Head to Toe, Part 2.

So when I left off part 1, I had just crashed on the couch and Kendall was stable-ish.

She continued to need high doses of the pressers (medications that work to keep your heart pumping and to keep your veins constricted enough to hopefully keep the blood/fluid in the veins and out of your tissues), and was receiving multiple units of FFP and cryo throughout that night. FFP and cryo are blood products that are specific components of your blood designed to help/aid in situations like DIC.

I was awake by 6 – just not able to sleep, too much activity going on, too worried about everything. We met the doctor who i will forever be grateful to for saving my baby that morning. He told me she was better, but nowhere near out of the woods. He explained to me that the septic shock had sent Kendall’s organs and vessels into a tailspin and that all the medications were working to try to keep her heart effectively beating and stop pushing everything out to her tissues. Her labs were “a mess”. She was in severe lactic acidosis which was causing some respiratory issues (for those who know, her levels were in the 40’s.). Everything we were trying to fix was just making something else worse. Dr. S did an amazing job of explaining to me what i needed to know, but making sure not to overwhelm me with things I didn’t need to know right then.

It was blatantly obvious that Kendall’s already crappy veins were not going to handle the stress of having all the multiples lines running into them. We had bi-fuses and tri-fuses everywhere, and still were having trouble having enough spots to run in all the life-saving meds, antibiotics, fluids, etc that she needed right then and there. Kendall was put on the schedule to go have a PICC line placed, possibly two. We were unable to touch her central line at that time because it had a quad fuse (four lines) lumen coming out of it running the pressers and steroids that were all that was keeping her semi-stable. Her arterial line was precarious, but oh so necessary, and only certain things were able to be run into that line. They were also running constant blood pressures off of that line because we needed to make sure the meds were doing their job. Another value on the monitors that we’ve been watching all week has been her CVP – central venous pressure. I don’t fully understand why our doctor was so worried/upset over this number, but i know he was. It somehow indicates the backup of blood in the liver because the heart is getting overstressed, blah blah blah. Anyways, we were hoping for a 7 – that is apparently “normal” in most normal folks. We were in the 100’s.

anyways – going down for a PICC line was a necessity. By this time we were having to use some strong sedatives and pain meds to keep Kendall in a calmish state, but trying to balance that with not suppressing her vitals any further than needed. When they were about to take her back for the PICC she was starting to hallucinate and kept telling me and her nurses to “get dat! get dat sing mommy! it’s right derrr!!!!!” reaching for some imaginary thing in the air above her. She was talking very strangely – and by that I don’t mean what she was talking about, but rather how her voice was. It was like there was so much pressure everywhere, she could only use single syllables in place of words. Luckily once she came upstairs from the PICC procedure, she was mostly conked out for the afternoon. But had started to be oh so very puffy. Almost unrecognizable.

Throughout this afternoon and evening, her doctor kept coming in her room, checking the big lab/trends board, pacing, thoughtfully pondering the numbers on the screen, then pacing back out of her room. Things were changed and tweaked, labs were being constantly ordered and then more things were tweaked based on those results. This board thing is amazing. It spoiled me. It is a 42 in flat screen TV that is touch screen. So you can tell it you want to see all the lab results for the last 24 hours, or you want to read the culture reports, or you want to see a graph of her fever curve and I’s and O’s (ins and outs, or how her fluid status is). For a micromanaging lab hoarder like myself – it was a dream come true. I was able to see within minutes how bad her labs were, or what the doc was worried about or if her acidosis was resolving. (They told me later i’m not supposed to actually touch it, but since I managed to not break it – yet – they were willing to overlook it!)

Kendall ended up needing a full blood (PRBC) transfusion at this point, and ended up getting two full units. Considering the absolute FIGHT we had to go through to get Kendall one a few weeks ago, I knew things must be pretty bad. however, I did find it mildly humorous that the doc referenced “the anti-transfusion movement” going on at our hospital. He was seriously just an amazing doctor – he could make me laugh or at least smirk even while telling me absolutely horrible news about my child and her medical status.

