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.

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

 

T.

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

Going.

So I’ m not really sure where or how to begin this post…

I know it’s been forever.

I’ve been going through some stuff. Some hard stuff. Stuff that i wanted to come and post about here but the thing is, it’s a story that is not solely my own, so i didn’t feel like I could tell it.  And I’m still not sure i can totally fully tell it – but i have missed my outlet here. I’ve missed being able to process the emotions of what i’m dealing with via my writing, and the connection I get when I share things with you guys. So i’m going to attempt to just start where i’m at and go from there.
First – we are all doing ok from a health standpoint. Kendall is doing as well as I could ever hope for, we managed to escape massive sickness this crazy long winter (even though i’m still trying to recover from a brutal 3 week bout with bronchitis, or at least that’s what i diagnosed myself with!), and overall, yeah. we are cruising along in that aspect.  But to tell you the truth, I am doing anything but cruising.

I am keeping on because it’s all I know how to do. But I’m not sure i’m doing it really well. I am not really wanting to dwell a ton on it with this post because like I said, it’s not just a one-sided thing. My marriage is not in a good place. I don’t really know what the next few months might bring. I don’t want to create more questions by being vague about it, but i don’t want to get into the details right now. Know that i know it is never just one thing or one person that kills a marriage. It is a series of tiny little things, silly little trivialities usually, that left unchecked create massive cracks in the stability of the foundation a marriage has to be built upon. And without communication about those things,it can quickly being crumbling. So this crumbling hurts. And being who i am, I try my best to patch up the crumbling places and keep a game face on and move forward. It’s the best way I know how right now.
But going through this – wow. It has caused me to build an inner strength, or rather to rely on an inner Strength that I didn’t know was there.  It has caused me to dig pretty deep within myself to try to learn from the hurt instead of react to it, to really analyze who i am, and what i am doing with my life, to look at myself in a whole new light. It’s been a journey and it will continue to be a journey and i realized that at the end of the day, that’s what this blog is. A chronicle of my journey – the good, bad and ugly.   And while I’d rather on some level continue to pretend like things are sailing along smoothly and fabulously – the truth of the matter is that they aren’t. And that’s ok. Bad things happen. And the best you can do is learn to not let the bad things control your life. 
And for all I know, the ending of this story may not be all bad. It feels bad and painful right now – for both of us – but we’ve been through a lot before and come out ok on the other side….and if i believe in one thing – it’s that Hope is Always a Good Thing.

And that’s about all I have to say about that for right now.

 

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But what I do want to talk about is that I am going on a trip this coming weekend. cunjw_phototour125
I will be flying to Cancun Mexico. By myself. For 5 days.

I am all kinds of excited about this for reasons that I can hardly put into words.

I need this solitude. I need the beach and the salt water of the ocean and the warmth of the sun.

I need to be in a place different than the one I am in every day and I need to have a few days where the only persons needs i need to worry about are my own. And to even say that makes me feel so selfish. It is all i’ve known for so long – taking care of everyone around me. And even though my girls are amazingly strong and independent little humans, they still need so much from me. It is hard to constantly give and give and give and never have anything to refill the giver.  I know so many strong women in my life who know this concept well and I wish on some level that I could take you all with me. I do not take the opportunity for this trip lightly at all. It is a gift, and I will treat it accordingly.  But oh how excited I am!

I have only ever been to Mexico for missions trips – to areas of the country that aren’t touristy and aren’t fueled by drug money and usually aren’t “americanized” in any way.  And in some way, that’s the Mexico I long to see. I will be going on one day trip to some of the ancient Mayan ruins, and to see the “jungle” down the coast a little ways. (And feel free right now to comment down below if you have ANY kind of input on tours/things I should do/things i should avoid/etc – I will take any and all advice!!)

But anyways – I am very excited about my trip. A little nervous….I mean, it’s not every day that you take a trip to a different country on your own.  Eat all your meals on your own. Decide to go zip lining through the jungle or cliff diving on your own.  Yet….this is what I truly long for. Finding within myself the ability to be alone and content with my own self. Hear my own inner voice. Be at peace in a place of solitude and just listen.

So this week ahead will be filled with making sure things are set for Kendall’s schedule, and praying that she continues to behave herself and do so well health wise. Making sure her supplies and meds are all set and that nursing coverage is in place as much as possible and that the other three will be able to get to and from their various activities and that everything runs as smoothly as possible in my absence.  It has been so long since i’ve gone on “vacation” like this….i literally cannot even tell you how excited I am! I had to get a passport and everything.

I’ve never had a passport before. It is totally empty. I cannot wait to see that first stamp in it and I hope that someday it gets other ones in it too.

