I talked. Again.

And I made a video of it. And while it feels somewhat awkward and random, I’m going to just let my words speak for themselves in this video. It gets a little long and rambly – like that surprises you.  Anyways, I hope it kind of opens up my writing floodgates now.

But mostly, I want you to know that we are all gonna be ok.

 

Thanks for watching.

 

Terra

So it takes this.

This is what it takes to get me writing again.

Watching my baby girl fight with all she has against yet another life-threatening illness. Except right now we don’t know what she’s fighting. All i know is, she is sick. Worse than i’ve seen her in a pretty long time. I’m so grateful we have had this reprieve from this all-too-familiar tale of sepsis. But oh it makes it so much more brutal to watch her body fight through this again.

For a long time i stopped writing because i was so worried or concerned about what other people think of how i portray Kendall’s story, my feelings, my story, our story. There are so many reasons my fingers could not portray the feelings in my head and my heart. But now is the time.

My baby girl is a fighter. I am a fighter. We are all fighters in our own way – but this is our story.

So i will tell it as I feel it is best told.

 

Today, this morning, her story is this:

Her body is fighting well against whatever enemy is invading it, but it is a neck and neck battle right now. She is battling high fevers, vomiting on a pretty regular basis, has bad headaches that come and go, and in general just feels and looks miserable. Her labs show the battle that is being waged internally. She is being given meds to support her body – IV tylenol and ibuprofen alternate in constant rotation with enteral tylenol and ibuprofen – there are only a few minutes at a time that she doesn’t have one of those anti fever meds going in. And still hardly any relief from the high fever. Along with that she is getting two IV antibiotics that run nearly constantly, plus IV steroids, IV zofran, IV benadryl and fluid boluses in an attempt to keep her blood pressures up. All of these are intended to support her body in various ways so that her body can focus on just fighting whatever bug is attacking it.

And here’s your oversimplified science lesson for the day – since it’s been a couple years since i’ve had to try to explain what it is that we are actually fighting.

With any illness that you or I or our kids fight, our bodies will ramp up their defenses to kill the offending organism, whether it’s a virus, a tummy bug, a bad cut on our finger, whatever. Our bone marrow pumps out the white blood cells in order to go attack the enemy, the body furnace turns up higher (a fever) in order to try to kill the organisms with heat since most of them like the nice even temps of our bodies at 98.6 degreed fahrenheit, and our organs all kick into higher functioning in order to clear out the bugs sooner. Our bodies are amazing. They do all these awesome things to fight organisms it knows shouldn’t be in there. And sure, we can get REAl sick and feel REALLY miserable and feel like our bodies arent doing their jobs at all because it’s taking so darn long to get rid of our symptoms! But that’s because in order to do all those things to fight an infection, it needs a lot of support – rest, fluids, vitamins, good food, etc. Anyways – i’m digressing.

The point being – it takes a lot of energy for our bodies to do what they know how to do in order to fight an infection.

And for Kendall, her body doesn’t always have that much energy. So her body is being overtaken by the bad bugs, with no good guy blood cells to go do their job because her body doesn’t recognize “hey! wake up! we are being invaded!!!” Until her organs start having a hard time – kidneys, liver, gut, etc – and then catastrophic shock like symptoms start to hit. Those are the times when are going so do we call 911 or drive like a crazy person to the ER because she’s spiked a temp, is shaking uncontrollably, and getting very sick very fast when a few hours before we were just calmly eating dinner or whatever.

The problem is then that the bad bugs have started to do their damage to the internal processes and indeed even the organs that should be sustaining life and will continue to do so until we mobilize her immune system by adding in the steroids and antibiotics that help kill off the bad bugs. So that’s where the “race” occurs. Will the bad bugs do too much damage before the antibiotics come in and eradicate them? And do we even have the right antibiotics to fight those bad bugs because we don’t always know the enemy until the culture report comes from the lab saying what exact bug it is and what drugs it is susceptible to (we call this “susceptibilities”). 

