Home away from home.

For those who don’t know – Kendall was re-admitted to her home away from home here on PICU 5 up in Milwaukee on Thursday night. At this point we are still unsure if it is an infection trying to brew that we caught super early, or if it is a delayed and “abnormal” reaction to the IVIG treatment she received on tuesday.

She started acting “off” on Wednesday afternoon, was definitely off on Thursday morning, and was a certifiable “hot mess” by Thursday afternoon. She spiked up to 102.8 fever, very high heart rates and blood pressures, and was becoming inconsolable from pain – so I ran around like a chicken with my head cut off for an hour waiting for babies to get off buses and hoping Ben could cancel his work trip in order to fight rush hour traffic and get home. My mind immediately began playing back the track of her doctor telling me “she will not survive another infection back to back” – and i was struggling to keep my panic in check while trying to stay calm enough to get the big girls and their logistics settled down.
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Thank God for good friends, for gas tanks that manage to run on fumes, and for a husband who can drive like a bat outta hell when one of his baby girls needs him. At the end of the day, the girls went to a friends house, Ben made it to the hospital with me and kendall, and as smooth as things can go in a situation like this, they went smoothly. It was So hard to run out the door, the girls had just come in off the bus all ready to tell me stories of their day, and instead i was waiting at the door so they could kiss their febrile, cranky sister goodbye and i could tell them to sit inside quietly with the door locked until daddy came home. They all had such stiff upper lips, but kaylen’s little lower lip quivered just a little bit as she was saying goodbye. i hate that they all have to know this kind of “fear” – are you coming home with sissy tonight? how long will it be until daddy is here? when will we see you again? – and yet have learned coping mechanisms to shove the fear down, sit at the table and get right to homework. My dear friend sharla who has stepped in and become a second mommy to my girls over this past crazy year was able to run and rescue them so that I could have Ben at the hospital with me. At that time i had no idea if Kendall was headed towards another bad crash or if it was just something “simple”. I had no idea if the hospital was going to follow Kendall’s protocol or if i was going to have to pull the momma bear routine again. Sometimes you just need poppa bear to come in and set some people right.

Thank the Lord we did not either of us have to get to that point. Edwards was already on top of everything by the time we got into a room thanks to a proactive phone call from our Milwaukee team explaining the severity of Kendall’s last few infections and that we just cannot tell ahead of time what is or isn’t Kendall “doing ok”. They started her protocol procedures immediately, gave Kendall extra comfort meds and Ben and I were able to focus on just praying over Kendall and getting logistics worked out. I was able to drive myself back home, get gas in the VERY empty car, and pack calmly for what is hopefully only a couple day stay. I went with the theory that if i packed for three weeks, we would only be here for three days. I got a small lecture about eating a real meal from “someone”, so I stopped to eat, and by the time I got back to Edwards, the milwaukee transport team had an ETA within 30 minutes. once I saw them get her all shifted over to their machines, I took off so I could be at the hospital ahead of them. I figured Kendall would sleep the whole trip up, but would be asking for me once she woke up when they stopped, and that is exactly what happened. We got about 30 minutes away from CHW and the skies just opened up into a torrential downpour! I was trying again to be calm about the fact that I was in one vehicle with zero visibility while my baby laid in the back of ambulance somewhere behind me, barreling towards the ICU, and I had no idea if she was still stable or if she was pulling crazy stuff. Again, the peace that passes understanding washed over me and I just knew she would be ok. Somehow, some way – she was going to be ok.

I pulled in to the garage, parked and unloaded our stuff, and began the long slow walk up to our unit. I knew we were in a room far away from where we were last month, but it was still a little hard to not start breathing a little hyperventilatery when i had to be buzzed in. I turned the corner around the welcome desk and down the hallway came one of our beautiful amazing nurses, one i am blessed to call my friend, running and jumping to come give me a hug. Its the kind of place you never want to be “excited” about being, and yet if you have to be here, its so good to be among friends and family. right then, I knew we would be ok. I knew i would get “some” sleep that night because once I answered all the questions I had to for check in, i knew our nurses would be able to handle anything Kendall threw their way.

And then the next day we had our angel nurse rachel back on the case – and when a new to us attending asked if we could transfer kendall up to the floor for observation, her firm and emphatic “no we can NOT” that went along with the horrified shakes of their heads “no” from the other rounding team members who know kendall again gave me such a peace that no matter what – we would all be ok. We were in the right place. It is hard and expensive and drives me CRAZY sometimes to make this drive – and yet, there is no other place. For better or for worse, milwaukee is where kendall belongs when she cannot be at home anymore.  I cannot put it into words for those who have never walked this path of medicalities before. And for those who have – you know exactly what I mean.

