But the fighter still remains.

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

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

“I am leaving, I am leaving….”

But the fighter still remains.

 

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

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

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

It has been a long couple of weeks.IMG_7108

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

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

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

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

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

I love you.

 

~mommy.

 

 

[Read more…]

a whole handful.

Five.

Five fingers on her little starfish hand.

Five years.

Five.

Do you know how amazing this is?

I have tried to put it into words myself –and feel that I fall so short.

I’ve watched friends have to bury their children well before they reach 5 years of age. I’ve had to watch my baby almost lose her chance to see this birthday.

I do not take this birthday lightly by any means.

I rejoice in this birthday – I celebrate it with respect and awe and thanks. Thanks to God for the gift of her life, thanks to our family and friends who support us every day on this journey of life, thanks to the doctors and nurses and other medical professionals who help keep kendall running every day. This day would not be possible without any of you.

On this, the last day you are four, I wanted to tell you this:

My dear baby kendall quinn –

from the moment you were born, you have fought with all your might to survive. to LIVE.

and live you have. you live each day to the fullest. You are excited about every new thing, every new challenge, every opportunity that comes your way. You show me what it is to see this life for all the beauty it really holds.you have taught me to not sweat the small stuff, and what it’s like to sweat the really really big stuff.  Your sisters taught me how to be a mommy – you’ve taught me how to be a momma bear. Fierce, loyal, unwielding.

You have taught me so much in your five years here, it’s as if i didn’t really know what it was to live before i met you.

and i’m just so very proud of you my baby girl. I cannot tell you that enough. I am proud of how you endure all that you must every day with a smile on your face, and i’m proud of how you love unconditionally, and i’m proud web3 of how you have taught so many people to keep on keepin’ on.  I’m SO proud of you for putting up the fight you do, when the darkness of those infections threatened to overwhelm you, you looked them in the eye and said “not today”. How very brave you are! You really are a warrior princess, kendall quinn. Your name means that you will be a strong leader in the valley.  When we chose that name for you, I had no idea just how true it would be. You have been in the valley of the shadow of death more times than any child should – and you have come out stronger on the other side. you have taught me how to handle  life in the valley, and life on the mountaintops.

 

aff6b10a-deeb-4083-91dd-a144018246f9 I have no idea what this year ahead holds for you.

My hope is that it holds nothing but health, happiness and so many good things. Your one true wish – to meet and swim with Ariel – will be granted. i hope it is the time of your life. I hope you chase the wind and touch the sky. I hope you become even stronger and even more amazing in this year ahead. Most of all – I hope you know how very much you are loved, and how very very proud I am to be your momma.

 Kendall as Ariel 027

you did it baby girl. you became a whole hand-full.

you’re my hero, for always.

 

keep on keepin on~

love, mommy.

Thankfulness.

Maybe you have friends who are doing it too – taking the “thankfulness” challenge and posting something on facebook every day that they are thankful for. I think it’s a swell idea – and I love reading other peoples’ posts about what they are thankful for that day,  but it isn’t something I have thus far felt too compelled to do. Maybe i’m in too many other challenges this month, maybe i just like to buck all the trends. (For the record, i never tried to play the stupid giraffe riddle thing either.)

But probably it’s more because I try to live my life every day in a state of thankfulness. Maybe I need to be better about saying it – so i’ll try to capture a bit of my thankfulness in this post.

I am thankful for this life we live – craziness, insanity, sleepless nights, heartaches and all. I am thankful that the super scary times make me realize just how precious the good times are.  I am thankful for the people we have met because of this journey, this life we lead.
I am thankful for a vast network of amazing doctors, therapists, nurse practitioners and nurses, pharmacists, supply delivery people, lab techs – all who keep Kendall going so we can keep our family going. I am thankful for their trust in our ability to care for her at home. I am thankful for friends and family who are willing to come alongside our crazy lives and swoop in to save the day by picking up the other girls when Ben is on the road and I have to  be three hours away in milwaukee.  I am thankful for our car that even though it has autonomic dysfunction and blows the heat when I need the aircon, it gets us back and forth to the hospital safely. I am thankful for oh so many of you, and the many little and big things you do for our family, for me.

I am just so so thankful.

I hope i have told you all thank you enough.
For the amazing Krew that put on the 5K/Fall Fun Fest for Kendall – thank you. I will never be able to thank you all enough. For everyone who came that day, and ran, or helped, or donated, or bid on auction items – thank you.

For the Tacoma contingent that ran your own 5K on a blustery day – thank you. Thank you for loving our family from afar and for your continual love and support~

For all of the good things of life – big and small – I am thankful. I am always thankful – and I need to be better about vocalizing that thanks.

For the amazing staff at Versed Salon here in Plainfield – thank you – for the pampering you gave this tired, frazzled, gray-haired mama, and for the amazing amazing gift you are giving our family next week with the Cut-a-Thon for Kendall – thank you so much.   (side note – if you are local and you have hair and you need it cut anytime soon, please consider coming to this event! It is so amazing of this place to do this for our family and we are so grateful for their support!)

