Live the Life You Imagined.

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

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

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

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

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

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

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

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

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

In the words of Marcus Mumford (<3!)

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

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

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

 

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

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

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

Peace out party people~

 

T

Going on a Trip.

I’m going to do this.

I’m going to pack all four of my babies into the car and we will drive down to where it’s warm and where there is sunshine and there are beaches and the ocean.

I am going to lose my mind, multiple times and in multiple ways, but i am going to do this.

 

I need to get Kendall to the ocean. I don’t know why. And the fact that i am so compelled to do this scares me a little. But I need to do this, to prove to me, to prove to her, to prove to i don’t even know who because we have nothing to prove – that she is capable of this. That her “things” do not define her or limit her.

IMG_1598

I don’t have the money for this and the logistics of it are going to be insane. Packing her up for a trip to the hospital for the day for ivig is hard. Packing her up to go somewhere is exhausting. Packing her up for a trip like this is going to suck the last ounce of energy i have.Packing up the IV pumps, all her IV meds and fluids and tpn and extra tubing, the oxygen concentrator and pulse ox and blood pressure machine and all the other meds and supplies that make up Atkinson General Hospital into the car…i am tired just thinking about it.   But i will do it. I will do it for her and i will do it for all my babies and i will do it for me.

I need to watch her splash in those waves and build sand castles with her sisters and be a regular little kid. Because sometimes your friends’ kids get cancer and sometimes good moms die way too young and sometimes really bad things happen and they sneak up on you and you can’t sit around and wait for some perfect time or perfect life to finally feel happy – you have to go out and MAKE your happiness come, find your happiness.

 

Find it in the laughter coming from the back seat or the way your babies sing along to all your favorite songs in the car because it’s all they’ve ever heard and find it in the simple joys of just being able to sit down at the table together and enjoy a meal. Find happiness in the way it feels to hug and hold your kids tight – no matter what else they’ve done or said that day.

Find happiness.

My happiness is here, and my happiness will be even more when i see all of my girls enjoying the fruits of the hard work it’s going to be to get to the beach.

I have been walking through the dark stretch of highway that your life detours onto when your baby gets sick sick. Like organs failing, life support keeping the barest definition of life pumping through veins, are they gonna make it kind of sick. And it is bringing so many feelings flooding back. I am glad to be able to offer some support – because really how do you support someone through this? You can’t. There are no magic words or magic pills you can give someone who is standing bedside holding their babies lifeless little puffy hand to make it “better”. All you can do is say “you will be ok, she will be ok” – and then pray with every ounce of strength and faith you possess that it’s true. It brings back all those memories my brain has filed away of the hours laying on the cold floor of the ICU family area, my own bile dripping out of my mouth and onto the floor but not caring because every single cell of my body was screaming for her to come back to me, for that damn code alarm to stop blaring, for people to stop yelling orders out of her room to the people waiting outside the room with meds and machines and things to help keep my baby alive. Those feelings well up as this heave of sobs and tears i have to stifle back down because we are not there, that was then and this is now and now, today, I have my baby girl here. Running around this morning packing random stuff into her princess purse to take to school because of course we need to take three easy clip dresses for polly pocket Elsa and yogurt and a special spoon and two hairbands and five broken crayons to that place we are supposed to be sitting and learning!!!
And I look at her and I am amazed at her strength and resilience. And this is how i know what “amazing” really means. This is how i know what life really means, what it’s all about.

IMG_1978

And that’s how i know this trip will all work out somehow. I will get them all to the beach and i will soak up every single little moment of that gloriousness.
And i will hug them all so tight and will tell them all how amazing they are.

That’s about all i have to say about that today. The tears are too close to the surface and i have too much crap to do to sit here crying.
Just – don’t take your life for granted, ok? Find something – no matter how small you have to start with – and focus on how grateful you are for that thing, how happy that one thing can make you. Don’t hold grudges. Tell someone that you love them or that you’re sorry or that you forgive them even if the apology hasn’t come and hug your babies no matter how frustrated you are right now.
This life, it’s so awesome and you never know what direction it’s going to head in.

Pack the car up and crank the music and drive to your happy place.

 

Be happy.

 

20150506_172327597_iOS

 

Peace out party people~

T

Endure.

So I figured I should get at least one blog post up in October.

Here you go.

