing intense battle. That’s really what it comes down to I guess. I just want people to understand that this kid literally fights for every day of her life. and she does it awesomely. She makes it look easy. she does it with an attitude of joy that i could not even hope to have if I were in her shoes. But she does it.
So that’s what i focus on. It doesn’t mean I don’t still sometimes need to process through the scariness of what we’ve witnessed the past couple months. But I choose to put a positive face on, and look forward with hope, because that is how she lives her life.
I realize I’m just kind of ranting here and I hope you’ll forgive me for that – blame it on only getting four hours of sleep last night. But I just kind of wanted to get that out.

Please know that i’m not saying you can never say things like that to or around me. for the most part, you’ll get my standard response of smile and nod in agreement. Because of course i am the most staunch believer in my girl’s ability to “bounce back to herself in no time”. Of course I believe that and hope that and pray for that. But i’m also the one who sees the ups and downs, the throes of pain and the elations of success at accomplishing that baby step. I am the one who pours myself into making sure that she has more good days than bad, that someone stays a step or two ahead of the craziness of her little body, that while we all paddle furiously under the water, all you see is smooth feathers and floating on top of the water.

i’m so far off topic i’ve confused even myself…

anyways – that’s where we are today. Hoping for an easy answer, an easy fix, and possibly even getting home tonight if there’s no other red flags. Just a speed bump on the road to recovery. But it’s still the unknown. And at the end of the day, I’m the one who has to decide if I’m comfortable taking her home again with unknowns, and not knowing if she will continue to trend in the right direction, or if she will crash, and having no reserves, crash hard. I feel like sometimes that term is overused. It loses it’s meaning. I don’t mean that she will be lethargic and tired. I mean that her body will not even have enough of the right hormones available to keep her heart beating in rhythm, to keep her blood in her veins and arteries so her blood pressures remain stable, to make sure that oxygen is pumped efficiently to all of her important organs. These are the things that go wrong when Kendall crashes. It is scary and it is our very possible reality.
Taking her home requires that I have faith in a God who is bigger than my fears. It means surrendering to whatever might lie around the river bend. It means that as much as I try to retain control over every little last aspect of Kendall’s body via her labwork numbers and her vital signs and her trends in BP/HR, that i have to admit that I do not have control, and in fact, there is no such thing as control.

So….
We wait. Wait for MRI to be ready for us and wait for the contrast to be pumped by her heart through her veins and wait for the machine to take pictures between magnets and wait for the pictures to be interpreted and wait for answers and relief and a plan.

And even though it feels better to be here, in the safe walls where the medicines are and the machines are and the big ipad that tells me what her body is doing via labwork is, it is not really home. I miss my other babies and I miss the neverending laundry and the semblance of normal we were just starting to put together. I miss the semblance of normal our lives were a couple months ago.

But if you have to be stuck somewhere, this is a good place to be. My other babies are in good hands too. I am SO so glad that right before I got the call to head north, I had spent over an hour with Kaylen, having “Special mommy/kaylen time”. She thrives on that kind of thing, and I am so grateful I was able to pour attention and love into her for a little while before this trip.
Anyways – i’m not even really talking about anything anymore, just spewing out random thoughts as sentences.
I think maybe I need coffee. and some chocolate. I knew I should have grabbed that bag of halloween candy on my way out the door….

I’ll update Kendall’s page when I know more. And i’ll be backdating a couple posts here too. (You’ll probably have to click over to the actual blog and scroll down – they don’t auto-post to FB when I backdate them!)
And I think that’s about all I have to say about that today.

 

terra

Even Diana Prince Can’t do it all.

bonus points if you know who Diana Prince is without having to click this link. (It’s just to wikipedia i promise.)

*Insert loud dramatic sigh here*

you guys – this is hard. Really really really hard.

and the next time I think I’m Wonder Woman, I want someone to slap me really really really hard.

Because I’m not.

I’m exhausted and I ache all over and I’m shaky from either lack of real food or lack of sleep or just overall running on sheer adrenaline for…like a month.

I know you are all SO HAPPY for us to be home, and believe me, I am equally as happy that we made it home. But like I have referenced before, getting home is usually the start of the real battle. Discharging from the ICU is not a preferred course of action for a good reason. Most notably that I am only one person, and in the ICU we at least have two persons – one for the day and one for the night. Because running medications on 5 different Iv pumps overnight requires the ability to be awake and cognizant.