Anyways – Kendall is hangin tough. As part of her “emergency protocol” we started stress dose steroids in the ER and are dosing her every few hours. So far, Kendall has not had the cliff dive of craziness that we would normally see if she were septic (had something growing in her blood cultures). SO SO SO grateful for that.  But it leaves us all scratching our heads a little bit because her labs otherwise “look” like she could be fighting something, but she’s not “acting” that sick. So is that because the steroids are doing their job and stopping the catastrophic shock her body has been going in to? Or is it because this isn’t really sepsis, but rather a reaction to the IVIG treatment that is mimicking sepsis because her body is still recognizing those immunities as antibodies, something to be fought and rejected vs helpers to be assimilated.
Tough questions, and no one has any magical 8 ball to shake for good answers.
All we have is time, antibiotics, and a whole group of really smart doctors and nurses putting their minds to the grind and hashing through what they know of complex kids, and what they know of Kendall and her “-isms”. The hope right now, Saturday night, is that we get a final “all clear” report from the cultures drawn on thursday night, and that the labs we draw at 4 am show that her blood counts are going UP instead of the downward trend they’ve been on. If those two things happen, we will likely make plans for discharge tomorrow, call it a bad reaction, and have a conference at some point in the next couple weeks about how we will make a better plan for NEXT infusion time to support kendall’s body a little better to make it not cause this kind of reaction.
Mostly – I will be overjoyed to call this a reaction.

If it were another infection, it would be disheartening. we had just started gaining some good momentum with getting her back to baseline. It would feel a little….hopeless? I guess that’s the word i’m looking for….to think that her body was already spitting out bad bacteria. In spite of doing “all the right stuff” for her care. I do’nt really think it is an infection. i really feel like its just her crazy body showing us that her baseline is still razor thin. she has no reserves to deal with any little thing that pushes her out of that teeny tiny zone of “ok”. that in and of itself is a hard realization.
“but she looks so GOOD!” we hear this so often. It is a phrase that is the bane of every complex kiddo’s mom’s existence.We rejoice in the good days! They are awesome! We are glad that you get to see our kiddo’s who fight day in and day out just to have a semblance of normalcy “looking good”. I pour myself into making sure Kendall “looks good”. I do take it as a compliment when I hear that – but it is really sometimes hard to hear it. Because what it doesn’t say is “I can’t imagine how much it takes to keep her looking good”, or “how is she doing on the inside to be looking so good on the outside?” Not that i expect most of you to say that! If we are out and about in any kind of way where you are seeing us in public, she probably really IS doing as good as she looks. But for me – it is hard to look at her sometimes – wanting to chase her sisters and run to Target with mommy and just wanting to LIVE her life – and have to wonder what is really going on inside? 
but this is our life right now.

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we live by faith. Faith and hope that what we see is what we get – that good equals GOOD.
I am tired and feel like i’m rambling now. i didn’t get to many of my “mito awareness” plans for posts this week – but hopefully Kendall’s real life adventures are good mito awareness for you all. More so than any facts I could spout out – I hope that Kendall’s story brings awareness to the fact that none of us should ever take anything for granted. Grab hold of each minute, each boring hour at work, each tedious trip to the grocery store, each back-breaking loading of the dishwasher – relish that each of them has a good side. That’s what my mito awareness is. As I think of friends we’ve met on this journey who are watching their children near the end of their journeys on earth, I consider myself lucky. I will think of them, and think of our own story and the stories of so many of our friends with mito – and I will BE AWARE, that life is a gift.  All of the bad times and all of the boring times and all of the amazing yippee-skippee times – they are all worthy of being cherished. Because they all make up LIFE.

I hope you are all grabbing hold of life and living it to the fullest as best as you know how.

sorry for my crazy scattered thoughts tonight! if you have questions I didn’t answer – let me know!

 

much love to you all –

keep on keepin on~

 

terra

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.

Positive for Growth.

I am getting really sick of hearing those words. “culture in lab is positive for growth”.

For the uninitiated, this means Kendall is still sick. MUCH sicker than she’s looking or acting. We are all (nurses, doctors, residents, students) looking at her and going – “HOW is this kid functional?!?!?” As we continue to get more and more reports of positive cultures (she easily has at least 10 petri dishes in the lab at this point), everyone is starting to get a little more wary of her “looking so good”. She could be truly kicking this thing in Kendall style (which is my hope), or she could decide to crash on us at any moment (which the team is kinda hedgey on).  There have been already this morning multiple discussions on the plan for today/tomorrow/the weekend. Basically we are trying to juggle the balls of  PIV’s, meds, fluids/nutrition, cultures, and central access placement.