IMG_8584

I’m not entirely sure why today is the day I have been spurred to finally put pen to paper (or fingers to keyboard as it were). There have been many other days where my emotional state led me to believe that blogging and purging my feelings would make me feel better.  (Did I just say blog and purge? Like this is some kind of word-bulimia? Yes. I did. I’m copyrighting that.  Wordimia.)
Someday I am sure that the entire story of what I have been enduring the last few months (years) will be told. In fact, in the book I have been encouraged to write but have yet to start will include all of that story.
To say that my personal fortitude has been tested would be an understatement.

But today, for some reason, the dam holding back my feelings is near breaking. And what broke it was a phone call from my dad who is with my mom at my aunt’s house as she endures her final days on earth, surrounded by the love of family and friends. She has fought fiercely against aggressive ovarian cancer. But her body is wearing out. Her spirit sure isn’t. As my dad told me of her wishes to be buried in her pajamas and fuzzy slippers, I laughed even as the tears rolled down my face, knowing that that is EXACTLY what I would picture her being buried in. Of course she’d want to go to heaven wearing what she felt most at home in! And i realized that even though the death of a loved one is so hard for those they leave behind, the glory that those who are going on are passing into will be amazing. But oh my heart aches for those she will be leaving behind her. Her laugh is one of those amazing infectious laughs that they should make soundtracks out of because if you hear it you just cannot help but laugh yourself, even if you have no idea what is so funny! She loves like a hurricane, it hits everyone around her all at once and she is just one of the most amazing women i have had the joy of being surrounded by in my life.

And so…I decided today was the day I was going to stop being dictated by my circumstances. I am stressed and I am sad and I am sore and I am a hundred different feelings and things but at the top of that list is this:

 

 

 

I AM ALIVE.

 

So I will LIVE in the best way I know how. I will embrace the stuff of life, the good, the bad, the painful, the beautiful, the hard, the awesome.

I will enjoy the food, and I will breathe the air and I will feel the feelings. I will love more fiercely and laugh more often.

And I want to encourage you to do the same.

Let go of the small petty stuff. Let go of some of the big petty stuff too.

I try so hard to keep the thousand balls in my life juggling in the air the best way I know how but you know what? Sometimes I’m just going to drop some. And that’s ok. I’ll pick them all back up in the morning and start over.

This life, it’s a gift. It’s not guaranteed or promised.

While I was on the phone with my dad this morning, there were helicopters hovering overhead as they had been for a few hours. There was a shooting, some kind of murder/suicide thing at an office park less than 2 miles from my house. Life is not a guarantee. But it sure is awesome while it’s here.

 

This is what is on my mind today, and has been kind of brewing for a while.
I’m not sure what else I have to say about it all right now so i’ll wrap this one up.

I have a lot of other things I need and want to blog about. Some are silly – like my new plannner i’m working with or the awesome table makeover i did at the beginning of summer and forgot to blog about. Some are probably more serious but those are the hard ones to get out. Things with kendall are trucking along. She’s not able to attend school full time and that is a hard, but not shocking, realization for me to come to. She was officially diagnosed with ADHD and we are learning to try to handle that better in the midst of “mito crashes”. If you’re wondering how an energy deficient kid looks with ADHD, imagine a gremlin high on weed. It’s interesting. She’s also probably going to be put into a special ed class at school instead of mainstreaming. I don’t even know which way to fight for her on that – because she is struggling SO hard to keep up, and yet she starts behind the 8-ball with all that it takes just to get out of bed and into the building every day. I don’t know. I don’t know where that line is between advocating FOR her and protecting her in the best way I know how. It wears me out and it stresses me out and it’s added to the stress of Karissa and her school struggles for similar reasons and most of the time I just feel like this huge failure at most of my life and yet….I’m living it. I’m here. I’m putting one foot in front of the other and keepin on.

So that’s that.

I’ve missed blogging. Now that I’ve begun my wordimia i am sure there will be much more to follow.

Thanks for those of you who stick around and visit faithfully, hoping i’ve made a new post. Here you go. This one’s for you.

I hope it’s been a good monday for all of you.

I hope you take a few deep breaths of outside air and realize how amazing it is that your lungs work and your brain works and all of you just WORKS. Don’t take it for granted.

Keep on keepin on, party people.

 

<3,

 

me.

September the First.

I don’t know why i’m always so shocked to see how long it’s been since I last posted.

But still…. June?