And that’s where I’m at right now.  I’m keepin on. And I will continue to do so. And I will continue to use this space as my place to process through how that looks. I know I want to remember every second of my trip coming up so I hope to be able to share some of that here with you all too.

Some of you have been such amazing supports to me throughout the past few years, and I appreciate every single comment or email or in person hug I have received from you. I need your support and love and prayers more than ever right now. We all do, honestly.
There’s so much more I could say, and maybe it will eventually come out, as I find ways of being better able to talk through things that are hard to say. But right now, I know only to focus on this day, and a few days ahead.

Thank you for sticking around if you still check in here and read this little blog of mine~

Keep on Keepin On….

terra.

(Photo courtesy of the JW marriott Cancun Resort and Spa)

The condiment queen.

If you’ve ever met Kendall in real life, chances are, you’ve seen her live up to her nickname “the Condiment Queen”. And what that means is that rather than actually eating real food, Kendall is mildly obsessed with eating the “condiments” – butter, jelly, syrup, whipped cream (yes she’s basically on the Elf diet).
And what this has to do with anything is that the condiment queen is about to reign supreme.

I hinted last week on Kendall’s page that we had had a VERY encouraging GI appointment in Milwaukee but that I needed to blog the news in order to do it justice.

The back story to why this is such good news:

*sigh as I try to figure out where to back up to in order to capture all of the feelings associated herewith*…..

Ok the back story is too long to fully explain. Basically – three years ago this month, Kendall was miserable. She was constantly sick, needing a ton of oxygen on a daily basis, was making no progress in the daily therapy she was undergoing, and we were at  a complete loss as to how to keep her healthy, get her to grow, stop the intense pain she was in (pain/nausea due to feeds into her jejunem/intestines). At that time her doctors decided to start her on TPN and we began “gut rest”.  The rest is kind of history. Ups, downs, good times, bad times…..but through it all, we have tried to keep a sense of “normalcy” with regard to food. It has never seemed right or normal to me to not have her sit at the table with us for family meals. Not that we are the Cleavers who sit down every night for a fancy meal – but when we are together and are eating, we put her at the table with us and make her a plate of appropriate foods and if she wants to taste/lick/eat a bite or two – great! And if not, no pressure.
Food is such a social thing. So many events in life involve food or are centered around food – and I never wanted her “issues” to be anything that made her stand out or hold her back. Of course we have learned what does or doesn’t work for her (meaning basically we’ve learned that some things cause more pain than they are worth and some things are MUCH easier to suck back out of her gastric tube than others!) And it’s not like Kendall eats a large amount of food by any stretch of the imagination.

But she WILL eat some things. She grazes. A bite or two here, go play, a bite or two an hour later, maybe a lick of butter as a snack, then a couple more bites of applesauce later.  I’m really really proud of how well we have done at keeping her “oral” in spite of all the gut issues she endures. And even though it doesn’t always go all the way through her system (most of it ends up sitting in her very weak stomach until it drains out hours later) – she eats.

How this relates to our current news:
Her GI doctor has come to the realization after the last few years of trialing multiple formulas, that maybe Kendall’s body is just not ever going to accept a commercially prepared formula as a means of nutrition. This really isn’t surprising considering the ingredients of most of them (corn syrup, etc.) – but it’s a confusing and hard to understand thing.  i don’t know WHY her body doesn’t accept the formula – and really, even that is just a theory at this point – but clearly, j-feeds have only led to a vicious cycle of bad septic episodes.  The last few months we have given her a break from j-feeds, and she is doing fabulously. Coincidence? It’s hard to say. But it’s not really a theory anyone wants to put to the test again.

so for right now – we are saying “see ya” to j-feeds of formula, and we are saying “come on, condiment queen!” to the rest of her gut! We are going to let Kendall prove to us what she can do for herself nutritionally. we are going to be SLOWLY SLOWLY SLOWLY weaning the calories down out of her TPN, and seeing if she can continue to maintain her nutritional status based on what she can take in orally.
i’ve gone over her diet with a fine tooth comb with our TPN dietician, and she is aware that we are talking miniscule amounts of food right now. But the hope is that if we can keep Kendall’s lower GI tract “cleaned out”, and maybe force her into “hunger” by reducing her calories, that she will inherently take in more calories on her own. Again – it’s only a theory at this point – but it is at least a PLAN and it at least FEELS like we are making forward progress!

right now Kendall’s TPN calories are three times what a “normal” 6 year old needs based on metabolic testing that we’ve done. Weaning her calories will be a painstakingly slow progress before we can say we’ve done anything major or noteworthy – but the point is – we ARE making progress. We are moving forward – and this is HUGE!!!!!
I feel like i’ve not done a fabulous job of fully explaining why this is all so awesome or why certain things work while others don’t.  I guess on some level – I don’t have all the answers. I just plain don’t know why my kid is the way she is. I just know she’s awesome, and she’s forging her own path. And i don’t know where this path will take us. But I’m glad to be on it.