For even the tiredness, the late nights, the frustrations – I am grateful. oh how grateful I am that I am able to have a child to wake me up in the middle of the night, so grateful for the gray-hair inducing days of stress caused by her mind-boggling logistical supply & demand, so grateful that at the end of the day, all of that stress is rewarded with a warm-bodied hug and cuddle and “i love you momma”. I know far too many who would endure what others would complain about – if it meant having their child back in their arms.

So I am thankful. I have a heart bursting with thankfulness and i pray every day that I live in that thankfulness. I pray that those of you who need to know, know just how very much you are appreciated – by me, and my family.

For everything, everyone, every day – I am thankful.

 

thank you~

 

terra.

Let’s do this

So I signed up to do this crazy “write a blog post every day in November” thing – and now i’m like – uhhhh what am I going to write about?
I don’t know.  (yes it’s called #nablopomo – national blog post month.)

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I know that when we are in the hospital words pour out of me – they are my therapy, you are my therapists. But sometimes I think it is in the quiet times, the “normal” moments that I need most to get things out. So maybe it will just be that I get out what rolls around in my head most days. Maybe I will bore you all with childhood stories. Maybe I will make random lists of my favorite pairs of socks.
Since I have also concurrently joined a “Planking Challenge” and an “It Works” product/healthy eating challenge, i’m sure you’ll be hearing a lot about that. For the record – I cannot plan very well. I have no idea how the planking one is going to turn out. Based on the large pile of awesome Halloween candy I’m currently staring at, I’m not so sure the healthy eating one is going to turn out real good either.

IMG_2367 But its time for some changes. This weekend we are having some declutter and clean up/clean out time. NOW it finally feels like it can be fall. NOW I’m more ready to start preparing for “the holidays”, a time of year i absolutely love. (for the record – I hope to have this desk area whipped into shape also by December 1.)

It’s been hard to not feel like I was living in a little bit of a time warp the past few months. We had no idea how life was going to go, bringing Kendall home from the hospital in August. We were told basically to enjoy every minute with her. It felt like the other shoe was in constant danger of dropping. And that’s not to imply that it doesn’t still feel like that sometimes – just that I think I am finally in a place where I can breathe a little bit. I did not realize this until the other day – but when we were given a “3 month countdown” – basically that she needed to make it 12 weeks out/3 months from her last infection in order to have any kind of chance of surviving another infection – I did not realize that that 3 month mark would hit right around her birthday. It will be emotional for me – hitting that 3 month mark. Seeing her turn 5 on her actual birthday.

But all of that just means one thing – it’s time to get busy livin’, or get busy dyin. I’m ready to just start LIVING again – making an effort to eat better, move more, DO more. I’m ready to make changes and see results and keep pushing myself to do more, be more. On November 19th I will be speaking in front of a group of women at a Bible study type program, talking with my friend Kelly about Special Spaces, and about Kendall’s story as  is related to their mission. This is big. Not because it’s talking in front of people, and not even because it’s talking about Kendall. But because it is the first time I’ll be talking about kendall’s story for the sole purpose of spreading awareness for all she goes through, for the purpose of inspiring faith or hope in others.  For the handful of you who have heard me tell the whole story of the night Kendall crashed so hard in July, you will know that this is, to me, a first step in fulfilling what I am compelled to do, telling Kendall’s story.
I have to flesh that out more – and am too caffeine-deficient at the moment to do that. But it will be one of the blog posts soon.

Anyways – It’s a new month. It brings with it new possibilities, a new start, a new season. What are you doing to challenge yourself this month? If you aren’t doing anything – feel free to join in with me on one of my challenges – planking everyday, using ItWorks! products (if you haven’t heard about these or want more info – let me know! I’d love to share more about them with you!), blogging every day….what else can I cram in here???
But mostly – I hope it is a great month for all of you. The month of Thanksgiving, thankfulness, gratitude.

One last little bit of random stuffs for today – if you are not already a “fan” of the Hope for Kendall page – we are trying to get her page up to 10,000 members on the “Kendall Krew”. You can even like it from right here – it’s up on the right hand side – just click like! Then when you are in facebook, share it with your friends, invite your friends from on the page, spread the word! Last year on this day I posted the challenge that we wanted to hit 1000 Kendall Krew by her birthday – and look how we’ve grown in one year! So amazing! her story, her hope, her joy is touching so many people, and I am so excited to see how God continues to use her, and our family, and all of you – to weave together an amazing story out of what seem to be some dark circumstances sometimes.

Ok I think that is all the boringness I can come up with for today. So glad to have you all along for this crazy ride!
Have a beautiful Friday and an awesome weekend!

 

T-crest out.

Celebrate good times.

Come on!!!

(If you don’t already have a Kool and the Gang song in your mind then……you need more fun in your life.)

So now that we’re all jammin out to some good 80’s tunage, here’s my actual blog for today.

As usual, it’s a motley mix of emotions and different things on my mind.