September will be better,  I promise. I already have lots of fun mildly eye-roll-inducing SUPER INTERESTING posts lined up.

And even a few vlogs! (speaking of, I have a burning question regarding vlog vs blog on a specific topic on the Terra Talking Facebook Page – go over there, like it if you already don’t, and help decide the fate of my awesome story!!)

So since most of you come here to read about Kendall, and how she’s doing, I’ll start the month off with that.

Overall, she’s doing good. Other than the crazy bug bite from hell that turned into an abcess/cellulitis that required hospitalization and ten days of IV antibiotics and a week of IV stress dose steroids, she’s been doing a good job holding her own.2SS_6375

But oh…how I wish you could see what I mean when i say she is exhausted. How much my heart breaks for this little girl who shoulders up her backpack, full of two pumps and two bags of fluids the last couple weeks, and wears it on the hot sticky days like a champ, never complaining, never whining about it, just maneuvering around with it because this is her life and this is what she knows how to do: LIVE.

She loves going to school. Absolutely ADORES it! It wears her out so badly (and yes, I get that all first graders are tired and adjusting to a new schedule – I was prepared for some tiredness but this is a whole other level of exhaustion for Kendall!), but she puts on that crazy smile of hers and she keeps her chin up and she does her absolute best to pay attention to the teacher and to keep up with the class and she’s trying so hard. i’m so proud of her. She’s amazing.

This infection she had – well, it hit me almost as hard as it hit her. She had JUST gotten IVIG, the magical unicorn tears I have held up for the past two years as being the reason she has stayed so healthy.  And as a quick primer on IVIG for those who are newer around here – it stands for IntraVenous ImmunoGlobulin.  Your body’s “immune system” is complex and multi-faceted but for space and time constraints i’ll boil it down to this: your blood has three main components of immunoglobulin which are technically your “fighters” against bacteria, viruses, fungi, etc. You have IgA, IgM and IgG. IgG is the main one you need in order to have an immune system as most people consider it.  Contrary to popular belief, “picking up every cold under the sun” is not actually a sign of a weak immune system. It’s a sign of a good one – your fighters kick in! You get the fever (WHICH IS A GOOD THING!!! It means your body is fighting invaders!), you get a runny nose, etc etc – and you fight off the infection thanks to your IgG.

Then we have Kendall. She technically HAS IgG in her blood, and sometimes she even has a really good amount of it – but it’s like having an army of soldiers who are all narcoleptic and/or otherwise incapacitated. Her own native immune system doesn’t recognize invaders until it’s WAY too late. Even with the IgG that we infuse into her bloodstream every few weeks, her immune system is extremely lazy. So what happened a few weeks ago is that when she got a bug bite on her little booty cheek, her body didn’t send the soldiers to help control the spread of the bite reaction as is typical. Hers went from “regular mosquito bite” to “holy crap what IS THAT THING!?!?!?!!?” in about 72 hours. And we were running IV benadryl to try to stop it from getting worse and it was just getting out of our control almost before our eyes.

And i was glad that we are at a place with her team that when I send an email (with a picture) and say  “ummmmmm…..help me?”, they jumped into action. I didn’t have to spell my fears out for her doc, he knew what I was thinking. This is the kind of stuff that takes Kendall down hard. Maybe not right then, but if we had not nipped that in the bud, it would have easily been systemic within the week. Septic, most likely. A blood stream infection that would wreak havoc on her organs and little body – all from a bug bite.

Now of course we have no way of knowing for sure – and no one really wants to try to find out. But the fact of the matter remains that Kendall looks amazing on the outside, and yet her body fights a raging war on the inside, every single day.  I am SO thankful for our new nurses who are very on top of learning all of Kendall’s “Kendallisms” and helping me manage the delicate balance of meds/fluids/vitals that keep her able to go to school with a smile on her face and sit in that little desk like the other kids in her class and  live her life the best way she knows how.

A bug bite. A little regular probably mosquito bite. And it was as if her body didn’t even recognize that it was fighting what was quickly becoming a massive infection. I’d be lying if i told you it doesn’t scare me a little bit for this winter.  I have NEVER wanted to live my life, or hers, keeping her away from living her life. I’ve never tried to keep her quarantined from things (although I like to think i make decisions in her best interest as far as when to go and when to stay home). I don’t make it a huge deal that my kid has basically no functional immune system. It’s just not how I’ve ever wanted to treat her or live. But my gosh…to see what just happened, it makes me stop and think. And overthink probably….