I know this is kind of getting disconnected here – but it was a long crazy week! By that afternoon, Ben was up there with me, and the girls had gone to a friends house, all together, which was a huge relief. I remember that we were both exhausted and decided we would take turns being up with her and sleeping. I took the first shift, mostly because I could not keep my eyes off of her and the monitor. My mom sense was still on extreme high alert, and even though I was exhausted i could NOT let myself rest. At around 2 I think I finally came and crashed on the couch again, and Ben got up and stood bedside with her for a few hours. I know I could hear her all night whimpering and thinking – I don’t think she’s breathing right – but I could hear Ben trying to get her morphine so I thought maybe he was on the right path. i was back up again at 6:30 and saw that he had made her wear her oxygen again. In spite of that, and at 2 Liters of support, her saturation numbers were crappy. She was in pain, grunting and struggling to breathe (even though it was hard to tell because she was so pudgy from all the fluids), and very mad at the cannula on her face. she kept tearing it off and would drop to the low 70’s for her sats. The doctor and ANP’s (nurse practitioners, huge in Kendall’s care here in the PICU) were in and listening to her, and all commenting on how clear and fine she sounded, but could not figure out her crappy sats. After an hour or so of this and watching her decline so quickly, a STAT chest x-ray was ordered. Within fifteen minutes of the x-ray machine pulling out of our room, they were in with a machine setting up to start Kendall on bi-pap support.  This all took a while to actually get set up, but by the time they did, Kendall was having none of the huge mask on her face. she didn’t have a ton of strength left to fight us, but she was crying which was making the pressure monitors go nuts, and her sat monitors go nuts from dropping. The respiratory tech was in here constantly trying to mess with the settings, turning this, tweaking that – nothing was helping. Morphine and Ativan were given, and the crying stopped, but she was still struggling for breath.

Dr. S came in with the whole team and explained to us that she was still working very hard, sending herself into a respiratory alkalosis (worse than the metabolic/lactic acidosis we were still struggling to correct), her blood gases (which i still don’t have a good working knowledge of what’s what) were crapping out, and that we probably needed to discuss intubation. We came up with a plan to give her an hour to prove to us she could turn it around.

I think I knew in my mind we were headed there. His words did not come as a surprise to me, but rather almost a relief. I was watching her work so very hard to breathe, and I was nervous and i was scared that soon there would be nothing left for her heart and lungs to do. I’ve seen this kid deal with pneumonia after pneumonia, i’ve watched her choke on her food and have scary moments. I’ve watched her go slowly septic and look pretty gosh darn sick. But I have never stood there helplessly watching her try to slip away from us, unable to do anything about it. I felt confident in the plan to give her a chance though, because if anyone could pull herself out a tailspin, it would be kendall. Our nurse Rachel was in there the whole hour and fifteen minutes of the “trial”, her concern for Kendall evident on her face.

And finally, i saw the team gathering outside her door and I knew. I knew what the answer would be.

“I think it’s time we give her the break she needs. It’s time to intubate her.”

to be continued…

Keepin’ On.

It’s been a LONG week. In many ways, I cannot believe it’s only been a WEEK since all this craziness started, and in other ways, i feel like i’ve lost sense of time. And I know for people who are used to staying endless weeks inpatient that that might seem overdramatic, but keep in mind that i lose track of time on a good day, so…there’s the grain of salt! Anyways – I am currently hanging with the girls at a hotel near the hospital. The Ronald McDonald house is IMG_4594perpetually too full for us to get into – in fact i’m not sure they EVER kick anyone out of that one….But I digress.

It was  wonderful to be with them again last nite for the first time since I waved goodbye to them from the ambulance pulling out of Edwards on Monday afternoon. We were able to grab dinner, go swimming, and i got to sleep in a real bed! Granted I got kicked in the kidneys all night by Kaylen – but at least I was on one contiguous surface that was MUCH softer than a vinyl covered wooden box. Today Kendall is in the hospital mostly because she needs her medications still, and they could not be delivered to our house before tomorrow. Also, there was only one doc who thought giving us the boot today was a smart idea, but unfortunately he is the one making the call. Everyone else thinks even leaving tomorrow is kind of pushing it, as do I, but I also don’t think it’s smart to hang around the hospital much longer where she risks picking up some other chaos to add to her mix! So we are pulling some more labs today, possibly doing an ultrasound to make sure the third spacing (fluid retention) and inflammation are going down, and in general just trying to help fine tune things before going home to continue her recovery.