My heart still aches for my friends who lost their little boys recently , and for all my friends who have lost their children to this cruel disease. Every day, at least once a day, I am reminded of the fragility of life. My facebook news feed is filled with medical crises and issues that i never would have thought I would be able to read with a calm sense (and understand them even!). Daily I am playing a balancing game of running Kendall’s outward actions against what I perceive to be her internal issues. I am constantly counting down the days until our next IVIG infusion, and counting UP the days  we are removed from her last infection, or from broviac placement, or from any number of different medical milestones. It is always present. Even when it might seem like are “getting a break”, there really is no such thing.

She has had a GREAT past couple of weeks. I have been able to breathe a little bit easier. I haven’t had to post a whole lot of crazy medicalese. But this does not mean that we are just cruising along. I may make it look like things are smooth sailing – but underneath the surface I am treading water with all I have. Kendall’s care never stops. We have good nursing these days, and that IS helpful, don’t get me wrong. I am able to get a couple hours here and there where I can just be “me” – go read a book in a quiet spot, peruse the aisles at target leisurely for an hour, spend a little more time with the big girls apart from having to constantly be giving meds or assessing kendall. But at night, pumps still alarm. Pumps still malfunction and I have to try to calculate missed fluids x hours remaining co-sign tangent (y) to reprogram the pump so she doesn’t have a crash in the morning. i have a funky little device that tracks my daily activity and my sleeping habits (because i need more of both!) – and seeing my sleep patterns every morning actually explains SO MUCH about why i feel exhausted every day of my life.

So yes, Kendall IS DOING GREAT – but it still requires Herculean effort to keep her there. Effort from me, and prayers from all of you. I know it is not a solo effort on my part. yes i am the most hands-on, but it is not by my power that Kendall is doing well. It literally takes a village to keep our family running. I do not for one second take all of that credit. It is the village of our family pitching in to help with the other kids, close friends who arrange and bring meals because cooking is just one more thing that i am too exhausted to do by the end of the day, friends and acquaintances who can’t be hands-on help but can send a gas card or $10 for something fun for the girls.

And this weekend, it will literally be a VILLAGE, the village of our neighborhood, gathering together to celebrate this sassy little red-head who has touched a whole lotta lives with her spunk and feisty will to live. I am honored and humbled at all the effort of our friends and neighbors to put this amazing event together. I cannot fathom how many hours have been poured into making an event of this size come together – and I know there are people who we have never even met pulling strings for this to be an EPIC amazing day for Kendall! I try not to let some of the ins and outs of a kid with needs like Kendall’s creep in to the blog or her page too much. But it is often overwhelming. We have been so very blessed, and we will constantly seek ways to pay forward all that we have been blessed with. Beyond the fundraising aspect of this event, I hope that it is successful in getting more awareness of mitochondrial disease, and the battles that some littles fight every single day. I hope that the people who have poured heart and soul into this event have an inkling of how amazing their efforts are and how  Kendall has had……a year.

In many ways it has been a good year, and in so many others it has been one of the scariest years of my life. here is one of those other countdowns that i rarely breathe out loud. The countdown to 5. 5 years old. I know WAY too many children who never made it to that milestone age. And there were far too many days this year when i didn’t know if Kendall would make it there either. But here we are 30 days out. thirty more days. One month. And yes, we will be celebrating a tidge early by having her birthday celebration be this weekend –but the point is – we have SO MUCH to celebrate. So we will be doing it up big. If you are anywhere in the area – we’d love to see you! Just come by and say hi – see all the fun activities on the flyer i’m attaching. If you can make it in the morning for the 5K – awesome! If you can’t make it till the afternoon – that’s great too!

 KendallKrewFlyerFinal

We have some amazing friends and family scattered around the country who are doing their own versions of the Princess 5K – and there’s a link for that too if you wanted to do something to celebrate in your own way!
one of our friends even challenged her workplace that if they raised a certain amount she would wear a princess costume to work all day!!! I hope someone is taking pictures of that!

It is this Saturday, October 19th. We have a huge countdown between now and then – the countdown against IVIG reactions! For those keeping score at home, last time, Kendall started reacting at 36 hours, was in the ER by 48 hours, and was in the ICU 6 hours after that initial bad crash. And stayed through the weekend. PLEASE PLEASE PLEASE pray against a reaction of that kind with us.  The countdown is on!

so let’s celebrate the GOOD times – the every day battles won – like waking up and breathing in and breathing out and grabbing life by the horns and LIVING it. I hope and pray for you that you have something GOOD to celebrate about the everyday.

Pumps are alarming again – that must mean IVIG is done infusing and it’s time to flush and pack up this little cubicle that is destroyed with dried playdoh and tongue depressors and sample cups turned playdoh tools….

Keep on Keeping On.

 

terra.

Monday mania.

Ohhhh monday….so cruel with your 6 am wakeup calls and freezing cold weather.

I’m not ready for fall, not ready for these dark morning and dark evenings, not ready for the cold!

