8 hour cycles.

This is what our life has become – 8 hour cycles.

I know I should have updated way before this – but now I am time crunched and can’t get into all the details like i’d like to – so here’s a few quick bullet points to hopefully help answer some of the questions you all have about what’s going on with miss Kendall Quinn.

Our lives are in 8 hour cycles because that is Kendall’s IV antibiotic dosing routine right now. I am starting to see why doctors try to avoid sending kids home on IV antibiotics because what is easy for nurses in the hospital on a 24 hour care routine is MUCH harder in real life actuality. (and to all my friends who do this on a very routine basis – please know I am not complaining – just “processing”! )

So kind of a chronological timeline/stream of consciousness spewing from Friday to today:

  • IMG_1822 Friday morning we got confirmation from the Milwaukee lab that Kendall’s cultures from there were growing the same strange bug as the lab in Naperville – Pantoea Agglomerans. You can google it if you want – you won’t find a whole lot! It’s a gram negative bug that is plant based, and seems to only affect severely immunocompromised people in hospital settings (although if you happened to have a nasty run in with a thorny bush or say a tree limb impaled through a body part, and then you later developed an infection in your joint or in the area of impalement, it would very likely be a P. Agglomerans infection). In short – they have no idea how Kendall got this bug, but bets are on a TPN contaminant that may or may not have made other kids sick, but in her “still recovering from a crappy spring full of blood infections and sepsis’” immunocompromised state, she got sick from it.
  • The good news about this bug, is that it tends to play nice with the right antibiotic. We had luckily added in one of the “right ones” the day after she was admitted, and that’s why we saw such rapid improvement. The problem though was that she was on three different antibiotics with a crazy dosing schedule, and the team all knew we could not go home and sustain that level of care in our home setting.
  • I am not good at math or explaining things like this but here’s part of the problem: Kendall has what is called a “double lumen” PICC line in.  The point of this being that since her TPN (food/fluids) runs for 16 hours of the day, instead of stopping and starting that all the time, we should in theory be able to use the other “lumen” or end to hook up to her antibiotics. Except that for Kendall, her other lumen (the white one) has never worked very well. It’s a good bit of a wrist workout to push a flush (saline that we use to clear the line out), and you NEVER get blood return on it. You may recall that we had this same exact problem with her LAST PICC line in April, that was placed in essentially the same spot as this one. We had to “TPA” it – which is a long name of a medicine used to break up blood clots. We don’t know if Kendall is clotting off this line (or the last one), or if its “going positional” – meaning that the ending of the plastic tubing that threads up her arm and ends near her heart is getting “sucked into” or embedded in the wall of the vein somehow, giving us the illusion of trouble/pressure/etc. It is supremely frustrating to have issues with this lumen, but given the fact that Kendall has already had a few issues finding access for central lines, and we don’t know how likely she is going to need those access spots, it’s not the kind of thing we want to go ripping out a line for.
  • SO – we were trying to juggle getting SOME antibiotic coverage through that lazy lumen, with the other lumen having a “tri-fuse” on it so we could run her TPN/lipids/antibiotics in the hospital. We had a separate pump for each lumen dedicated solely to the antibiotics, and our nurses had a handy little chart by which they knew exactly which med was going into which lumen at which time on which pump. This worked great with round the clock care. There are obvious problems when trying to translate this into the home setting. Namely, I am not that organized, we don’t have that many pumps, and we don’t have round the clock help!
  • So to consolidate things and get us home in time for the holiday weekend, our docs consulted with ID again, they decided to order her this fancy-dancy super supreme antibiotic that they don’t like to use because its a “big gun” and you want to save the big guns for the big battles. BUT – since the lab had never even had to identify the bug that Kendall is growing before, and there isn’t a whole lot of literature out there to say even what “normal” kids would do with this bug (let alone Kendall who writes her own medical journals), they felt it was our best bet for getting home.
  • They sent us home based on how well Kendall looked clinically. We were all IMG_1825 waiting for and even expecting the “fallout crash” to occur – and it never did. At least not there. It was very hard to keep a kid there who really looked GREAT, especially given what she was dealing with. No one could figure it out. I admit I was a little wary of a few smallish things she was doing, but i was able to convince myself I was just on edge and they probably meant nothing (things like her sleeping HR jumped from its normal of 90’s up to the 120’s, she was having a few more apneas than she normally did, her coloring all of a sudden went from pale to ghostly, she got very irritable, etc. – all pretty much nothing on their own, but they had my antenna up definitely.)
  • our AMAZINGLY AWESOME home pharmacy ThriveRx got the orders from our docs for the new meds around 1 pm on Friday afternoon, and we got word at 3 that they would have it all ready for us that nite and we could safely be discharged to home. So we packed up, said goodbye to our nurses for a couple weeks, and off we went!
  • Kendall CONKED in the car, slept almost the whole way home, and was ready to PLAY by the time we got her all unloaded/unhooked/etc. She rode around in the Barbie Jeep with her sister driving and Ben and I just sat on the porch with tears in our eyes thanking God that she got through another one, that we were home, together as a family.
  • our delivery of meds was driven from Ohio (where our pharmacy is) through the nite by an old man who arrived at our house at 11":45 pm. This kind of dedication to our family, and keeping our family HOME and TOGETHER is exactly why our pharmacy is in Ohio. Because that is where they are based. They are the best!!! Ben hooked up Kendall’s antibiotic at midnite, it ran until 1 am, he unhooked her and crashed for a couple hours. I, on the other hand, had crashed at about 9, and did not hear a THING until the next morning. Ben had checked on Kendall at around 4 and she was sleeping peacefully. Because she gets hooked up to so much in the hospital, we usually try to give her a break when she first comes home if we think all is well. Which we did. Which is why we didn’t have any warning of what was coming the next morning.