Yesterday if you are on FB, you saw me allude to the craziness of getting little missy’s PICC placed.IMG_4591 It started when we got down to the IR suite, our anesthesiologist had to run to an emergency case, so Kendall and I just chilled on her bed taking crazy pictures and “hiding” from all the nurses behind the curtains. This ended up being a good thing though because it caused the resident to ask us a casual question which led to the attending needing to go review all of Kendall’s previous vein studies to see where he thought he might be able to place a PICC. As I feared, her spots for PICCs are becoming slim pickings. The night before, when she had lost her two peripherals placed in surgery, they paged transport (helicopter team) to come place another one. When they quickly blew through two more in “creative” spots, I knew we were in trouble. After finding one last very tenuous vein (on the inner crook of her elbow – NOT a fun spot to have an IV for an adult who knows how to keep their arm still, and beyond not fun for a kid who doesn’t understand how to not use her right arm!), the nurse looked at me and said we have to come up with a better plan for keeping peripheral access, because she has almost none. Now granted, right now, everything in her body is weak, and we know she’s third-spacing, so we know her veins are just “weak” (meaning they aren’t able to keep a needle in them, or handle the amount of fluid and medicine we need to get through them). But plain and simple, we need to go a LONG LONG LONG time before she needs to use peripheral veins again to give them all a time to heal. Hearing that her peripheral central access was also becoming limited was disheartening.

I’ll try to explain better why this is a bad thing in another post but for now – just know that it was not good news. Anyways – when she came out of surgery for the PICC placement, they took her to the wrong floor, and told me to go a different floor – but eventually (after having to get paged overhead through the whole hospital…so embarrassing) we met in the right recovery room! They were trying to get pain meds into her peripheral, and could not push them in, and the anesthesiologist said it was VERY tricky trying to keep her under because her veinous access was so terrible and he was having to push it slower than she needed…blahhh. I am glad it was THIs particular doctor on because, a. i just love him and his personality, and b. he’s worked with kendall before and knew instantly how to handle her different issues. It was kind of tense for a couple minutes with her needing more meds and no one having orders to use her new PICC line yet (a radiologist has to read the x-ray, report that its in place, tell the surgeon this, and the surgeon has to write orders for use) – but anesthesia decided to just push it in the picc and get orders later. If it wasn’t so chaotic it would have been almost comical. but it was VERY stressful at the moment because i just wanted kendall to feel better. She’s already been through so much, and knowing she was in a ton of pain – so hard to watch.

Anyways – IMG_4577 the PICC is in place, she is getting her actual nutrition again (we could only run dextrose fluids for the last three days because TPN would have killed her PIV’s), got to see her daddy and sissies again, got a good scrubby bath, i got through the HOT MESS of her tangly weave – and in essence – she’s lookin pretty good! I am not real happy with how her labs are looking, even though i understand WHY they still look crappy…it just makes me sad for how bad she must still feel, in spite of her brave game face she always plasters on when her sisters are around!

So we will continue letting her body heal up and recover from this week, and will hopefully be all in our own beds by tomorrow night!

To those who emailed me for the list – sorry – i WILL get back to you very soon! Thank you so much for your willingness to help!

thank you for the prayers and your continual support of our family!

Ok the girls are bugging me to go swimming again…hope you all have a wonderful weekend!

love,

 

Terra, Ben and the 4 Special k’s.

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

A Good Weekend.

This will just be a quick one since it is way too late on Sunday nite and I have to be up way too early tomorrow morning!

It was very surreal to not be with Kendall for this long while she’s in the hospital. I  left the hospital very soon after her surgery on Friday afternoon to remove the broviac, and will not be heading back up until tomorrow afternoon, after the worlds funnest trip to the Arboretum. It is hard to not be there to ask the nurses the questions myself, to gauge her pain levels for my own mommy radar, to see her labs with my own eyes. It is equally as hard to walk into her bedroom without her being there. To hear the sound of her alarms without them actually sounding. Usually you can tell its been a rough nite by the amount of “paraphernalia” that is strewn about her room. This sickness was no exception. The thermometers, the pulse ox probes, the blankets, the syringes that once had tylenol in them – all over the room when i walked in. It is weird to be “partially” a family – knowing that 1/6th of us is in a bed in a room in a hospital in another state 3 hours away from where we are.

Tonite we are together as that partial family. Thanks to my wonderful family for stepping up to help us out in not leaving Kendall alone in that room. I cannot thank my wonderful amazing Aunt Margie enough for dropping her own plans today and going to the hospital so that Ben was able to come home and have dinner with us together as a family. She had to endure the eventual blowing of one of Kendall’s IV’s and the subsequent torture of the transport team having to place another one in her foot without the benefit of sedation! That is torturous even to my soul that has had to deal with a LOT of torturous procedures on my baby – I imagine that its even harder when you’re not used to it! And then to my daddy who is so willing to go sleep on the wooden boxes and take a day off of work so that I can go to Kealey’s fieldtrip, and be with the girls just that much longer.