Anyways – that’s the background of what worries me, why i sit here and watch her monitor numbers because if those numbers indicate trouble, it means we aren’t killing the bad bugs. If her fever is still spiking up, it means her body is ramping up to try to kill more bugs. Sometimes the antibiotics just royally piss off the bugs and they multiply in order to try to avoid being killed off. Then her body tries to make more immune cells and this wears out her other organs because all her energy has to divert to her bone marrow and so then we have to make sure her kidneys are still filtering pee because if they aren’t clearing out the fluids we have to dump into her in order to keep her blood pressures stable then all that fluid goes right to her lungs which is why she ends up not being able to breathe very well and we have to add support like bipap or the ventilator/breathing tube. All of that is a delicate cycle of balance and with Kendall, we don’t get any large red warning flags usually. We have me, who just has “gut feelings” and “momma instinct” that things aren’t right, and then i have to go and be a yappy litle puppy to the doctors in an attempt to get them to understand that we aren’t winning the battle and we need to do something more and we need to do it SOON.

 

and that’s where i’ve been at the past few hours.

Last night was rough. I was very worried she was headed towards intubation because i could tell that her body was not keeping up with the necessary cycle of balance. She was exhausted. Her heart has been beating very hard and very fast for a lot longer than it usually does (due to the fevers and extra fluids), and she was just starting to get worn out. She managed to remain pretty stable throughout the night and for that i am incredibly grateful.

She is looking better on the monitors and even on her labs a little this morning. Which would normally mean hey! yay! we are winning!

And yet, she just isn’t perking up like i would hope. She is still very sick acting.We had some talks on rounds (when the team of doctors and nurses caring for her all sit and discuss the plan for the day and how she was overnight) about what is still going on and what our plan is to try to help her feel better.

For right now, we are boosting her up in steroids to hopefully help her organs stop sucking all her energy and get her all around feeling better.

Her main two doctors and I have a high suspicion that we are possibly fighting yeast in her blood stream – fungemia, or fungal sepsis. She has fought this before, and presented very similarly, which is why our suspicions are high. Now, we could be wrong. And I hope we are. But the last time she had this, we had a similarly acting kendall. Lethargic, sick, but seemingly doing “ok” according to the labs. And then bam out of the blue, the yeast get real pissed off and just overtake her and we are scrambling to add supports to her. So those supports are all in place should she need them, but we hope maybe the steroid boosts will be enough to help her round the proverbial corner we are all waiting on.

Right now, Saturday morning, I feel ok with this wait. Last night I did not. Sometimes we just go based on how i’m feeling and what kendall tells us with her behaviors and in her own words. Right now i’m not getting a whole lot of words from her so it’s heavy on the momma instinct. And my momma instinct tells me we have a good plan in place. That I’m ok to go home tonight to see my other babies who i miss terribly. It is so hard when i have my heart split into two places, two states. I hate leaving Kendall, I hate not seeing my other babies. I need some sleep. I need a shower. I need to stop thinking. I was woken up this morning to go have a high level medical discussion while i was still rubbing sleep out of my eyes. My brain is on overload and it needs a break. my heart is on overload and it needs a break. I need to get other clothes. My darling children packed me three bras, a tank top that says “whiskey is my spirit animal”, a pair of sweatpants, and one long sleeve shirt. It’s made for some interesting outfits. I need to go in to work tomorrow. Hours have been in short supply the past couple weeks as is the nature of retail in January, and i more than ever need the paycheck. so i am torn. I am always torn. I am always feeling like i let someone down, no matter what i’m choosing.

Anyways – that’s where things are at right now.

Stable, but cautious.

 

I cannot thank you all enough for your prayers, for the love via texts and messages, for checking on me. To my friends who sent or brought food to me at the hospital because you know i am not eating or drinking enough, thank you. You are the reason i can sit at her bedside and watch numbers. Your prayers sustain us and i am forever grateful for them.

Keep on Keepin on~

 

T.

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

Hangin’ In There.

*tap tap*

Is this thing on? Is anyone still out there?

I know it’s been a while. And a while more before that.

Someday i’m sure i will be able to write about where i’ve been the past, oh, year I guess. But most days, it’s just really really hard to put this all into words. The stress. The pain. The feeling of being utterly overwhelmed by life most days. But for now, it’s just this. Hangin in and keepin on.

And today, the dam of emotions is threatening to break. I got an email this morning that if I don’t renew my domain and web service in the next seven days, terra talking will cease to exist.And the thought of this is bringing me to tears. No I haven’t written in a while – but every day my heart longs to. Writing is just who i am, how i am. Looking back on my old blogs reminds me that once upon a time i was a good mommy, one who wasn’t stressed about money all the time, didn’t feel at the end of her rope all the time, was capable of handling almost anything life threw her way. The thought of losing all these written journals about my life, Kendall’s journey, the memories…..it literally brings me to tears.

