She’s my Hero.

I know I’ve said this before. And i know that most of you already know this, and agree with it even. But I have to say it again.

This kid is amazing.IMG_1587

She spent most of the nite fighting an ever-increasing fever, getting transferred from the regular pulse-ox monitor to the “bowl of spaghetti” cardiac monitor because of how high her heartrates (HR) were spiking, and how fast she had begun to breathe. She is enduring hourly rectal temperature checks (something I think they should implement in any place they want to inflict torture on people), almost non-stop rotation of meds and fluids and TPN on the five connectors they had to add on to her single-lumen broviac. I have a hard time finding a place to hold on to her to help her change positions that isn’t covered/tangled in cords! And this is all still “on the floor” (vs. being in the PICU, which has been threatened a few times already.) In spite of how crazy it all sounds, she is actually DOING pretty good.

Somehow, she is able to have a few hours where her fever isn’t hot enough to boil an egg on her chest, and in those hours, she is happy, almost bright-eyed (she has very very “sick-looking” eyes, but at least they are open and smiling), interactive, and not whimpering in pain every time she is touched or moved (like she was with her infection in February). At this point, she is fighting a nasty infection, but the key is – she is FIGHTING it. Right now, I feel like my baby girl, the amazing fighter that she is and always has been, is winning. She is not septic (according to any of the labs I have been told about). She is wanting to still engage in life. She is asking for her sisters and her daddy and her nurse and of course, “hot-gog” (Mickey Mouse Clubhouse).

So what does that mean? Well – it means that she is “fungemic”, having a fungal infection of her bloodstream. We don’t have “sensitivities” back yet on the fungus – but we are assuming that she is growing the same strain of yeast that she grew in February. (For Poppa Bob: sensitivities means that they grow the fungus from her blood in different little dishes and they shoot each little petri dish with a different kind of anti-fungal medicine. The ones that april29blog1 kill the yeast are the meds we can use to kill it in her bloodstream. We want it to be “pan-sensitive”, meaning that a lot of different kinds of anti-fungal meds will kill it. It gives us more options.) Assuming that it is the same strain of yeast, ID (infectious disease doctors) feels comfortable saying that it is more than likely coming from inside her, or “translocating” from her gut.  With a gut that isn’t moving real effectively right now, all the normal flora (bacteria and yeast that is in everyone’s stomach that helps digest and breakdown food) just kind of sits there, instead of getting moved through by all the little brush-like fingers that line your digestive tract. Think of a real thick swamp filled with stagnant pools of water vs the ever-flowing might rush of the ocean tides. Most of us have ocean tides moving crap (literally) through our guts. kendall’s is more like a deep southern swamp on a hot august day. Bacteria and fungus that isn’t being moved through has nothing better to do with itself than sit there and multiply. When they sit there for too long, they “leak” through the intestinal wall into the bloodstream. In a bloodstream without fun sugary plastic pools in them, not much really happens. And as we learned in yesterday’s blog, when there IS a sugary plastic hangout, well, THIS happens.

At this point, we are trying to do some workup to assess if the blame is more on Kendall’s gut or if its her inherently sub-optimally functioning immune system just not knowing how to kill yeast real effectively. She has definitely battled yeast overgrowth nearly her whole life. As i put it to a friend earlier today trying to explain why kendall is having such a problem with yeast: Yeast likes sugar. Kendall loves sugar. Kendall lives off sugar. Yeast live off of sugar. Yeast love Kendall. Unfortunately, it is looking like this may be something she has to deal with rather regularly. And again, if we can keep it limited to her nice, not-pissed off-yet regular yeast, we will be able to keep a lot of options open for treating it. Yeast is bad. There are no two ways around it. But when it becomes a major problem is when the body gets septic trying to fight it. Yeast is just very stubborn and hard to beat back. But it CAN be done. And THAT is what we are hoping and praying for for Kendall.