But i AM ready for this week, I think.

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Last week was a not so fun week. Just too many frustrations and too much going on and not nearly enough sleep for me to be able to handle it all. It had it’s great moments too – like being on the radio with our Special Spaces friends (twice even!), and taking the big girls to Fright Fest at Great America, and having good consistent nursing coverage, and beautiful weather for most of the week.
But overall – i’m glad last week is gone.

Our car was in the shop for almost two full weeks. Ben had to take his car so he could do his travelling for work. THANK GOD for putting good people and good friends in my life who have extra cars so I can use their mini-van to schlep my offspring around in. I mean, really, who does that? Let’s someone have their car for two weeks? I’ll tell you who – my best good friend does. There aren’t enough words to thank her. There MIGHT be enough chocolate bars to thank her if i raid five stores around me. So as much as i want to complain about the fact that the stupid shop ordered or received the wrong stupid part and still couldn’t manage to find us a loaner vehicle for TWO WEEKS – I really have nothing to complain about. By some creative bill juggling and good timing with paycheck time, we were able to pay for the repair to our car. God is good, all of the time. And all of the time, God is good.

I do not say those words lightly.

It is very very very hard sometimes to say those words. It is hard to sit in church and actually sing some of the songs we sing. It is hard to listen to Christian music on the radio because sometimes it seems so darn fluffy.  and sometimes i want to scream. It is not so easy to actually sing “take everything Jesus” because trust me when Jesus decides to take everything you will find ways to take those words back in a heartbeat. I’m digressing. (And for the record – i do still sing those songs, but it’s usually with tears streaming down my face because i KNOW how hard this is, this letting go and letting God and meaning it.)

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But God IS good. I don’t take any of our blessings for granted. and we ARE blessed.

this is losing focus real fast….actually i’m not sure it ever had much focus.

Ok – i was talking about how last week was a crazy blend of crappy and awesome. More polarized than typical.  I’m glad it’s over. I am ready to take THIS week by the horns and make it good. i started this post this morning, full of vim and vigor. And i did get a lot done today. But then my stupid eye started doing it’s thing where it tries to take over control of my brain and they fight and it hurts and i look like rocky balboa after three rounds with the russian dude on steroids. And it totally sucked my will to live. And then I started telling Ben about all we have to do this week while he is gone for work and he asks me if i’ve ever thought about slowing down……

Of course i have! i think about it all the time! Slow down….psssshhhhtttt.

someday i’ll slow down. when i’m 89.

til then, we have eye dr appointments and school conference meetings and dance practices and planning for two day trips up to milwaukee for dr appointments and a child who requires roughly 8 hours of direct, hands-on, highly skilled medical care a day. Rest is for wimps – look out I have a world to conquer!!!!!

But really – in between all the running, there is a lot on my mind. During our radio interviews this week with the endearing and loveable Frank Fontana, i had a lot of time to think back on our journey with Kendall. And what a journey it has been. We will be celebrating her journey with an AMAZING day of celebrations on October 19th. I will put up an entire blog post related to that event at some point this week, because we would LOVE to see you there. this will be kendall’s “birthday party” that we typically have at a large venue around her birthday every year and invite everyone to. I could not think of a place large enough to rent out that wouldn’t break the bank – and this event just seems like the perfect time/place to celebrate HER.

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Anyways – lots coming up this week – hoping I have time to update throughout! tomorrow Karissa has an eye doctor appointment to make sure that her sudden regression in reading abilities isn’t due to worsening eye problems. she already wears bifocals/progressive lenses so we don’t “think” that’s the issue, but before we go down a long and wearied path with the school, we may as well make sure it isn’t something “easy”. And who knows, we could be surprised! Before i pick her up though, I have to a.) somehow get my own contacts in my eyes since i cannot drive in my glasses very safely, and b.) go help out in Kaylen’s classroom for an hour or so.

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did you make it this far??? you should win a prize if you did. Oh – speaking of prizes – we will be having a cute halloween costume photo contest on Kendall’s page soon! Keep your eye out for that because I think it’s going to be lots of fun!

ok now i’m going to sleep.

peace out party people.

 

love and hugs~

terra.

Just doin’ our thing.

We are still here, just cruisin along, doing what we do. Getting through each day, trying to soak up and enjoy the most out of each day.

for the most part – this means we get up, do the school craziness, i do what I can on the kendall craziness, we play playdoh, sissies come home from school, and we do the dance craziness. (notice a theme?)  we still don’t have full nursing help, which is both a blessing and a very hard thing to deal with some days. i am LOVING spending time with just kendall every day. She is loving it too. we play a lot of playdoh. Read a lot of books. Watch a LOT of princess movies! And i try to soak all this up. Try to hold on to how precious this time is. Try to not beat myself up for not having the girls’ rooms cleaned or the floors swept or the laundry caught up.

