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.