She had a pretty nasty fever spike this afternoon. i hate sometimes how very much i know this little girl and her patterns. I knew that her good morning was unlikely to last real long, and sure enough, at about 11:30 she went from sitting up and playing to huddled under three fleecey blankets moaning to herself, shaking the bed with her intense shivering, retching and puking and choking, and a heartrate that skyrocketed. The weird thing was, she started all this about 20 minutes before her temp actually spiked. I like how the nurse tried to convince me that she was fine, took the thermometer out, and then just about fell over when kendall was 104.1 less than 30 minutes after we had checked her and gotten a 101.3. It was about 2 horrific hours of watching kendall’s heartrate and fever continue to climb in spite of tylenol, ibuprofen, versed, and cool cloths. Finally after about 5 doctors came in and out to check on her, look puzzled, and walk back out to make more phone calls (I have no idea what they were all doing actually – i just know it had our end of the floor hopping!), they ordered an “ice bath” – which isn’t really a bath, but ice packs shoved into pillowcases and layered all over her body, with cool wet washcloths on top of that. Right before the ice bath was started we checked her again and she was at 105.1, with her HR consistently above 210 beats per minute.

Blessedly, the ice bath slowly began to work its magic. She was sleeping april29blog2 within the hour, and had come back down to 103.9. She took a nice long nap, i was able to go move the car out of the ER parking lot, get some good Taco Bell grub, and enjoy a nice lukewarm chalupa before she woke up and we got the GREAT news that she is off of isolation! We got to cut off one of her arm bands, get rid of all the isolation warning signs, and go for a ride on her little red car! Its the little things in life I guess!

She is now sitting under the fever curve – first check was 95.9, but after a second LONNNGGG manual check, we got it up to 99. I hope this is her body’s way of dealing with the stress of the infection by just having wacky autonomic temp changes. Leave it to Kendall to have a ten degree temp swing in five hours! The Sr. on Call for tonite has already come in and checked on us and gone over “the contingency plan” in case Kendall pulls another crazy spike like this afternoon’s. (It involves lots of tylenol and advil, lots of fluids, and lots of ice on hand!) Hopefully we wo’nt need it. I know it may seem naive, but I believe in a God who is WAY bigger and WAY smarter than these smart little yeast buggers. He is the Great Healer, and He can heal her body, cleanse it from all this nasty yeast. (and here is where my parents will be so proud they sent me to Bible college and that I worked super hard to have a double degree, one in Biblical studies).

See, God hates yeast too. I know this cause Jesus talked about yeast (actually leaven, of which yeast is one of the leavening agents we have). Anyways, the Jesus I like to picture was kind of a rebel. He probably would be like one of the homeless dudes we see wandering around, hitchhiking, making nomadism look cool and hip. And the one thing he did NOT tolerate was bullsh*t crap from anyone. Mostly from a group of holy know it alls called the Pharisees. One time the Pharisees were trying to trick Jesus into saying some stupid thing or another – and instead of answering them, Jesus told his disciples, “I hope you’re never poisoned by the yeast of these idiots Pharisees.” I like to paraphrase this into “yeast sucks. it spreads quickly and poisons your mind.” And yes, I get that i am reaching here to make the connection. My point is not to give a Bible study on the use of the word yeast in the Bible, but rather, to find a connection to that which gives ME faith. I know that as much as I hate yeast right now, God hates it even more – or at least, the damage it can do to a body when its become a poison instead of a help. So tonite we are praying that her body is able to fight back the yeast, to filter the infected blood out through her kidneys and create new yeast free blood.

She is amazing and she is a fighter and if anyone can do it, its this girl. She is so strong. IMG_1456 I was talking with a friend earlier, actually one of the pastors at our church. He likes to goof around a lot, but when he really needs to, he can bust out with the most profound statements ever. Today was one of those days. I was relaying to him an update on Kendall’s status and I said “I wish I had half her strength.” He said “you do. You have half of her strength, and Ben has the other half, and because of you two, she is able to be as strong as she is.” It just – it was what I needed to hear.

Praying for a better nite here in 1124, and for all of you, wherever you are and whatever your “yeast” is tonite – that you fight it, that you are strong against it, and that you keep on winning.

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  1. thinking of you all.. sending pac men in my mind your way to chomp up those big bad yeasties!