I wish I had a bunch of cute pictures of how happy she was to be in her own room, to see her sisters and our neighbor friends who came to say hi. But I don’t. Because that only lasted for about 20 minutes before the stress of the long drive, of having to be upright for that long, of all the excitement after laying mostly still for 3 weeks and still being pretty gosh darn  sick – all of that hit at once. And our courier from the pharmacy was not here with the magical medications we needed to bring her relief. And my older three kids were excitedly telling me everything about their last few days and i wanted to hear them, i wanted to sit and hold them endlessly and just soak them all in again, but I couldn’t. I had a screaming baby and medical supplies literally all over and about four loads of laundry dumped by the washing machine and NO MEDS to help stop the pained screaming and Ben left for his business trip in the middle of this chaos and it just made me want to curl up in a corner sucking my thumb and rocking myself to sleep.

But I couldn’t do that because children needed showers and help with homework and mommy time and Kendall needed all new IV lines set up for when the medications did come and she was too cold and too hot and wanted ice packs here and blankets there and this movie on no that movie on and then her nurse accidentally threw out a major part to making her oxygen concentrator work last week so we were trying to jerry-rig that and then the medications FINALLY CAME and we have pumps and IV lines all over the place because there isn’t enough room on her IV pole for all the pumps and all the bags of medicines so we are taping things to walls and using lamps as makeshift IV poles and we finally finally finally got Kendall some relief at 9pm and I got a few minutes of snuggles in with the big girls and then the nurse and I had to go over all of the new medications and all the new paperwork that needs to be filled out. So I got my nice hot pressurized shower at about 11:15 and then had to stay up to run meds at midnight.

Got to see the beautiful full moon as it started it’s arc behind Venus. It was ALIVE last night did you see it?? I just sat and stared and tried to soak up the quiet amazing beauty of that glowing moon and sat in awe at a God who could put on such a fabulous show in the middle of the dark night. And was reminded that that is when He shines the best…when things seem the hardest, the darkest…that’s when you know you are truly held.
So I set my alarms for 2 am and 4 am and 5 am to run Kendall’s other meds and I got in bed for a couple hour nap and I got up to reset her heartrate alarms and to untangle lines that were causing occlusion alarms and to run the right meds on the right pumps hanging off lamps and taped to dressers and I prayed that my hands would be guided and that I would not make any mistakes in my overly sleep-deprived state. (Did I mention that the last night in the hospital I only slept from 5:45 am til 7:15 am because we were working all night to keep Kendall’s pain under control???)

So here we are this morning and I am definitely feeling FAR less than wonder woman-ish and I am trying to organize the chaos of paperwork and new medications and charts for the nurses in the few hours I have before her next set of medications needs to run. But we survived the first night. That is huge. Today is another day and we can hope that maybe today is the day her pain lessens and i can run a few less meds tonight. I got the big girls on the bus and i shakily made my way back home with a list on my mind of all the things I needed to do and I looked up and there was the most beautiful creature I have ever seen in my life – the Dunkin Donut Fairy with a large coffee and a pumpkin muffin and I just hugged her and tried to stay upright because I just NEEDED that…..I needed it in a way beyond just craving sugar and caffeine I just needed to know that the strength I needed was going to come minute by minute and hour by hour but when i needed it the most it was going to come. (thank you miss B – you are truly beautiful inside and out – even without coffee in your hand for me! <3 )

I do not know what possessed me to think I could replace our fabulous nurses and amazing care from West5 at home by myself. I honestly have no idea. I realize now that I cannot and will not ever be able to do what those people do for my daughter without MAJOR major headaches and issues. I cannot thank them enough for ALL of their care and love and concern for my daughter. The ones who get to work for shift assignments and fight over who gets Kendall that day or night, the ones who lose the fight and still pop in to say hi to us, the ones who win the fight and provide outstanding care day after day, night after night. the doctors, the techs, the HUC’s, the discharge planners who love my last minute requests…..You guys are our home away from home and oh how I was torn last night as I wanted to plop on the floor and cry because I couldn’t make her pain go away and she was doing her fever thing again and I just wanted to be home here and i wanted to be home there and i just wanted this all to be not my real life right at that moment. but I know any one of you up there would have told me to get off the floor and stop crying and do what needed to be done for kendall so I did.

And we will get through.

your prayers, all of you, near and far – they will get us through. The food you are signing up to bring us, the cards you are sending, the love you put into my inbox and my phone via texts and the hugs I get when I see you in the store – these are how we will survive. how I will survive. And If I survive, we’re all surviving.

Minute by minute, hour by hour, we are surviving.
now I’m going to do my best to channel my inner Diana Prince, original Warrior Princess, and get shit stuff done around here.

See you on the flip side.

T-crest out.

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.

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