So that’s our news!

I have lots more other blog posts floating around in my head – but my computer is still being slow and stupid and I’m feeling not very coherent right now so i’ll try to post more tomorrow.

Peace out party people~

T-crest.

Happy New Year!

So, yeah, i know it’s a few weeks late. I like to make sure we are really firmly embedded in the new year before i start throwing out too many wishes for a new year that is happy. Just go with it.

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As most of you know around these parts – no news is usually good news. It means we are on cruise control, shoes aren’t dropping out of the sky, we are keepin on keepin on. And that is how it has been. I admit that i was shocked when my father in law pointed out that it has been two months since my last post. TWO MONTHS!!??!?!?! I guess I feel sometimes like i’ve written posts in my head – they just don’t make it out of my fingers and onto the screen and then they are gone. And it was the holidays which means there’s a lot of other stuff going on and it’s not always easy to sit and blog. And then there was that whole virus crap on my laptop and it was taking twenty minutes to start up and ain’t nobody got time for that. So…

yeah.

But hey!! New Year~ fresh slate ~ a wide open schedule of blogs to be written. And I am actually excited about that! I have often thought (even though i am not good at telling you all) that i absolutely love the friendships and relationships I have been able to form through blogging. I love interacting with you guys on the facebook page, or when you send me random emails asking if i’m still alive, and how, when I need it the most, your encouragement shows up and keeps me smiling. That is the reason I am excited to blog more this year. Because of you. So thank you!

20150124-104240-38560677.jpgWhile it is still January (which, hello – is this month flying by for anyone else??? I can’t even wrap my mind around it!), I’m going to do some catch up posts – updates on the girls, things that have been going on around the house (a team of organizers came in and CLEANED OFF MY DESK. I can’t even…), and i will tell you about my “word of the year” and what it means to me. Do you guys do that? Have a word of the year? I know a lot of people do. My friend Julie just posted her word of the year post on her blog and it really made me think. I loved her post, her openness. I hope you take a minute to head over and read it because I hope it makes you think too.

And then it will be February! I like February. I love Valentine’s Day – not so much because i get lavished with love on that day – but because I like to lavish it on my kids. I love the colors of the holiday – i love the cutesy little heart themed decorations that overtake every retail store and i love to get them all matching Valentines shirts (although that is getting harder every year to find shirts that match in all their sizes. stupid growing up.) and i just like it. i love it actually. it makes me happy. This year on Valentine’s Day I will be helping some of the craziest (yet funnest) people I know – other moms of kids with special medical needs) serve a Valentine’s Dinner at the Ronald McDonald House for Comer Children’s Hospital. It is sure to be an absolutely insane time. But anyways – we will be making survival kits for the families and we are looking for donations to put in there – small things that you sometimes just need in the hospital – comfy socks, chapstick, hand lotions, etc. I Am sure I will be posting more about this separately but if you would like to help us out with this, send me an email or a facebook message!

I have to still do a vlog on my reaction to the 90 Day Fiance show I got so many of you hooked on. And then talk about my new favorite shows of the season: Little Women of LA, Big Women Big Love, My Fit Fat Fabulous Life, and Rockin the Boat. I’m sure there’s a couple others that i’m missing – I’ll have to ask Kealey. She is the keeper of all things TV schedule. Anyhoo – tell me if i’m missing anything good – what are you watching these days?

And yes – almost a year later – I will finally get around to our MAW trip recap. Remember that anyone??? 😉 Geez.

So – there you have it. An update of sorts – AND a new post finally. I know it’s not earth shattering stuff – but it’s a start. And there will be lots more coming in the days ahead. If you miss my blogs – you can always catch up with me on other social media. I go in spurts. Sometimes i’m all about the facebook, other times i’m tweeting my rants against mcdonalds for pulling the holiday pies early this year, sometimes i’m just pinning away like a little pinning queen…the icons are all up in the upper right hand corner of my blog header if you’re on the computer – and on mobile I think they show up below the post.

I hope you guys have been doing well. I’ve missed you. Say hi and let me know how you’re doing. Tell me what you wanna hear about. Some of you have really good inspirational things sometimes so tell me everything!

Have a beautiful Saturday – whatever your plans entail.

Love and hugs~

T-crest.

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#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.

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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.

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Or like this.

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Or like this.

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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.

A Story.

This here’s a story all about how my life got flipped turned upside down….
Jay. Kay.

It IS however a story of the crazy day I had.
I know how much you all love to laugh at/with me.

So – in case you needed reassurance that you were actually a much better mother than me.