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I have been trying to find time to sit and write this post for three days now. In that time, Kendall has gone from “totally fabulous!!!” to “i’m a little nervous about all these crazy things she’s doing”. It’s nothing huge or major, or really anything that I can put my finger on for sure. It’s just “a wobble”. A teeny little variation off her baseline. Wobbles that she was doing prior to her last two crashes. i’m trying not to compare apples to oranges, and read too much into things. On the flip side of that – I’m scared to death that ignoring her small little warning signs will lead to another crash.  I’m so grateful that today we had our nurse who knows kendall’s baseline and could see for herself that kendall was definitely ‘off’ today. I hate trying to make all these decisions just in my own head. It’s so much pressure. And the consequences of choosing wrong are so huge.
But we have SO much fun stuff coming up this weekend, and daddy is all the way in California, and really, it’s not like she’s doing anything THAT out of the norm. She’s nauseated, has a nearly non-stop headache, and a few wonky labs. No fever, great blood pressures, heart rates well within Kendall’s normal range. Hoping that it is just this crazy heat and her body’s inability to compensate well for it.
Tomorrow it is supposed to be hot still, but storms in the evening should cool it off. I’m very hopeful that this equates to a turn back to normal for little miss. I don’t function well when every minute of my day is spent being a non-stop diagnostic calculator for Kendall. Nothing else gets done. I try to not micromanage her issues. I try to keep things moving here in our house. I feel like I rarely succeed at anything. Except that at the end of every day, I can collapse into bed and know that at least for that day, I succeeded in keeping us all alive. Sometimes that is as good as it gets.

but enough of that.

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we have one more day of therapy (wednesday) – and in a side note, that is every day for the past week! ugh! – and then thursday the Special Spaces Chicagoland team comes to take over our house and do Kendall’s room makeover! Squeeeee!!!!!! We will have to be out of the house from Thursday afternoon until the big reveal on Friday evening. YES there will be tons of pictures and YES I will post them here as soon as I possibly can!
Saturday will be spent putting all the girls’ clothes back in their closet and moving medical supplies into Kendall’s new space, and then sunday is the start of Mitochondrial Disease Awareness week, and is kicked off with our chicago “energy for life” walk. I had had a goal to have 50 people on team “Kendall Krew” (it is our first year having a team at the walk!) – and I think we might be getting pretty close to that!
and then after ALL THAT excitement this weekend, we get to spend Monday and Tuesday in Milwaukee at CHW for appointments and Kendall’s monthly IVIG infusion.  Oh my goodness I’m exhausted just thinking about it all! But SO glad we get to do it all!

This is turning into just another boring update and i’m falling asleep typing it. mornings come WAY too early after a night spent checking alarms and giving meds.
As usual – I have so much I want to say/type/blog about – but the tiredness is making it hard to form coherent thoughts. So at least this is an update of what is going on – and hopefully the other things will get a chance to come out soon enough.
I’m so thankful for all of you who come here to check on things even when its been weeks since my last update! Please do’nt stop doing that. Some day I will get in a good rhythm and have lots of fun randomness for you! I might even have more crazy videos or horrible drawings for you soon!

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ok i’m still rambling.

have a good {fill in the blank with whatever time of day it is for you}.

love and hugs~

 

T-crest.

leaving.

my thoughts are random and jumbly right now, so please forgive me if this post is hard to follow. I am ecstatic that we are all working today on plans to finally be leaving this place. But what will it mean when we leave?

I had a very very very hard conversation with Kendall’s doctor on Tuesday afternoon.What he told me didn’t surprise me in any way, but saying the words out loud are not any easier. Kendall is going to die from another infection like the last two she’s had. it may not be the next one, or even the one after that. But at some point her body will succumb to the war that wages in her body between the bugs and her blood. I almost watched that happen before my very eyes this last few weeks. That Friday night that they removed her line – I don’t think i ever really addressed it here, or on facebook, or much of anywhere really – but Kendall was in a very very very scary place for that entire night. I need to do a separate post on that night because it is full of emotions and pictures and thoughts and feelings that need to be preserved but not quite ready to be processed out loud yet.

So to hear that she could die from another infection – not shocking. i’m not stupid. i get the dire straits my child is in.

BUT – I also believe in a huge God, who is one hundred percent in control of Kendall’s story. HE will be the one to write it. It is hard – so very hard – to cling to that faith. And yet, right now, that’s really all I have. Hope. And Faith.

We had another long meeting yesterday afternoon that was with more of her team and was full of much more hope. Plans were created, meds were tweaked, understandings were reached. We all know that we HAVE to buy Kendall some infection free time. We have GOT to break this current infection cycle. The cold hard truth is that there is not much we can do to PREVENT her gut from spitting out these bugs. We could maybe stop the klebsiella by killing it back with nonstop antibiotics, but we would put her at huge risk for a different bug to come roaring in and do the same damage. One of my main concerns is that there is a “hole” or leak/tear somewhere in kendall’s intestines that are allowing her body to leak bacteria out into her bloodstream at a faster rate than the average person, even the average person on TPN. And her doctors told me truthfully, there likely is. Any one of us could be walking around with tears in our intestinal mucosa that allow bugs to periodically translocate. But since most of us don’t have plastic residing in our heart to attach to, we don’t get deathly ill from it.  So kendall’s issues are likely a multi-pronged issue. She likely does have a VERY thin/weak intestinal wall from years of it’s “dysfunction”. Due to the way her body doesn’t always move food/formula though, it allows some “pooling” of lots of bacteria to occur. And lastly, when your gut isn’t healthy, your immune system isn’t healthy. So she has just pretty much become this perfect little storm of “sepsis” on a near constant basis.