I cannot thank you enough for your sacrifices – and to everyone else who was/is involved in this crazy shifting of schedules that happens when Kendall throws our world upside down. I cannot even hardly speculate when we will be home from this visit. Most of that is simply because I haven’t been there to gauge how she is doing against the doctors’ thoughts as they try to interpret her labs and her “level of sickness” and our ability to handle her care at home again.

So that’s what I know tonite. Not much in the way of details – but that overall she is doing well. she is still playful and interactive (as long as you aren’t acting like you might be even THINKING about touching or looking at or saying the word “IV”), Ben did a great job of working with her O2 to be able to wean her down and then off of it completely this afternoon before he left, and her feeds are still going mostly well. There is really no other explanation for how well she is doing than all of your prayers.

They (docs) say there is still a long road to go, but at least we are making good forward progress. I miss her. It has been SO great to be with the big girls, and I think they were definitely in need of some “stress-free mommy” time. We were able to just pick up and go so many times over the past few days, something that never happens with kendall. I have loved soaking up time with each of them. I will miss them as I head back up to milwaukee for an indeterminate amount of time.

Thank you so much for your prayers, and love, and support. We could not travel this road without each and every one of you who is such a big part of our story. I pray that you are all loved and held tonite, whatever your circumstances are.

More from crazyland tomorrow….

 

terra

Goodbye February!

I am NOT sad to see February go!

I normally am in love with all things February – as it is my favorite holiday time (Valentines), Kealey’s birthday, lots of good clearance deals at Target…

but this year it was just hit after hit it feels like. It started on the 1st with the blizzard, then freezing temps, then Kendall’s gut shutting down – and it just snowballed from there. It has come to a close with losing another beautiful mito angel on Friday night, whose mom I had the privilege of “meeting” through this blog. My heart aches for this family and all that they must be going through right now. Little Maggie was a fighter til the very end. Please pray for the Agnew family as they move forward through days and nights so painful I can’t even stand to think about it.

And on the way home last nite from St. Louis through what apparently turned into a tornado (horrifically blinding thunder/lightning/rainstorm), I was apparently channeling Denny Hamlin and got pulled over for going SLIGHTLY over the reckless driving speed limit. Perfect. At least I got to keep my license (because in our crazy state they like to keep your license as bond until you show up in court or pay your ticket fine. which is normally fine with me – its not like having a license in your pocket makes your car start. But it can be a pain when you need to go on a plane/get through security in an airport. Not that that’s ever happened to me. Because, you know, I never get tickets.) But we made it home, and I think Kealey had a great time for her birthday – just getting some good quality mommy time in. We had so much fun with Ben’s GPS – making the lady with the funny accent say “recalculating” by driving around the drive-thru and purposefully getting off on the wrong exits is apparently hysterical when you’re 9. whatever it takes, right?

And to top it all off today because it just wouldn’t be a day around here without SOME drama, Kendall’s PICC line is not giving us blood return. We needed to pull a bunch of blood today for labwork to gauge how she’s doing on the tpn as well as check a few other things that were still kind of “hanging” when they gave us the boot out of the big house, and our pharmacy nurse took one look at kendall’s very bruised up and still swollen little limbs and said there was “no way” she was going to even attempt to place a peripheral line to pull the labs from. I am making this all sound ever so much simpler than it was in actuality. It was about a four hour ordeal trying to deal with a very cranky and tired kendall (because said nurse was 2 hours late from the time we thought she would be there), who was just DONE being poked/prodded/touched/looked at, and then trying different things from this nurse (like hep-locking the lines for 30 minutes, different flushes, etc.), and calling three or four different doctors to try to get an opinion from SOMEONE on what we should do. We cannot get more TPN made from the pharmacy until we know what her labs look like, but we cannot run labs if we can’t get any blood from her! It was the kind of stress that just sat right between my shoulder blades. Add to this the fact that our main nurse who helps with everything related to Kendall’s port (now picc) is out of the country for the entire month, so the LPN we have on M/W/F cannot do a THING to help out with the crazy med/tpn schedule. Did I mention Ben is out of town until next Sunday? Ugh – I am overwhelmed by my own life – I don’t really know how some of you manage to hang in there with me through your own lives PLUS ours.