I woke up late. I’ve been having having bad eye allergies lately. When my eyes are allergic they hurt in the morning. It’s hard to open them. I also hate getting out of bed before 10 am, so…. you can see the dilemma. Anyways – so there i was, laying in bed and dreading opening my eyes when Karissa walks in and her hair is a hot holy mess (as per usual) and I remember – it’s picture retake day.
They had to miss the original Picture Day at school because their sister had just gotten intubated and they needed to come up to the hospital to see me because we knew we were in for kind of a long haul so they got pulled out of school for that day.
So I force myself out of bed and start trying to deal with K2 and K3’s unruly hair. At least they had picked out semi-cute clothes the night before so i didn’t have to fight THAT battle…Until k4 came in dressed in an orange dress when i’d picked out a cute leopard print one for her. It was orange day for spirit days. If there’s a color that an anemically pale faux red-head should not ever ever ever wear – it is orange. So – we compromise. She can put on the cute dress for picture time and wear the orange one for school. Fine. Go back to trying to curl both girls’ hair while trying to get my eyes to cooperate and get dressed in between because I was supposed to meet with our social worker from palliative at 9. And by the way I can’t get my contacts in my stupid puffy eyes and i cannot drive in my glasses. Plus i’m too vain for that.
So we finally get everyone dressed/hair kinda cute/put on the buses, and I make it to starbucks in time.

Standing in the line at the Starbucks I get a phone call – and I could see that the number had just called my home phone too so i thought it was important and i answered it. It was the Dentists office.

“yes, mrs. atkinson? we had the girls all scheduled for their 6 month cleanings this morning…..at 9???”
me: that’s cute. It’s almost 9:30 now.
“yes, so….we can get you in at 11:30 for all of them or…..you’ll have to pay the missed appointment fees???”
me: ummmmmm. Do you have antibiotics for Kendall then? (and by the way why is everything you say to me a question?!?!?!?)
”no, no, we dont have the antibiotics…” (kendall needs antibiotics because of her endocarditis issues)
me: ok neat. Then cancel Kendall, we will figure her out later. I’ll have the other three there at 11:30”

So….. I suck.
And then that made me remember that I needed to call milwaukee to change our IVIG schedule/surgical appointment AGAIN (for the third or maybe fourth time) because we actually have pulmonology on Monday and that takes forever to get an appointment with him so i can’t move that – but the surgeon is also very hard to get an appointment with and we had just finally set that up so I can’t move that. But ben is out of town so i have to try to cram in the surgeon appt AND IVIG but we have to run IVIG over at least 6 hours so we can’t go too late to the infusion clinic and oh my gosh my brain might explode!!!! Anyways. No time to think about that now.
Got all the social work stuff done, ran to Kealeys school, schlepped through the cold to get her, went to the other school, had them pull the girls out of their classes, got the picture schedule so we could make sure they didn’t miss pictures AGAIN.

Drive to the dentist office where I am handed a manila folder full of paperwork they need to “update”, hand off the kids to the techs, and start doing the insane amount of paperwork. The kids get finished before i am done with this paperwork (and believe me – i am mostly filling it out by writing “see above” or “check sisters file” because that is just too much ish for me to be dealing with. They have copy machines for this crap.) No cavities but I get the usual lecture on helping them floss and set a timer for brushing. Trying to stifle laughter because if they even remember to put toothpaste on a toothbrush and put it in their mouths at least twice a week we are doing good. But ok. Kaylen is having molars come in so she isn’t just being dramatic about her tooth pain – and they need sealants in a couple months. Kealey’s molars just came in so she needs sealants too. Karissa needs a followup with ortho which – oh joy!- was already scheduled for this coming friday. better write that down on my hand so i don’t forget.
Back in the cold, grab some mcdonalds, because by now they’ve all missed their lunch periods, drop off kealey at her school, take the big girls to their school, get pulled into their social workers office to discuss kendall’s IEP that is hard to meet because now she’s only there for two days a week. Fine. Change her goals. Just make sure she can SIT STILL and not hit other kids in the class when she doesn’t get her way – word that however you want. I don’t care.
By this time I have to pee so bad i am not even sure how i’m still holding it. Eat an eclair for lunch because, hey, it was there and i needed the sugar. Get Kendall into bed, try to catch up on some school/medical paperwork I need to do, have a discussion with our nurse about the schedule for tomorrow and next week, freak out because i have literally done NOTHING for Kendall’s birthday tomorrow, and then greet children coming home from school.

And get told
“the camera broke so they have to reschedule picture day”.

 

And that is why mommy is rocking in the corner chewing xanax and clutching a bottle of wine.

THE END.

when the icu feels like home.

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

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

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

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

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

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

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

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

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

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

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

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

 

terra

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