  • Saturday morning I was jolted awake by the unmistakable scream of a Kendall in a ton of pain. I ran in there to see her puking/gagging/choking (she can’t really vomit because her stomach is wrapped around her esophagus, a surgery she had when she was 7 months old as a way to try to keep food in her stomach and out of her lungs) – so watching her body fight with itself to try to puke past this knot in her stomach is not for the faint of heart. I turned her on her side and started trying to relieve the pressure by opening up her stomach ports, checking for anything obvious to signal why she was puking, assess what else was going on – and then I felt her head. I instantly knew something was very wrong. Ben was in there by this point and he started helping sort out all the wires and such from around Kendall’s body, hooking her back up to the pulse ox monitor, catching more puke, which was actually nothing more than bloody bile – looking back on it now it seems like the opening scene to an episode of ER. It does amaze me how Ben and I have learned how to do the “Kendall dance” together, both taking a part of her care, both moving around each other to work on the different parts of her little body, handing a flush here, tape there, syringes over there.
  • The picture was that Kendall had a fever of 103.5, probably prompting the puking, was pouring the same bloody bile she was trying to puke up out into her G-tube drainage bag, was rather limp, very tachypnic (breathing about 65 times a minute), was having a hard time maintaining her oxygen saturations above 88 percent, heartrates in the 190’s just laying in her bed – a very bad and sudden crash. I was racing through my mind what it could all mean and trying to formulate a plan  – ANY plan – that didn’t involve packing her back up and driving to milwaukee less than 12 hours after we had pulled in the driveway. Not feeling so super hot myself (thanks to the less than stellar sleep that one gets in the hospital, and not having been able to sneak away for real food at all this trip), I decided to shove her full of tylenol suppositories (because with what was coming out of her g-tube, it was quite obvious that we weren’t going to get a WHOLE lot of absorption through her gut even if I could have figured out a way to push a bunch of tylenol in past all the pressure pushing stuff back out). Because in my mind – if her fever responded to tylenol, it was a virus, and if it didn’t, she was either septic or fungemic again.
  • An hour after all of that chaos, her temp was up to 105.2, and i knew we had to do something else. I had already called milwaukee and spoken with our awesome resident (I know you’re shocked to hear those two words together come out of my mouth in a non-sarcastic way) – we pored back over her lab results from the day before, double checked on all her cultures to see if anything new had grown, and basically ended up shrugging our shoulders and hoping the attending had a better plan. Luckily she did.
  • We were sent to Edwards hospital (the local peds ER), where she had already called ahead, and they were going to re-draw all cultures, check her urine for a UTI, do a chest X-ray, and re-start two IV meds that we had discontinued earlier in the week to get broader coverage over ANYTHING that might be growing.
  • After a couple hours in the ER getting IV fluids bolused into her (run at a fast rate), and the Vanco and Micafungin doses done – she had definitely improved with much less work of breathing (we had had her on 2L of oxygen when we took her in, which is the max we can run at home, and even that wasn’t helping her out a whole lot respiratory wise), her fever finally responded to the horse doses of tylenol and ibuprofen that we were pushing in to her J-tube, and overall we all felt much better about her clinical status. The decision was made with Milwaukee to let us go home, with STRICT orders to come right back if she started being off again at all.
  • A few hours after we got home, Edwards called back and said that since our pharmacy would not be able to get meds to us until much later in the nite (3 am), that we needed to come back to the ER in order to have her next dose of antibiotics run, but that we could just zip in and zip out with that as our only mission. Done and done. Unfortunately, “zippy” and “ER” are just not two words that EVER go together, but all in all, sitting in the ER for another 2.5 hours SURE beat having to stay there overnite, or a couple overnites, or a helicopter ride up to Wisconsin.
  • We are very very very blessed to have  a really good team of docs who “get” Kendall, and who can communicate to a whole new IMG_1836 set of docs who have no idea what to do with Kendall! our Pharmacy company REALLY stepped up to the plate also to make her new meds and get them sent out with a driver from OH to our house ASAP – this also played greatly into the doctors’ decision to let us stay at home. There was really nothing else that they would do for her on the floor at Edwards that we couldn’t do at home, so unless she needed PICU level care, we could comfortably manage her care at home.
  • Unfortunately – all of this led to what we are now dealing with – 8 hour cycles. I have a spreadsheet on the fridge detailing what medicine has to be run at what time on which lumen for how long. Added in to this is her TPN schedule, and the timing of when to take the right med out of the fridge so it warms up in time to be run. Again – not complaining – because I will GLADLY give us sleep and any other coherent thoughts except “red lumen/white lumen/vanco/mica/mero” in order to all be home as a family this week!
  • Overall – Kendall is hanging in there. We have not gotten any word if the new cultures from yesterday are growing anything, but given Kendall’s drastically improved response to SOMETHING we changed yesterday, I’d say that we managed to cover whatever was still growing to make her so sick yesterday morning. My bet is on the yeast again, just cause it seems to be the soup du jour for little miss. BUT – she did grow out a gram positive bug last week, and we had only stopped the vanco right before we left the hospital on friday. So really – it could be either. or both. Leave it to her to have both!
  • She is not currently septic, and hopefully with the right meds on board she will avoid becoming so. If she does go septic (basically another crash like yesterday), we will be heading up to milwaukee as fast as we can, or possibly going to Edwards to stabilize and then be transported depending on her needed level of care.  Her labs looked about as crappy as they can without actually being considered “septic” (it’s a semi-subjective thing, based on how the doc interprets certain clinical impressions plus the lab results) – so I personally don’t have a whole lot of warm fuzzies about her ability to handle another crash like yesterday without some big issues. BUT – I have faith that she is more stable on the treatments we started yesterday, so I’m shoving all of that to the back of my mind and hopefully ignoring it.