It’s a pretty convoluted thing to try to put down in words – but there are a lot of decisions that hinge on “a, b, or c” happening. Or not happening. If “____” happens, then we have to do “_____”. But if “_____” is also “_____”, then IMG_4563 we need to call “_____” for a “______”. Unless “_______”.  It’s kinda like a fun mad lib game. Except not. I was starting to feel VERY stressed by about 10 am because I was having different members who i love and trust of Kendall’s medical team pull me into the hall for conversations, and i would agree with their plan, until the next person came in, and I’d agree with THEIR plan, which was opposite of the one I just had. Add in trying to get Ben’s opinion/weigh-in on the matter, plus having friends share their thoughts – it was all just too much. The problem being – at the end of the day, the team is looking to ME to make the final decision. If I chose wrong, we could make a potentially HUGE mistake. Too much pressure.

And then I went to get a peanut butter cup cookie. (Have i ever blathered on about my extreme love of these amazing cookies from the cafe downstairs? Remind me to do that sometime. They are amazeballs.) Anyways. I came back upstairs to a sheepish looking ID (Infectious Disease) Fellow. Who I have had some GREAT conversations with over the past few days and have really come to trust and like a lot. She had news that the broviac tip had grown (they send the end part of the line they pull out of people with bugs like Kendalls out for testing) – “positive for growth”. At a rather alarming rate of growth, given the fact that she has been on “the right meds” for five days now. And all of our juggled balls went right out the window. We have one course of action at this point, and that is to put a PICC line into Kendall tomorrow morning. IF , God forbid, she should lose both of the IV’s she has in right now, we would attempt to get the helicopter team to come place another couple (we need one to run her fluids in and one to run her meds in). If they were unsuccessful, we would be looking at either needing to be transferred to the PICU for an “alternative” IV placement, or trying to get someone in IR who could place a PICC in the middle of the night. So let’s just hope these two stay put for another few hours, shall we???

Overall though, she is continuing to LOOK better, even if that switch hasn’t happened on paper yet.  Once she gets central access again (the picc line in her arm), the amount of blood that they need to take out of her will more than likely make her look crappy again – but it’s unfortunately unavoidable. She has far too many issues going on that we have to address, and to start doing that, it requires bloodwork. Hopefully she tolerates the blood letting long enough to give us some more direction. But needless to say, it’s still a tightrope act at the moment.

I continue to be amazed at how many members of kendall’s “team” are stopping by, checking on us, checking on her, helping us tweak and fine tune things. I know I said that yesterday too, but we have continued to have a steady stream of very well trusted doctors and nurses coming through all day again today. There’s nothing like having seen 15 doctors by noon to remind you how medically involved your child is, just incase you forgot while sitting in the hospital with a crappy infection. But you know, it is what it is. It is going a LONG way towards helping my peace of mind, and IMG_4566keeping me from my usual hospital mental overload, because it is not SOLELY up to me to fight for her this visit.

Also probably because I have an AMAZING stash of m&m’s and coke, and oreos and garlic pita chips and….well…i’m just very very blessed. And thankful, for all of you.

It has been a crappy week, not gonna lie. I have had a HUGE range of emotions this week, even if i haven’t necessarily blogged them all. sometimes things are too scary to even put into words. And they are equally sometimes too amazing to sum up in words. I am pretty certain that whenever we finally get home, I will have, well, essentially a temper tantrum probably. Or i’ll go completely comatose for a few days. We are supposed to be orientating a new nurse who can help with “part” of Kendall’s care. (She is an LPN, not an RN, and as such cannot be responsible for any of Kendall’s line care. Which is going to be awesome considering Kendall will have a TON of line care when we get home. Make sure you have your “sarcasm font” turned on when you read that last part…) The alternative to NOT orientating new nurse is that I am solely responsible for the ramped up care of Kendall, the catch up of re-entering real life, the overwhelming emotions and exhaustion that hit after a long-ish hospital stay, and the regular day to day “mom” stuff of my life. I’m really not saying all this here to be whiney or to gain sympathy. I’m simply processing in the way I do best – getting it out on “paper”. It is our life, and I will adjust and I will be fine either way. Ok, so “being fine” might entail “slightly more crazy than usual”, but whatevs.