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I think the biggest take-away from our meeting yesterday is that her team is committed to helping ME learn to interpret Kendall’s early signs of infection better. We KNOW she is going to spill some bacteria out. And her body HAS been showing us, albeit in ways that normally wouldn’t remotely raise a doctor’s eyebrows in the least, that it is fighting against the bugs, for a while before her eventual “crash” occurs. We may be admitting Kendall to the PICU quite often over the next few months for “tune-ups” or “rule-outs”. Traditionally, we have tried to handle some of Kendall’s little “episodes” at home, and clearly her body is showing us that it no longer has a tolerance for that. Now that is not to say that we can’t get her BACK to a good baseline, and of course that is everyone’s hope and goal – but in the meantime, we are going to need to baby her for a while in hopes that we prevent the overwhelming sepsis from occurring. Once we can get her stronger and out of this infection cycle, we will be working towards REALLY pushing her gut to tolerate enough fluids that we can look to get the line out. There isn’t a whole lot of optimism that it would be out once and for all – but everyone agrees that if we can boost her nutrition to an acceptable level, we can allow her to limp along for a while without a line. And just try to stretch out the times where she can go without plastic (and therefore life-threatening infections) in her body.

Will this all work? We don’t know. But again – we have HOPE that we are doing enough to support her body with a few new meds/better fluid support, and we her family have FAITH in a God who can move mountains and who can certainly move some little intestines.

So I am leaving this hospital a different person.  I’m leaving with a different baby. We are leaving in a very different place. Circumstances and things we’ve seen and lived through have changed us.  I used to be naive about just how “cyanotic” one could be and still be alive. I used to worry about my child’s oxygen saturations sitting in the low 90’s. i’ve now realized that sometimes you are happy with the 70’s. I used to not have to worry about things like fluid overload and kidney failure and organ perfusion.  i had a sick kid, a medically complex one even, but I didn’t have a SICK kid

And while I believe that the fighter that she is will emerge from this place and be stronger than ever – it is going to be a long road of recovery. it will continue to be two steps forward, one step back.  it will require that all the worrying and and lab-reading and micro-management I already do for Kendall gets kicked up a notch. It will likely require a few more disruptions to family plans and “normal” life. It will have some scary “is she getting really sick or only kind of sick” moments. 

But i refuse to give in to those fears, those dark places that threaten to pull me down.  I HAVE to believe and be strong for Kendall, for my family. i HAVE to place my fears in the hands of God and turn them into FAITH that the big picture is already in place. I choose to believe that there is a bigger story at play here than just my little world. The messages and cards I have received from so many of you on facebook, or in the mail – they tell me that this is true. Kendall is reaching people I could never have hoped to reach – simply by putting a smile on her face every morning. If she can do that, I can do that.

So that is what we will do. We will keep on keepin’ on.
Today has been one nonstop merry go round of discharge planners, doctors, nurse practitioners, nurses, trips to the car – I’m dizzy. Everyone is VERY on top of every little detail for going home this time because i think EVERYONE understands the stakes if a mistake is made. Kendall has two nursing agencies, five pharmacies, two therapy providers and two DME (provide medical equipment and supplies) that need orders sent to them, double checked, confirmation of delivery given.

At the end of the day though, things should be set for Kendall to finally go HOME. It is so surreal to even say those words because it has turned into Groundhog Day up here where we just keep doing the same things in the same space over and over and over again.  But sure enough, at some point late tomorrow morning, Kendall’s last dose of medication will finish, and we will unhook her from all her monitors, and we will settle her into her chair and we will walk out the doors of West 5 PICU. We will get in the elevators and go down to the skywalk and go out into the parking garage where Kendall will breathe fresh outdoor air for the first time in nearly a month. I will gingerly settle her into her carseat, and pack blankets around her for support since she’s still a little wobbly and her seat is a little less supportive than she probably needs. We will put her onto our home monitor and I will load the rest of our crap months worth of stuff into our car and we will finally finally finally be headed

HOME.

such a magical word. 

i am counting things down already. Only one more night of unrolling my mat on the boxes of bliss. only one more shower in the cramped little no-water-pressure shower in the family room. Only one more super ridiculously overpriced coffee, Only one more night hearing the reassuring, constant, steady-toned beep-beep-beep of Kendall’s heartbeat nonstop.  And yet – it’s only one more night of the “safety” of the big towers with all their medical monitors and devices. One more night of having our very own pharmacy steps away, with all the magical medicines that will keep my baby safe and alive if she tries to pull sassy stuff. One more night knowing her awesome team of doctors is just down the hall in case we need ANY little thing.  One more night of my big ipad on the wall revealing the intricacies of my baby’s cellular information via labwork and vitals in cute little graphs and charts right at my fingertips. It will be both wonderful and hard to leave this place this time.