I am currently looking for a job that will allow me to work hours that work with my kids’ schedules, and that will hopefully be flexible and understanding enough with the unknowns of Kendalls random hospitalizations that I won’t have to bounce from job to job.  Being a mommy (and a super skilled nurse to Kendall) is the best job I have ever had but wow, the pay is really really low!   If you know of anything – let me know! But the truth of the matter is – I am beyond broke right now, and even though i hate doing this – I am coming here to ask you for help. So many of you have so graciously given over the past few years and I literally hate being here again right now. I do not in any way expect this help, but i’ve learned if you don’t ask, no one will know. So –I need to come up with $200 for my website fees in the next six days. If you love terra talking even one fourth as much as I do and don’t want it to go away – i’d be honored to have your help.
The easiest way would be to send a couple bucks through paypal if you are able and willing (and believe me, i won’t be upset if you can’t!) I’ll put my link down below.

The way the link works is that you will be directed to the paypal website, you do a quick sign up for a paypal account if you don’t have one (basically it asks for your name and email address), and then you can send money from an existing paypal account or use a debit/credit card.
As soon as I have enough to make the payment, I’ll take the link down.

I just want to thank you in advance if you are able to send even a dollar or two. My heart is humbled to even have to ask for this help. But i am so blessed to be surrounded by such an amazing and supportive tribe, and I hope you know that I couldn’t do this without all of you.

I promise and pledge that if we are able to save Terra Talking,I will write more. Every day and twice on Tuesdays. I will find my funny voice again and I will share it here.
For right now, that’s about all I have to say about that.

Thank you, all of you.

Keep on Keeping On

 

me.

 

You guys are all amazing. Thank you from the very bottom of heart for helping keep my little blog around. There are not enough words to express my gratitude.

Just one last Post

hello-ceo-post-2How about some Cupacake Ipsum?! Check it out at cupcakeipsum.com and create your own delicious Ipsum. Dessert candy tootsie roll jelly-o bear claw chocolate bar apple pie. Chocolate cake tootsie roll lollipop caramels fruitcake powder marzipan. I love cake chocolate cake danish cheesecake chocolate ice cream jujubes caramels. Jelly oat cake jujubes gummies macaroon. Tiramisu chupa chups fruitcake. Soufflé chocolate bar topping caramels cotton candy chocolate bar fruitcake powder pudding. Icing wafer fruitcake apple pie apple pie soufflé gummi bears cake jujubes. Marshmallow sugar plum jelly-o icing chupa chups croissant candy canes gingerbread dessert.

Marshmallow donut pastry sweet roll croissant. Gummi bears lemon drops I love cake toffee caramels tart gingerbread. I love gummies powder cookie tart candy canes lemon drops. Cake I love sesame snaps gingerbread tiramisu dragée. I love chocolate cake muffin croissant wafer sugar plum ice cream chocolate cake soufflé. Caramels chocolate wafer chocolate bar powder.

Tiramisu marshmallow bear claw caramels cupcake sweet. Sesame snaps cheesecake tart cookie donut powder donut gummi bears. Caramels apple pie pie liquorice danish dessert fruitcake chocolate bar toffee. Ice cream I love jelly beans liquorice halvah ice cream. Cake I love macaroon dragée. Cake gummies jelly beans.

I love topping I love lollipop I love tiramisu bear claw halvah jelly beans. Ice cream I love powder dragée gingerbread. Tootsie roll cheesecake fruitcake liquorice topping I love biscuit chupa chups. Icing toffee I love muffin biscuit. Soufflé jelly beans candy croissant chocolate dragée I love pudding. Topping I love jujubes. Candy cheesecake chocolate sesame snaps I love macaroon. I love lollipop cupcake jelly chocolate bar. Toffee jelly croissant toffee.

Pudding lollipop I love jujubes. Marzipan sugar plum jelly-o topping halvah ice cream. I love candy I love sugar plum dragée topping lollipop. Cotton candy tiramisu jelly-o. Cookie cake powder pudding. Macaroon bonbon sweet tart chocolate cake tart. Sugar plum cupcake pie fruitcake brownie. Gummi bears gummi bears powder halvah donut wafer sesame snaps. Toffee carrot cake pie pudding chocolate cake cotton candy. Croissant marzipan wafer sweet gingerbread brownie ice cream I love.

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