I know so many of you have offered to help, and want to know what to do/how you can help. I am always so torn about putting things up on here because I never want it to seem like i am looking for handouts. Plus its hard to “ask” for help.  But i know that for some of you, you will bust on in the doors of my house and start doing something if i don’t tell you what I need so…IF you want to know how to help – and i’ll warn you, much of it involves clothes folding or toy organization. Also possibly some random babysitting shifts if i decide the nursing thing is too much for the first week back home. Anyways – I’ll have a list. you can email me if you want to see the list. That way i don’t have to feel like i’m begging, and you don’t have to feel obligated if you really don’t give two shakes of a lamb’s tail. Deal? Ok – my email is being really dumb here on the hospital network – so email me at terrarist101@gmail.com for the list. (and yes for the record, that email has earned me a spot on the FBI watch list. They randomly check my email to ensure that i am not dealing in arms or drugs or such. I can’t help that it was my nickname LONG before 9/11.)

Anyyywhooo…

I need to go grab some ice for my next coke. i’ve stopped putting things in the fridge cause i don’t want them getting stolen again! I need like a hotel ice bucket. OOO!!! I know! Emesis basins! i’ll fill that up with ice and put a few on that!

Ok that’s all the randomness I got for now from 1105.

See you on the flipside. Or..whatever side it is when I get bored enough to blog again. Which might be tonite.

 

tTerrarist.

The Never-Ending Story.

Ok as an aside – GREAT movie. i highly recommend it. We wore out the Betamax version of it at our local movie rental place when I was a kid. “ATREYUUUUUU!!!!!!”  Ok random stroll down memory lane over. End scene.

For those of you who stay up with the daily drama on Facebook, you will remember how I posted yesterday about the two phone calls we received from the team at the hospital AFTER they kicked us out of there that Kendall’s culture(s?) were growing a very strange bug, and they needed to know if she seemed sicker so they could have her come back in to start new meds for the new strange bug. And in typical Kendall fashion, she wasn’t SICK, but she also just wasn’t totally BETTER. She did this same thing last time they sent us home too, and we all know how that turned out (needing to be re-admitted three days later for another week of tweaking and a transfusion). I really could not say that I felt she was one way or the other. Lots of stupid little stuff that was “off” still – but much of the same stupid stuff that I dismissed the few days before she got sick with the yeast sepsis. So what do I know?!?!?!?

The plan at that time was to pull more cultures with our regular Monday bloodwork and see which way they were going (either growing more of the same, necessitating treatment or at least evaluation back up at Hotel CHW), or negative, meaning it was just a very very very strange contaminant, hopefully from the lab tech or in the lab itself (although neither of those options gives me warm fuzzies either! I know it happens in hospitals but come on!)

Annnnndddd we still don’t know much more at this point, late Tuesday nite! It generally takes about 24 hours for most bugs to grow out (of course the quinners likes to grow hers out in prompt timing, like 7 hours) – so I am HOPING that no news is good news. The report we got this morning just said “pending” – which is all kinds of super unhelpful!!! Pending what??? It drives me insane, this whole waiting for answers thing. I mean, I just cannot fathom that a kid who is acting mostly “ok” could be infected with the nasty bug they are telling me she has. However, no one could fathom last week how she was still sitting up and breathing on her own with yeast eating through her blood on a CBC smear either…

She also managed to jump JUST above the level i swore I’d call our nurse back at from Special Needs with her temp this afternoon, and spent about 3 hours having to sit on the couch in the darkened TV room watching hot dog nemo (a new fun crazy-making mashup whereby you have to GUESS if she really wants mickey mouse or nemo on and heaven help you if you pick wrong!!!!!) in order to cool off/get her sats back into the 90’s/heartrate out of the 160’s. I am HOPING that all that craziness was courtesy of the 15 minutes she spent in the shade on our front porch after her nap in the first blast of summer we’ve had around here! (It went from 60’s last week to 85 today!!!)

So all of that to say we’re still truckin’ over here! SHE is doing great – she has no idea she is “supposed to be” either super sick or super healthy – she just is kendall, in all her confusing glory! The never ending story of her (and our) life! We will keep a close eye on her still cause some of her bloodwork (labs) is taking definite downward trends from where it was even on discharge day last week. Hoping its all just “catchup” from a crazy week for her little body last week, but  a little bit worried that things are oddly similar to how it went after her last sickness earlier in the spring.

At least the weather today was a very nice and welcome break from the cold blah-ness of the past few months – hoping it means summer is around the corner!!! Cannot wait to get rid of this cough/sinusy/cold crap that I and Kaylen have been dealing with for a few weeks now!