I hope that all of these changes have made me a better person. i hope that i have more compassion, more patience, more appreciation of all the wonderful amazing “little” things that make my life worth living. i hope i hug all my babies more often, tighter, longer now. I hope I remember to look in their eyes and tell them all how amazing they are. i hope I dont let the sleepless nights and the burden of being Kendall’s doctor/nurse/advocate make me grumpy or withdrawn or a not-fun person to be around.  I hope I remember to appreciate how awesome it is to stand outside and breathe in fresh air.  I hope.

Thank you all so very very much for your prayers and love and support.  I feel like a broken record saying that but i seriously – i’’m at a loss for words to even BEGIN to thank you all. YOU (and your prayers and our God) are the reason we survived this month. My mommy and daddy who were here every single possible time they COULD be here, holding me up, feeding me food, letting me rant and rave and rejoicing with me when those numbers would improve or she’d squeeze our hands or she started sitting up….My friends who sent food and cards and meals to my house and love to my heart….Strangers who have decided to take our family under their wings and send gift cards and cards of encouragement….

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But most of all, thank you to my husband. my best friend, life partner, baby daddy. He has been an absolute rock for our entire family this past month. He has just been nothing short of amazing. I can’t even put it itno words without breaking down in tears. He has driven hundreds of miles back and forth. He has made plans to get the other girls from point A to point B and back again. He has dealt with school starting and dance starting and basically anything that would be an added stress to my life right now. He has sat nights at the hospital so I could see my big girls and he has learned how to navigate PICU machinery and he has painted his little girls toenails into minions as she lay paralyzed and intubated. he has held back his own tears so that mine could come rushing out. He has watched his baby girl being worked on when she was scary shades of blue and doctors were nervously filling our room because I could not bear to watch but needed to know what was going on. He has juggled work and home and hospital and girls and is somehow still coherent. If there is an unsung hero out of all of this – it is him. Please continue to keep him in your thoughts and prayers too – for his continued strength.

I’m not sure where or how to end this one. We are leaving the hospital and ending one leg of this long journey – and yet it seems like maybe the real journey is just beginning.

Whatever the case – we keep on keepin’ on.

 

terra.

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.

helping.

When we are in the hospital, life is turned upside down. If you’ve ever been there, you know what I’m talking about. If you have not, you think you can imagine the craziness, but I would just about guarantee it’s even crazier than you can imagine.

But many of you do know, and the rest of you TRY to imagine. When we are inpatient, I am so very often asked “what can I do to help? what do you need?” People tell me they wish they could help but they are far away or don’t know what to do. And usually, people do find ways that may seem small but are actually SO huge to our family of things that help. Gas cards, grocery store cards, dropping off dinners once we are home, loading my front porch with toilet paper, driving my girls to dance – all of these things  and more – THAT is how we survive most hospitalizations. The trips back and forth to home from our hospital 3 hours one way eat through our gas budget like I can’t even explain.

This time is different though. What I NEED is just to have my baby wake up and be back to the Kendall who I was watching movies with just a few days ago. I NEED to hear her voice again. I NEED to have my family back together under the same roof. I just need her to wake all the up and be all the way ok and be here with me. I need to forget the horror of Friday night and I need to lose the mental images of her turning blue that are burned into my mind and I need to be done hearing the bad alarms.

I need a good long hard cry. I need four weeks straight of comatose sleep. I need my adrenal glands to have a break from their constant pumping of adrenaline throughout my body, making me jump at every little noise or beep or person moving too fast in my peripheral vision. I need to go on vacation like we had planned with my WHOLE family all together and i need a sushi date night with my amazing husband.

But these aren’t the answers to the questions so many of you are asking. Because what you really mean when you ask me what I need is “how can I help”?  And honestly sometimes I don’t know how to answer because I just don’t even know where to start. It is so so so hard to feel like i am “asking” for help. Because really, that is not what this is about.  It is about trying to help you all understand where we are at. This post is purely for those who have been asking how they can help.  It is very hard to disseminate information to a large network sometimes. It was part of the reason we created the Hope For Kendall page – because there were so many people who only wanted to be my facebook friend to know how Kendall was doing, and NOT because they wanted to hear about my coffee addictions or how a policeman stole my kitty off my front porch. We are pretty involved in our church, and then my parents’ church have been huge supporters of the Kendall Krew, and all my siblings spread around the country/world and THEIR churches, not to mention my friends, their churches…..etc.  As you can imagine, it is a pretty large network of people. I am NOT complaining. we only survive because of our amazing and wonderful network/community. I could never hope to repay or even properly thank so many people who have supported our family with their prayers, money, gifts, generosity…

It is so hard to feel like we are constantly going back to that well, and yet, people keep asking.