So that’s where she’s at. With currently a very minimally functioning immune system, but off the antibiotics and steroids for now (YAY!!!! Those drugs are brutal on her and I hate when she needs them, even though I am SO very grateful for them.)
We are still going up to Milwaukee once a week for iron infusions – I think we only have three more left though! After that course is done, we will re-run the labs and see if we have done enough boosting to let her coast for a while. My impression is that we have definitely helped her feel TONS better, and I don’t see the massive crash after a few days that we were at the beginning of the infusions. But I do wonder how long that will “stick” once we stop the infusions.

School is going…..well…..it’s going! It is becoming more obvious and apparent that there are some MAJOR lags in Kendall’s ability to keep up with the class – and while that is in part due to her needing to miss one day each week, it is in larger part due to the fact that she has ALWAYS had struggles with actually learning and retaining the information taught in class. That isn’t to say that she isn’t smart as a whip – cause she is! She can throw around medical terminology correctly and tell you about feeding pumps and IV pumps and discuss IV medications better than a lot of medical students probably. Yet – she can’t recall the sounds each letter makes and spell a word off the top of her head from her word wall list. She can’t tell you how to sort a group of like words. It is hard to put it into words exactly, what we see and observe, all I know is – she is struggling and I refuse to let her continue to struggle without some major help.
So next Tuesday we will be shlepping BACK up to milwaukee for all day neuropsych testing to determine what, if any, learning disabilities Kendall has that we can identify and hopefully help address. It isn’t like this news comes as a shock. Her doctor actually put in the referral for this testing LAST YEAR, but insurance has finally approved it and the clinic finally has an opening. While i know this will be yet another “thing” to add to the diagnosis pile, I am hopeful that at least this one we can attack. This time we can maybe help solve a problem instead of just minimizing damage.
This post is all over the place and I feel like there’s so much more I could say about where Kendall is at….or my feelings on the matter. But I’m sure they will come out in bits and pieces in other posts over the next month.

Thanks for sticking around if you’re still here. I hope to have lots more to talk about over the next few weeks and it’s so nice to know you’re listening!

Have a beautiful evening, party people. See you on the flip side…

Terra.

The Recovery.

The Jetlag if you will.

The inevitable fallout that happens after spending a few weeks in the hospital.

Fallout for Kendall, fallout for me, fallout for all of us. We need to re-enter “normal life”, but normal life often involves an increase in the complexity or care of Kendall and her needs, which means there’s a lot less actual time in which to pretend like we are back to normal.

I don’t usually like to focus on the “hard” part of our lives. I hate feeling like i’m complaining, because in actuality, i try really hard not to.  I try to not get mired down in the “woe is me” or “woe is us” dumps.  I try to not play the comparison game, and I try to not ever take a minute of my “hard” life for granted because I know there are so many who would gladly give up nights of sleep and take the boxes of bliss back if it meant they got to hold their baby’s hand one more time. This is the reality of the life I live – knowing that as hard as life is many days, as many things as i WANT to whine and complain about – I know at the end of the day, that the fact that we are all still HERE and still alive is the biggest blessing of all. This is not a lesson I take lightly.

But even knowing that – sometimes it is still hard to walk in these shoes.
And today, for some reason, I just had a lot that I wanted to get off my chest.

It was hot today. A beautiful preview of summer to come.
And of course, Kendall couldn’t handle it.
And really, I hate overusing that term “she crashed”.  If I’m honest, I hate seeing other people use and abuse that term. I know that “crashes” look different for each person, and that what I’ve seen and witnessed in my child is probably far more than most people will ever have to watch their child endure during a “crash”. (I told you – i’m just getting it all out here today!) Anyways – while she didn’t have what I would consider a “crash”, she definitely had a horrible day.  Which led to her nurse having a bad day, and then making me feel like a horrible parent, and left me feeling helpless and angry and sad all at once. And maybe this was because I was already trying to deal with my own emotional fallout and so the timing of everything was just really crappy.

But i had a few times today where I just wanted to bury my head in my arms and just cry. For no good reason really – just blogrecovery1let the tears flow because it seemed like the right thing to do. (Have i ever mentioned how much i REALLY hate to cry?? It’s just not cute. It serves no purpose except making my eyes puffy and my sinuses swollen.)
I was sad to see Kendall wanting SO BADLY to just be a normal kid and go to school.