*and for those who are wondering – the plan right now is to “TPA the lumens” – meaning we put this super fun clot busting medicine in the line, leave it for an hour, and hope that it has completely obliterated any blood/tissue/debris of unknown origin that is blocking the opening of the catheter (IV/picc). Normally this requires going to the ER. But we have a nurse who likes to keep sick little girls away from ER’s. So we are praying that this works!

Some day I will be able to give back – in some way. Some day I will be able to properly thank those of you who have helped clean up this house, brought us meals, brought me coffee or coke or suppositories (well those were for Kendall. but i may be tempted by a caffeine suppository…), or just listened to me rant and rave and break down crying. If you have in any way given us anything, or supported us somehow – even with just your prayers – I hope that you know how very extremely grateful we are. I wish I could give all of you a huge hug, look you in the eyes and tell you “thank you” from the bottom of my heart. I am horrible at thank you notes (PS – thank you to everyone who gave us wedding gifts whose last name started with N-Z – I apparently forgot to mail the second half of thank you cards!) – and besides that major Tact Deficiency, I am just really overwhelmed at the moment. I don’t know who this person is pretending to be me – because the me I know is NEVER overwhelmed and can hold it together at all times through all circumstances. I hope she comes back soon. Maybe she’s just off finding caffeine suppositories.

I should not blog at midnite I am realizing. It doesn’t make a whole lot of sense.

anyways – goodbye February. You will not be missed. And next year – we are preparing for you. in fact, i think we will skip you altogether. You had your good days definitely – but overall – you can take your snow and flu bugs and other sicknesses and freeze yourself!

March – be kind please!

Ok – I think I have officially lost it now. I am talking to the calendar…

SEND MORE SANITY/CAFFEINE/SLEEP!!!!

love and hugs –

me.

Making the Turn.

Little Warrior Princess is definitely making the turn back towards the good side today!

Actually, in a weird way, she started making the turn last nite with all of the INSANE IV craziness, because they finally got off their butts and ordered something stronger than tylenol for this kid! And once we were able to help her get on top of that pain – off she has gone. As i had no doubt she would!

So – backing up a little bit.kendallhospital4

Actually – let me start with a little  “glossary of terms”. My darling father in law ever so gently reminded me this morning that I need to talk slow and not use so many medical terms when i am giving very important updates! (and in case you are wondering, yes i really do actually use these terms with our residents. Not so much the attendings, because they don’t usually need to be put in their place as much as residents. But it’s just ever so much fun to watch a residents face struggle to remember the vocab terminology of the words I am using!)

In order to understand today’s update better, you will need to familiarize yourself with these terms:

P-IV = peripheral IV line. Also sometimes just referred to as “a peripheral”.  This is a line(iv) that sticks into your arm or your hand or your foot or wherever the nurses are lucky enough to find a small vein that won’t blow up the second you start putting fluids into it. Most people when they “get iv’s” are getting a PIV. Kendall has struggled her entire life with keeping PIV’s, which is part of why we went with the port last month, which is a CVL – central venous line. I am using PIV here to differentiate between the kind of IV we HAD, and the kind we need to GET.

CVL – the central line. This is a more permanent kind of IV that is tunneled under the skin on the chest, with an access end coming out of a small hole, or in our case, a “medi-port” under the skin that we access with a special needle. This CVL goes into a large vein that dumps directly above the heart, so you can put a LOT of good stuff in there as fast as you need it usually. This is an important differentiation because it will explain why Sunday and Monday were crazy around here in that we did NOT have a good large well in which to dump the many things we were trying to dump into Kendall.

IR – Interventional Radiology. This is where Kendall typically goes to get her G-J tube changed, as it is essentially a video camera x-ray. If a regular x-ray is like a still camera, taking a snapshot, an IR x-ray is like shooting video of that same thing – you can see things in live action. Now, how they do this is actually not so much fun. Specially if you are slightly claustrophobic and definitely sensory overloaded like Kendall is.  IR here at CHW (childrens hospital of WI, the milwaukee hospital) is kind of like a special kind of torture because they REALLY dislike actually sedating kids, or heck, even making them comfortable, before sticking them under the big scary loud video camera x-ray. Anyways – the table is equipped with about 5 velcro straps. These hold the child down on the table. The big scary camera comes RIGHT over their head, seeming like a huge 5 ton weight that may or may not fall on them at any given moment. And then the procedures are done to them – in our case, usually a long wire is threaded through Kendall’s stoma and a tube is slid down over it. Or like today, a hole is punctured in her arm, and a long flexible IV tube is threaded through her vein till it sits near her heart. Slap your grandma and bob’s your uncle, and then they’re done. That is IR.

k4hospital3 PICC – Peripherally Inserted Central Catheter. Kind of a good happy medium between the two above, a PIV and a CVL. It is a central line (that threads to your heart), through a peripheral location (your arm). Kendall has had a few PICC’s before, when we know we will need IV access at home for antibiotics. They are easily pulled out (literally just a yank and pull at the kitchen counter, WHEN the time is right I should say!), in case there were to be any re-infection from one of the bugs Kendall is hopefully fighting off right now.

