Quick cliff notes catchup for the peeps not on facebook: Kendall is back in our local hospital with another infection. We were admitted late Saturday afternoon, and by mid-Sunday morning we knew she was growing yeast in her blood/line and bacteria in her urine. She was spiking fevers up to 105 early on Saturday after a semi-weird/off day for her on Friday, and that’s why we brought her in. She looks about as sick as she is – which is pretty sick right now, not gonna sugarcoat it. However, in typical Kendall fashion, just as quickly as she looks like she might be going downhill, she will perk up and ask in the sweetest voice if it’s time to go back to our car or go paint in the playroom yet.
So this is what is throwing me. She usually reveals her secrets in some way, at least to my discerning eye. I can typically tell at the first sideways fart whether or not she is sick/getting sick/needs to go to the ER. But this time I couldn’t. Even now, as we sit here with the limited info we have, I cannot tell you what is going on in this little body of hers. I know she hasn’t made the turn around the corner that I like to see by this point. She was started on what should be “the right meds” last nite, has been getting nonstop fluids/meds/antibiotics and antifungals – but still, she’s just not “better”. She’s holding her own, don’t get me wrong. But she is up to something.
Right now, there is a very good possibility that what she is growing is resistant to the medications she is on. This could be because they are just strange (new) bugs, or it could be that her recent back to back issues have caused her bugs to “mutate” into resistance. (I’m oversimplifying it obviously – microbiology + me = not a good combo). Either way, all we are doing right now is holding the party in her bloodstream at bay. We are kind of playing a crazy game of thumb war, except with bugs vs meds/organ systems. If the bugs continue to eat through all her good blood cells, she has no defenses, and she could become “septic”. Right now, there seems to be a standoff in that the bugs aren’t necessarily doing further damage at the moment, but they aren’t leaving her system either. The medications that she is on COULD just be pissing off the bugs even more, or they could be helping us gain a small victory. It’s hard to tell without knowing exactly what is going on in a little petri dish down in the basement somewhere labelled “Atkinson, K.”
I know that fungus (yeast) is Kendall’s long time arch nemesis. Her immune system is basically useless against overgrown yeast, but they sort of have an understanding and for the most part, leave each other alone. Yeast is nasty to get rid of. It can attach to any one of the plethora plastic tubes inserted in her body at any given time, and start a nice little family of blood-sucking killers. We are hoping right now that perhaps that is all that is going on – that we are drawing back fluids from these plastic tubes, and drawing in a bunch of yeast babies, and that they haven’t run rampant through her system again. This would be best case scenario. We can kill small little colonies hanging out at the entrance of plastic mecca’s. If the yeast has gone systemic, we have a much bigger battle on our hands. We simply won’t know the answer to that question though until the petri dishes, and/or Kendall’s body, give up their secrets. She is currently, like clockwork, spiking fevers through the antibiotics/antifungals/antipyretics. With these spikes come horrible chills, very high heartrates, lots of horrific retching (trying to puke but being unable to because there’s nothing in her stomach, and even if there was, her stomach is tied in a knot surgically to prevent puking). This gives her a wicked headache and in general makes her beyond words miserable. It is heartbreaking to watch. Our nurse is amazing and has started anticipating these small little signs that something is coming up, and has been SUPER responsive with getting things pushed in to help relieve the spike before it can even build up.
Our doctor has been on the phone with the team in milwaukee. Until we know more info about what is growing and where, there just isn’t a lot that can be done. ID (infectious disease doctors, people who actually LIKE microbiology) should be coming by in about an hour to help us try to sort out what is going on, what meds to switch to, get a plan in place for if we need to talk about transferring.
And in the time it took me to write that – he was in here discussing plan!
For tonite, we are switching up her meds, trying the one thing that has consistently worked for her in the past (a somewhat brutal combo of meds, but better than the “last option” med that the doc originally brought up). She is definitely starting to feel the effects of being so sick, and is just “tired”. I put that in quotes because I don’t think it’s possible to fully sum up what I mean by tired with kendall. She just needs rest. She needs some support troops (better meds) to come in and help fight off the fungus. We need those little dishes in the lab to offer up some good info very soon. She NEEDS to start making pee again. Right now her kidneys and her gut are not super happy, which is to be expected with a sickness like this, but the pain that this is causing her is hard to stay on top of.
tomorrow is picture day at school. I have three other little girls at home who need help making sure their hair is not its typical banshee style, who need clean leotards and tights for ballet class tomorrow. Who need to be comforted by mommy that sissy is doing ok and will be home soon. Ben took this week off of work so we could switch on and off. the black and white stuff that is easy to check off a list, we got that down. If i try to stop and think about some of the other stuff, the little stuff, then i start to fall apart. By little i mean, questions that we just don’t have the answer to right now. But this is the way of our lives. Don’t make plans – they’ll likely be interrupted by a hospital visit. Don’t get too attached to thoughts of a clean house – it will likely never happen. But we will experience blessings in ways that other never get to. A card from a friend. An unexpected visit with coffee just the way i like it. A crazy voicemail with words of encouragement, and a few hysterical inside jokes thrown in for good measure. A cheeseburger that is so good it nearly brings tears to my eyes from a friend who was “just passing through”. You all give me the strength and encouragement to go on. And when I have strength, I can pass that strength on to my family. your prayers are felt – they always are.
Your offers of help – please believe me, they are so appreciated. I don’t often even know what “help” I need to start asking for! Assuming we stay in the area,I may need help with the logistics of getting the big girls to/from dance. Kaylen’s super-fun half-day kindy schedule may require some creative planning. Those of you who are just texting for my food orders/coffee orders – God bless you. Seriously. I don’t think I can tell you how very awesome it is to be able to get real live hugs from some of you during these times. When we are stuck in Milwaukee, we do get a few visitors – and our family is so graciously awesome who lives up there. But there is nothing that can replace having so many of you so close, and so HERE with us through it all. So thank you to everyone who has already stopped by, or given hugs. Including those friends who were in the next door room to us in the ER last nite with their own son! Sanctuary people – you are AMAZING examples of God’s hands and feet here on earth. We could not live this crazy life if it were not for you.
This is getting crazy rambly. I’ll try to update in the morning as soon as I hear more info.
Thank you, thank you thank you – for praying, for caring, for being on this journey with us.