I mean, my gosh, today was her last day of KINDERGARTEN. I have a big first grader now.  She did it! She learned most of her letters and all of her numbers and she can count to 100 (almost – she gets stuck on 60 and kind of loops back around to 40’s and then throws a few teens back in but you can get her on track and she can do it!) and she knows her colors and most of her shapes and wow….she actually learned to SIT and to not yell at her teacher and to not throw markers at other kids and in spite of having TWO horrible blood infections, a broken wrist, and countless little viral things this year – she did it. I am SO so so proud of her. I am so glad our school doesn’t do the graduation thing for kindergarten because i would have just been a hot sobbing mess who needed the Neti pot for the next three days.

But my baby had to go in spite of the heat of the day which just literally zaps her of energy, and she is now carrying two pumps and two bags of fluids in her little backpack and she’s running antibiotics that she is technically allergic to and which makes her feel like absolute shi-caca. And yes it would be easier to just snap those pumps to an IV pole and make her wear her oxygen and make her sit in her chair which are all things she SHOULD be doing but you cannot tell this kid differently and even though i know I am the parent i just wanted her to have this one last day of “normal”. You know? Maybe you don’t. Maybe you don’t know the absolutely heartbreaking crossroads I battle at every day – between wanting to give Kendall the wings to fly and trying to tether her to me for safety.  I know she has challenges. I know she would likely have a smoother course if I made her be “that medical kid”. I’ve seen this happen a lot in the special needs community – kiddos tied to IV poles when a backpack will work just as well, becoming reliant on their chairs, spending so much time in the hospital because things aren’t just perfect. And while I don’t know each individual situation, I know mine. And I know Kendall’s. And I know I will daily strive to find that perfect balance between overmedicalizing her, and keeping her safe from her own stubborn will to do whatever she sets her mind to,  mito and other health issues be damned.
And this is what drains me.  Letting her fly while keeping her tethered. Taming a wild beautiful horse.
And while I am writing these thoughts, a song comes on that brings a smile to my face and reminds me to just breathe and take it day by day.

There’s more than one answer to these questions pointing me in a crooked line,

And the less I seek my source for some definitive, closer I am to fine.

 

So I guess that’s that.
I know it will be a tough summer with the heat. It always is. It is really fricking hard to keep her cooped up in the air con while she watches her sisters and i going out to do fun things.  And in another slap to the face, she asked if she could have a bigger bike. I told her she had kaylen’s old bike and it was her size. And then I realized – she cannot ride a regular bike. She does not have the balance or the coordination to sit on the small seat and balance herself and her backpack and make her legs propel the pedals forward and keep her eyes on the road ahead. She does really awesome walking around and looking mostly normal but do you know how hard that is for her? How much it wears her out to go from point A to point B? You probably don’t. Because she keeps it together in front of most people. And because she holds it together, I hold it together. But her sisters and I see the fallout. We deal with the fallout of a hurting Kendall, lashing out at us because her legs hurt and she’s exhausted (she really doesn’t lash out at daddy ever….)
And I was just sad that I realized we have to figure out a way to get her one of those special adaptive bikes. It will be all she can do right now – and it’s all she wants to do is ride bikes with her sisters on beautiful nights like tonight, when the humidity isn’t completely zapping her and she can tolerate being outside and looking normal and doing normal things.  I’m not trying to make this all seem like some huge whinefest. It is just the bare bones truth of how things are right now.

Hard.

But we do hard things around here. And we figure out a way to keep on keepin on in spite of the hard things.
So we will get through this day, and the sun will rise again in the morning and things will look different. Maybe still hard, maybe a little better. But each day is new and always full of the opportunity for good things.

This is how we survive. This is how we recover. We roll with the punches, even though a few of them land right in the kisser, and a few of them are stinging blows.  (Should I put more song lyrics here? Because it fits so perfectly!!! I have used them before. They will soon be tattooed on my body even!)

But the fighter still remains.

So that’s how recovery is going.