Port – “Medi-port” -  Kendall’s previous CVL that we had removed in surgery on Saturday in an attempt to get rid of any leftover yeast bad guys that were still hanging out in Kendall’s bloodstream. We will probably replace her port once her 6 weeks of antibiotics are up because again, the hope will be that we only need to intermittently use Kendall’s port for fluid maintenance, and will be DONE with the TPN.

TPN – Total Parenteral Nutrition – IV food. It is a mixture of proteins (amino acids), carbs (sugar/dextrose), and fats (lipids), as well as electrolytes and other essential nutrients that can keep someone nourished even if their gut is on vacation. Kendall had to start TPN about two weeks ago when all attempts to get her gut to absorb or accept food were failing MISERABLY. It was really just a crappy time so I didn’t want to talk about it much on here. I really didn’t want to talk about it much anywhere really. It was a sad realization to see how EXTREMELY happy she was with not a drop of food in her stomach. We finally had Kendall back who had been missing for almost two months (since we were discharged on New Years Eve) – yet her gut was completely M.I.A. (that is missing in action! – sorry, couldn’t resist!) So after watching her start to have some major issues with hypoglycemia, become very weak (since she was surviving on about 6 ounces of pedialyte a day), and in general look very very puny, we took her in to Dr. Natalie to have another set of eyes on her. Dr N took one look at her and started ordering nurses to get TPN orders sent to our pharmacy. It was very surreal. But the bottom line was that the plan was to give her complete gut rest for about 3-4 days, run TPN for a week, and hopefully have kickstarted her system and call it a day. TPN can become a long-term choice for many kids whose guts have deteriorated to zero function, but for what we are hoping for with Kendall, it should be a short term solution.

 

I think that is enough for today’s vocab lesson. and I’ll have you know I started this update at 1 pm today! It is now 6:30. So it’s gonna be another long one probably!

Anyways – when we had to remove Kendall’s port on Saturday nite, we knew we would need to place a PIV. I actually had asked them to place 2, because Kendall just does not like to keep PIV’s in place. Especially running D10. But what do I know – I’m just the mom. So she came out of surgery with a BEAUTIFULLY placed PIV in her foot, but that was it. Just one. By Sunday afternoon, it was starting to get a little puffy, but she wasn’t freaking out over it yet, so we just kept our eye on it. By Monday morning we were having to really mess with rates and times of how fast we were running certain things in because we were having to stop the D10 in order to run antibiotics, putting her in a precarious situation with her sugars to begin with. But in order to get the antibiotics to go in without burning, we were having to run them over 2 hours. That’s a long time to not be getting any nutrition when you’re already sick and WELL behind the nutritional 8-ball. Well then her electrolytes and mag-phos (I am not sure what these are – minerals?) decided to start going wacky so we were having to add in an essential nutrient in between the antibiotic doses and then giving her some D10 every once in a while to try to keep her sugars up. By Monday afternoon, we were starting to call around to have another PIV placed from one of the teams that is used to placing very hard sticks in kids – PICU, NICU, ER, and transport (ambulance). Nobody had any time for us right then, but since it was still kind of limping along, we didn’t push them too hard. Or I should say our nurse didn’t push too hard. I was panicked. And sure enough, RIGHT after the saline flush for one of the antibiotics finished it blew in a big way. If you’ve ever watched a Peep blow up in a microwave….you have some picture of how her foot looked. We had a floor nurse in there then doing her best to place another PIV, and she was finding the veins, but every time she would go to push the catheter tip all the way in, it would explode the vein. Like popping a ….facial blemish. Everyone in the room was in tears by this point.