And that’s about all I have to say about that right now. She looks very very tired as you would expect of someone who has fought with all they had against a crazy bug (or bugS) all week. She is weak and nauseated in a way that her usual meds are hardly touching (or, as I suspect, her gut just isn’t absorbing them properly right now, or in enough time to get her relief during the worst times). That is probably the hardest thing to see – watching her want to play with sissies, but not being able to climb the stairs after them, or keep up with them running around the house, or want so badly to enjoy the ice cream we are all having, but pushing it away in anger/frustration/pain after just a  small lick. Hoping her docs have some other ideas about ways to relieve that while she has to be on this insane amount of medication. If you’ve ever been on even one antibiotic and had the upset stomach that goes along with that – times that by about 50 and you’ll have an idea of the amount of nausea and pain Kendall is in, with a gut that is already pretty much non-functional from a mechanical standpoint, add in the slowdown that comes when you’re sick, and then the chaos that ensues when you have a bunch of antibiotics coursing through your system – bleck. It makes me nauseous just to think about it!

Now we just wait to see if anything else grows from yesterday’s cultures. IMG_1839 The plan right now is to keep her covered with everything through this coming week, stop everything on Saturday, and hope hope hope that she is fine/better/healthy when all is said and done. I think if we can get the tummy pain under control, she’ll have a much better week and be able to get the real rest she needs in order to get back her strength to let her bone marrow do its job and grow new cells to be able to fight off infections again. Circle of life and all that jazz. She’s in a bad cycle right now, but we are SO grateful that she is doing so well with it. She is an amazing little fighter. I know that if our doctors didn’t have so much faith in our ability to handle all of her issues at home and know the signs of her taking a turn downward, she would NOT be at home right now.

As always – thank you all SO VERY MUCH for all the amazing support you are to our family – the prayers and meals and thoughtful cards, emails, facebook message – they all truly mean so much and I am so sorry that I am not capable of writing a thank you note to every one of you. I want you to all know that we ARE so very thankful, and could not survive without you, our support system.

I’ll try to update a little more regularly this week. There’s more coming up in the next couple weeks that all deserves its own post! Does anyone know where the stop button is for this crazy carousel of life? I’d like to slow it down for just a few days please!!!

Hope you all have a very awesome holiday weekend (in the states at least  – to our international friends – carry on with life as usual – but i hope its good too!!)

love,

IMG_1841

Terra, Ben, and the K-crew

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