Kendall is recovering. Her body is still weak from the infection and from the effects of the super strong antibiotics she is on every six hours, and they run for two hours each time. But her fighting spirit is strong as ever. As for me, I am getting there. No it wasn’t as emotionally taxing as some of them have been. And yet, how do you measure that? I feel like I hardly had time to sit and breathe after returning from Mexico, when my mother’s day was thrown into upheaval by an ambulance ride and then a 3 am drive up to milwaukee smacking myself so hard in the face to keep myself awake that I broke blood vessels in my cheeks.  And really things never calmed down from there. Two weeks of the chaos of our lives being thrown into a blender.  Coming home exhausted with an exhausted child and three other exhausted babies who just have to make it through the last few days of school. And then we can all sleep, said the mama.

So that’s all I wanted to get out tonight.  That some days are really rough and it doesn’t mean it will always be rough but it’s also not always as easy as I work so hard to make it look.  Home doesn’t always mean things are smooth sailing, but it means we are working on it.

If you’ve managed to read through this drivel this far, you rock. And I thank you for hanging in there with me through this stage of the journey. The sun will come out tomorrow, right? (I am totally busting out in my best Annie voice right now!)

Keep on Keepin On, party people.

Love,

T.

 

Cheers.

Not the drink kind.

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

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

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

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

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

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

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

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

I’ll update again once I know more!

Keep on Keepin On~

Terra

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.

20130807_150027000_iOS_thumb.jpg

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.

Things you Learn.

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

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

Anyways –

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

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

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

So …

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

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

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

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

Terra.

Yo-Yo-YO!

So – to totally go from that to this….

Here is a crazy unedited video of me and the babies reviewing the pina coca yogurt drinks i found at the mexican grocery store.

Just in case you were also in the market for pina coca yogurt drinks.

And while you’re watching it – go ahead and subscribe. With how easy it is now to do vlogs from my laptop, i’m sure i’ll be adding more awesomeness just like this much more regularly!

The girls love feedback on their videos so let us know what you thought!

Hope you all have a wonderful Friday!

<3~

Terra

And K3 and K4

#showhope

Our church has challenged us to show our Hope this holiday season.

If you’ve hung around these parts for any time at all – you know that Hope is kind of a thing here. Some days it’s the only thing.

I could post so many pictures showing what hope means to me.

But for some reason – this is the one that sticks out the most to me.

20130727_092216000_iOS

Laying on that bed, among all those machines and tubes and wires, my baby girl laid fighting for life.
When I took this picture, we had just been given the first bit of “hope” that we had had in over 8 hours.

For those 8 hours prior, she had been essentially in a non-stop “code”. The machines and the medicines were failing. Her body, the shell she uses on this earth, was failing. She was in kidney failure,  liver failure, heart failure, respiratory failure and her brain function was decreasing steadily. For 8 hours a team of many doctors and nurses worked to stabilize her. For 8 hours I could not bring myself to go near her room because the sounds and yells and alarms were overwhelming me. For almost that entire 8 hours, I laid curled up in a ball on the cold floor in the hallway near the windows, begging God to give me back my baby…PLEADING with Him to take me instead of her.

And then….
a glimmer of hope.

Her heart finally got a rhythm. The medicines gained ground against the battle they had been losing. The machines were able to push air into and suck it back out of her lungs. Her brain function stabilized. At a low rate but it stopped going down. A tiny little drop of pee appeared in the tubing. One drop. We all cried happily at that one little drop right there in the tubing. It was our hope.

We took it minute by minute for that entire first day after this crash. And then it was hour by hour. And day by day. For almost three weeks.

And God was faithful and mighty – and He did, in His way that is higher than ours, give our girl back to us.
Laying on that floor, as I begged with every ounce of my soul – I heard Him tell me clearly that Kendall had a huge story to tell, and that I had to tell it.

That is why I post about this often gut-wrenching journey. That is why I continue to share on her facebook page – I know that Kendall’s story – of Hope and Triumph and Joy – it must be told.

when it seems like all hope is lost – hold out for that one drop. hold out for one more minute. one more hour. one more day.

“Hope is a good thing”.

~Andy Dufresne, The Shawshank Redemption

 

So maybe, really, my picture of hope should look like this.

20130807_150027000_iOS

Or like this.

20131019_163034815_iOS

Or like this.

20140410_140956742_iOS

 

But I know what hope is. And I know who the Giver of all Hope is.
And it is because of Him, that we continue to hope…

for good days.

for cures.

for the knowledge of what life is really all about.

Because of Him –

we will keep on keepin on.

 

#SanctuaryShowHope

 

T.

Related Posts Plugin for WordPress, Blogger...