In walks the senior resident for the nite, who is a demure sweet girl I am sure, but she walks into the first level of Armageddon at that point and our nurse is screaming at her, put orders in for pain control NOW. and she goes, ummmm…..ok, how about some ibuprofen?? And I yell over my shoulder (because I am pinning Kendall down to get poked for the FOURTH time in about ten minutes) – “are you sure that’s a really good choice for a thrombocytopenic kid?” and the color drained out of dr. sr. resident’s face – “she’s thrombocytopenic??? oh mygosh i didnt read her file yet!”  Awesome. Always an advisable thing when coming into a room to make a decision where there is OBVIOUS amounts of chaos going on. (and a translation of what that means – the doctor wanted to give kendall some motrin for pain relief, which is a known blood thinner. Kendall being in DIC a few days ago meant that she already had very very low clotting factors in her blood, and giving her a blood thinning type of medication could have disastrous results, especially considering that we are poking her full of plenty of little holes for lots of blood to come exploding out of. Not a good situation.) So the nurse trying for a line has now blown four sites and we all say enough – let’s call the other teams again and see if they can come again, give her a break, and try again in an hour.

This meant we had to get SOMETHING into Kendall to counteract the major drop in sugar that we were waiting to happen after no longer getting the D10. So we started feeds of formula into her J-tube of 5cc/hr, knowing that we had to make it work for at least an hour probably (that was the time that anesthesia gave us for coming down to them to attempt to get an IV placed.). Kendall has not tolerated feeds of formula in over 2 weeks, and on the heels of a pretty nasty systemic infection, we were not sure how well it was going to go over. But – all of you our faithful prayer warriors picked up in grand fashion, and we were able to keep the formula drip going! When we got down to anesthesia, we had found a “loophole” that allowed us to give Kendall some midazolam (Versed) as both a calming agent AND pain control since she was just through the roof with major bruising now happening all over her body plus her still super puffy Microwaved Peep foot.  And THIS was when we started to see a little glimpse of Kendall. We FINALLY got on top of that pain she was in major amounts of, and she felt good enough to start fighting everything on her own!

Anesthesia also blew out another vein in her ankle, one of a very few visible veins she had left,k4hospital5 and he was TICKED. He watched the “vein explosion” happen right before his eyes, and for a man who is not used to not having things go precisely as he planned them, it was pretty eye-opening! He immediately said “you need to call IR and get a PICC now. NO ONE wil be able to place a PIV on this child!”  So in tears we all came back up to the floor (nurse, Kendall and me). And we told the sr. resident who again looked like she would rather be ANYWHERE but there in our room being told she had to start making some really hard decisions. She left to go make some phone calls and came in ten minutes later to tell me that they would probably be transferring her down to PICU so we could place a femoral line (up through her groin), or possibly one into her neck (jugular vein). As a part of rapid response team transferring her to PICU, they sent up the helicopter team to get a guidewire placed in a vein.

And that was when our angels in blue walked in. These two men walked in all confidence and pomp, but very very calming. They didn’t even turn the lights on in the room, just started asking me some questions, talking calmly with Kendall about her stickers, her mickey mouse movie, and all the while they were running their little red-light hand held ultrasound machine all over her body, looking for a good vein that was not blown to smithereens. They discussed something between themselves in the same calm tone of voice, and then began this amazing little dance where they both understood exactly what was required of themselves and each other. They repositioned me one time to “distract” Kendall’s gaze, and in some weird sleight of hand magic trick, and i swear to you it was, they somehow had placed a line, taped it to an arm board, cut a medicine cup to fit over the top of it and protect it from bumps and movement, and were cleaning up their trash and telling me to have a good nite! I was like – but aren’t you going to put an IV in??? And sure enough – they had. I was AMAZED. If I had not sat there and witnessed it myself I would swear she had always had that PIV in. I did not get a picture of it before it blew this afternoon and had to be removed, but it was EXTREMELY precariously placed going up the side of her hand near her wrist joint. Not someplace I would have ever expected a vein to be, let alone the one vein in Kendall’s body that was going to not explode all over.

So again – sr. resident walks in after they had left and signed off on things and goes “oh my gosh i have spent the past two hours SO NEAR TEARS because this has just been brutal!” I was like – you wuss! you weren’t even in here pinning her down! If you think that is brutal you should try living with this kid in the hospital  because that is what happens just about EVERY SINGLE TIME we try to place a PIV!!!” Now granted, we have not really ever been in THAT precarious of a position, where we could not start feeds to keep her sugars/fluids up, we were in desperate need of getting antibiotics in, and who knows what the next crazy electrolyte was going to be that we had to run on an emergency basis? We were probably within easily 15 minutes of needing serious emergency intervention. God is good, and we were SO thankful for all of you who were faithfully praying when I put the news out on Facebook that we needed a lot of help and a lot of prayer!