I said this last time and I’ll say it again now. I think a large part of why people want to help is because inherently as humans, we want to ease suffering. We can’t give every homeless person a home, but we can give $3 to the man on the freeway exit with the sign. There’s so many huge problems in this world, but if we all do a little bit, then big things can happen. You read our updates and you read the pain and you read the good times and you want to be a part of that – and that is SO awesome! We love that you are on this journey with us. Whether all you can offer is prayers or you can solve all our financial worries – every single prayer, every single penny, every single bag of m&m’s or rolls of toilet paper or 12 pack of coke – it is amazing.

We have been so very blessed by so many of you. It has not gone unnoticed or unappreciated. I feel undeserving to even ask for anything else, because really, our NEEDS are met. Kendall is making good progress and is out of the very scary place she’s been at the past few days. My other babies are as happy as I could hope for under the circumstances. We have two working cars that are taking us back and forth with no issues (knock on wood!) I have good friends who bring me non-salmonella containing meals and coke. And even though i did NOT pack any underwear, I had enough money to go to walmart this morning and buy a new pack. (Have I ever told you I overshare sometimes? Well, I do.) I even, in one of my biggest hardest challenges – had an amazing friend (who has another amazing friend) who downloaded my girls’ school shopping lists and got what they needed because chances are VERY good that I will not be able to take them school supply shopping between vacation ending and school starting. These are the things that are important.
So at this point, everything else seems just more of a “want”. A whim, a wish, a frivolity.

I wish that I had extra money to take the girls to build a bear to make a bear for their sissy like they asked. i wish we could go back to school clothes shopping for those special first day of school outfits. I wish I could make it up to them in some way all the craziness they have to endure. I wish their lives were a little more “normal”, even-keeled.

But then again, normal is over-rated.

For those who are really truly wanting to DO something, to try to help ease the craziness that comes with a story like Kendalls – here are a few things that are always needed. Again, please hear me that I am not trying to ask for anything above what we have already been blessed with. But I know it is hard to take away from some of you the ability to help, to be the hands and feet of Jesus to our family. So here are some ideas.

Gas cards. Shell, BP, KwikTrip are the stations closest to both our house and the hospital.

Grocery store gift cards allow us to get snacks for the hospital room and for the big girls for the long trips back and forth. (We have Jewel/Albertsons, Dominicks/Safeway and Meijer by our house, and Pick-N-Save by the hospital)
Restaurant gift cards allow us to go out as a “half-family” when we all get to be together.

For home – once we get there, we usually try to keep everything as “sterile” as the hospital keeps it so she can ease back into building up her own immunities. Lysol spray, bleach wipes,  paper towels, laundry detergent – things like that are always helpful.  If you feel so led to contribute to the Kendall Quinn Medical Fund, deposits can be made to that account name c/o Ben or Terra Atkinson at any BMO Harris Bank branch. Any donations made to the Hope for Kendall Paypal account are used for her care also (hopeforkendall@gmail.com).

But there are so many other ways to help too – besides the most obvious and most amazing, your prayers!
Every time you share a post about Kendall’s story, and invite your friends to like her page, you are helping us add more people to the Kendall Krew – people who will learn about mito and be able to spread the knowledge they are gaining until it is a more known disease process.  Every time you put her on your church prayer list, you are helping storm Heaven for the sake of Kendall. Every time you leave me a message that Kendall’s story has inspired you to do something hard/live better/love stronger/repair relationships – you make this hard time a little bit easier to understand and handle.

Speaking of that – I’d LOVE to make a mural for Kendall’s room, that just has messages of how she’s inspired you on it. I’m going to put a post on Kendall’s FB page asking for your stories so I can start writing them out.

Other things – we are starting a Kendal Krew walking team for the UMDF (our mito disease organization) Energy For Life walk in September. We would love to have 50 walkers on our team! I will also link to that on Kendall’s page.

And the last thing I think is a Dodgeball Tournament coming up VERY soon that Special Spaces Chicagoland is putting on. Through this Dodgeball Tournament, they are hoping to raise funds for a VERY special room makeover for miss Kendall. Her medical equipment and needs make her room very “un-cute”, cluttered, and more closely resembling the supply closet of a hospital than a 4 year old princess loving little girl. This awesome organization has decided to take on the craziness of transforming Kendall’s room from what it is into something fit for a princess! We would love to have the Kendall Krew turn out in full force for that tournament to support their efforts!

Whew.
This post has been interrupted by a coughing/choking/gagging Kendall about 14 times so I am not sure if it is coherent at all. It is my most sincere hope that it has not come out as ungrateful or offensive at all. Please know that it was not written to make anyone feel like they HAVE to do anything – it was written simply for those who have been asking, and for those who are being asked and have no idea how to answer.

our family will survive this because we will all be together. Everything else – frosting on the cake.
We could not do it without your prayers, love and support.

Thank you for being part of our story.

Terra, Ben and the Special K’s.

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