I was shaken awake by a resident last nite to let me know that Kendall’s blood cultures had come back positive. For yeast. Again. This was ONE of the foes she fought in February when she was very sick. I was able to hold back the tears while talking to the doctor because while I am no expert in line infections, I know yeast is always bad. It is a very very tough little fungus bug to clear. The medicines that fight fungus are given once a day (vs. bacterial infections where you get antibiotics every 4-6 hours). Yeast loves sugar – Kendall survives on sugar. Somewhere in there, the equation starts to not add up in her favor.
She spent the night continuing to have her fever climb higher and higher with each new “re-spike”. Her pattern is to have a high fever, we throw a bunch of tylenol and/or motrin at it, she gets about two hours of “relief” (which has thus far meant only bringing it down into the 102 range), and when we recheck it again, its even higher than the first time we checked it. At last check (around 4 am I think – details get a little fuzzy on 3 hours of sleep in 48 hours) – it was 104.9 (40.5c) She had started puking again at that point, so we re-adminstered the tylenol/motrin combo, turned off the enteral (J-tube) feeds she had been getting, and gave her another fluid bolus. (Bolus: a quantity of fluids delivered over a much quicker timeline than normal delivery would require. Normally she gets 90cc of fluids an hour. When we bolus her, we are giving her triple that amount in an hour to give her body some extra stores to burn through with this fever.) According to our ER checkin weight and our admit to the floor weight (about 7 hours), she had lost two pounds. While I don’t think it was all actual weight (she had a onesie on in the ER and did not have it on up here on the floor), it is obvious that she has already lost a lot of the water weight she had been holding on to for the past couple weeks. her body is just burning so hot all the time, she is breathing so fast, and her stomach is pumping out some impressive amounts of “bilious drainage”.
In a nutshell, at least we have an explanation of why she LOOKED so horrid, and has continued to kind of get progressively sicker over the past 24 hours. It will be one heck of a fight for little miss KQ. But, at least according to the discussion I had with the Sr On Call last nite (kind of a middle level of doctor, not a docling like a resident, but not as good as an attending yet), they are ready to help us help her fight it with everything we can. This doc must have been able to see me instantly starting to beat myself up, go back over every line access/tpn hookup/dressing change we’ve had in the past couple weeks and she just put her hand on my knee and said “it’s not your fault. it’s nobody’s fault. We are dealing with bugs that are WAY smarter than us right now – look at how many bugs have become resistant to certain antibiotics. We are dealing with a fungus that loves sugar. In a plastic sugary pool (the TPN going into Kendall’s line every day is 20% sugar). Eventually even in the most sterile of environments, yeast is gonna figure out where the good stuff is and go set up camp.” And I don’t know why – but I needed to hear that right at that moment. not that it makes it any better or easier. Lots of kids on TPN never get a single yeast blood infection. It looks from initial reports like this is the exact same bug she had in February, so they will more than likely be doing more checking in more hiding spots to see where there might be a rogue camp of fungus balls just waiting for the anti-fungals to stop before dashing off to the sugar pool again and sowing more wild
oats, errrr, yeast.
I have not heard how this mornings labs look yet, but right now she is not septic. That could change as her body continues to try to fight these invaders. I know right now its going to be a very long day, and I pray she is able to just sleep as comfortably as possible for most of it.
I’ll try to update if I get any other news. We appreciate the prayers and positive thoughts you are all sending our way. They are being felt most definitely! Please keep the other big girls and Ben in your thoughts too. Kealey was starting to get sick herself yesterday morning when we had to leave to drive up here, and she is having a hard time understanding why I can’t just bring kendall back home so we can all be together for the dance competition this weekend. Or to finish her pocket person project for school. And i FINALLY FINALLY got picked as one of her class chaperones for the field trip on Monday to the Arboretum, and I know she thinks that I will not make it for any of that stuff. But she obviously doesn’t understand the love of a mommy. Because i will do EVERYTHING in my power to be in 793 different places at the same time. It’s a skill I have spent a lifetime perfecting (as anyone who has ever had to wait on me to do anything/finish something/be somewhere can attest to!) Somehow I will find a way to be the comfort that my very sick KQ needs, and still be the mommy that the others miss so badly during times like this. Somehow we will get through this hospitalization and sickness just like we have the others. Because I know we don’t ever do it alone.
I am beyond exhausted at this moment and think I stopped making sense a few paragraphs back (if, in fact, i ever did make any kind of sense at all)! I’ll have to take a few pictures of this hugemongous room we are in and post them later! Till then – as Kaylen says –
T and the 4th K.