Now – why were we messing with PIV’s in the first place? Well, because we don’t want to just give any lingering bad guys a new plastic home to turn into their hideout and procreate and take over her body again. The best way to do this is to wait for “3 clears” – or three negative cultures in a row. Last nite we were tentatively at 1 1/2 days of clear cultures. We had hoped to make it to Wednesday with a PIV so that we could give her the clearest shot at remaining infection free, but last nite everyone realized that “the ideal world” is very far removed from “kendall’s world”, and that we would need to come up with Plan B.

Which led us to today where GI attending’s assessment was “put the #$^&( PICC in”, and ID’s assessment was “we need three #(*@%(#) days of clear cultures to replace her port” and I was like – we could have replaced the port tomorrow?!?!?! Because that was NOT how i first understood it…

anyways – it was a crazy conversation. Semi-frustrating. Because we are not going to put a PICC in her one day and then go get a port in the next day. I mean, you COULD do that. It’s just not a very logical seeming choice I guess. So – I said, “let’s compromise. How about if we get a double lumen PICC in place today, leave that for the 6 weeks of antibiotics at home, hopefully wean her off the TPN in that time, and then when we come up to reassess infection status after that, we get the port put back in for hopefully WAY less access than what we are doing right now?” Surprisingly, everybody was in love with that plan. (I’m so glad we are paying these doctors to agree with my plans!)

One last vocab word – double-lumen PICC – a PICC line with two little “hubs”. The point of this is that we will be able to run her TPN along with her antibiotics and hopefully be able to get a little more sleep at nite since we won’t have to be waking up to check if her sugars are staying up through a two hour antibiotic infusion every few hours. At least, that is the goal. Who knows how it’s actually going to turn out, because, after all, this is Kendall we’re talking about!

Throughout the rest of today (Tuesday), Kendall has just been very low-key. Resting/sleeping a lot. Still not wanting to/able to sit up on her own. Laying in her crib watching “hot-dog” (Mickey Mouse Clubhouse) on a little DVD player that an angel gave us last week for just this kind of thing! i tried to get through the bob marley hairdo she has created by laying flat on her back for the better part of a week, and she was having NONE of it. I am thinking we may have to shave the dredlocks off and start over….it’s REALLLLYYY bad. And you know, coming from me, mother of four little girls with curls, if I say its bad enough to shave it, it’s bad enough to shave it.

All in all, a pretty good day. a day of much improvement for Kendall (her blood counts are FINALLY out of the range where a blood transfusion was being threatened every few hours), she was awake for a little bit longer today, we got working access with the PICC, we came up with a long term access plan, and a few of her doctors and I have had some really good conversations regarding further care for this current gut situation as well as all=over health assessments. It’s hard to explain all the nuances especially since I feel like I’ve been typing for HOURS.

Thank you for the continued prayers. I don’t think it will hit me for a while just how very sucky this whole week has really been. horrifyingly sucky I am thinking… But I don’t have to think about that just now. I just have to focus on continuing to get Kendall better so we can get home to the other girls who are desperately missing us. I know that so many from our church want to know how to help or what you can do – and really – I am not even sure how to put it into words. The fallout from this week will not happen until early next week (assuming we are home for this weekend). When the crash hits me, THAT is when I will need the help and support. Meals are ALWAYS welcomed! Extra sleep, snacks/lunch stuff for the girls, magical house cleaning fairies, and deliveries of coke and starbucks are also high on my wishlist most days…

Tonite I am just really really praying that we are home in time for Kealey’s birthday. It’s this Sunday. Thankfully my dear aunt and cousins had the foresight to have an AWESOME little family party for Kealey on Sunday at their house, and I know that meant the world to her. I hope she gets a cake from me, and gets to blow out her candles with her whole family all together in her own home. I hope I get to go shopping for presents for her. Obviously a big party is not in the works this year, and she’s such an amazing little trooper, that she’ll just sort of shrug her shoulders and tell me “it’s ok momma, I’m just glad everybody is ok, and i love having my birthday with just my family”. She’s such a big girl…how did she get to be NINE?!?!?>!?

Ok now i’m going to start crying and I’ve kind of done more than enough of that in the past 24 hours.

Thank you for checking on us…I promise I’ll let you know how we need help as soon as I figure it out myself!

love and hugs to all of you from all of us!

Terra, Ben, Kendall and the whole K-crew

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