Ok sorry this is a rather disjointed update and really has a whole lot of non-information in it – welcome to our lives the last few days!!! Thank you as always to those of you who are coming around us and supporting us in ways that I cannot even begin to list or tell you how much it means to us! The meals are an amazing blessing to us, and the snacks for the big girls are LIFESAVERS! We love you all – thanks for checking on us!

 

terra

SuperPowers.

Kendall had a really good nite in the grander scheme of things. She only needed blow-by oxygen for a couple hours to get her sats (saturation of oxygen in her blood) back into the 90’s.  Heartrate was still elevated all nite, but was staying in the 180 range – nice and far away from the 200’s! She had a mild spike (up to 103.5) that was much easier on her than the one from the afternoon, but again loading her up with tylenol/ibu, pushing some zofran to stop the vomiting that the spikes induce, and soaking her in cold wet rags allowed her to get some good rest. (And momma too!)

In fact, it was SO quiet all nite after that point (from about 1am – 6am) that I thought we might possibly get a negative culture this morning, and be able to start the countdown to discharge on Sunday! (someday I’ll learn to stop thinking so positive!)

Instead, i was woken up by the fellow  telling me we needed to have a chat. And the main point of that chat was that I was told we were going to remove her line. Her labwork today has literally thrown off docs from top to bottom of this hospital. The most notable oddity being that on her CBC (a complete blood count, one of the routine tests we run every time she’s sick – they run it on pretty much everyone who is sick enough to need bloodwork), instead of just having red cells/white cells/ and how much of each, she actually had yeast spores on the “smear”. i don’t fully understand how this is possible, other than, remember the petri dish thing I talked about yesterday where they have to “grow” the blood with special stuff? Yeah, Kendall’s doesn’t need the special stuff. It’s just growing and overtaking her blood. And along with that, taking all of the good blood. In essence, not a good situation at all.

Our attending came in shortly after that and said “ I do not know what kind of superpowers this kid has, but they are amazing. According to her bloodwork, she should be laying in a PICU very very sick right now. I do not have any idea how she is managing to function right now, let alone sit up and interact.” I corrected him and said they were SuperNatural Powers.

The bottom line though is that the only prudent and wise thing to do right now will be to take this line out. He doesn’t want to, the fellow doesn’t want to, not even ID really wants to – because no one thinks the line itself is the problem. But she has gone septic (again according to the labwork – not how she’s acting!) – and one of her counts is extremely elevated indicating that she possibly has a clot somewhere (or another massive source of inflammation that we cannot obviously see). Remember her whole “arm hurting” episode last week? Yeah – one of the first thoughts I had was that she had a clot. It could be a whole lot of nothing, but given what we are dealing with now, its worth checking out. Now our two residents were not understanding what i meant when i said “well what if we pull this line, and there’s still a clot somewhere, and we haven’t really solved the problem?” – they are acting as if the clot (if indeed one exists) HAS to be in the line itself, so if we pull the line, we pull the problem, and off she goes good as new.

Finally when they came on rounds and I asked the attending and the fellow, they said, that is what we are talking about (to the resident – who they had obviously had the same conversation with!). Anyways – it was all very confusing but I THINK now that the right people know what we are trying to do. We need to figure out if there is a clot somewhere in her upper vasculature that is NOT in her line. I am not sure if that would still save the line – but it might at least help us figure out a little better what is going on. If there is a “clot’, it could be leftover infected blood from the last infection, or it could be one of the “fungus balls” we were looking for on CT yesterday. The fellow is more afraid of it being a fungus ball, and if we try to break that up – all hell will literally break loose in this kids body. At least that is the fear.

She is still firmly stuck between a rock and a hard place. Our docs are definitely very wary with her “good” behavior, that it is a very false sense of comfort we have right now. We have all seen her go tumbling head first down a steep hill of “crashing”, and right now, she’s basically walking a tightrope across the Grand Canyon. Somehow she is staying on that little tightrope and doing a pretty good job at it – but the slightest little thing could be the tipping point for her, and right now she does not appear to have many (or any) reserves left. Complex Care has already begun making contingency plans for the weekend as we are going to be in a very tight corner. On the one hand, we hope that she starts making good improvements once the line is out and the yeast can’t attach to the plastic anymore and the anti-fungals start doing a better job of killing them off. On the other, she will be HOPEFULLY getting 2 PIV’s placed while she’s under anesthesia. Last time they could only find a spot for one, and that was what led to the horrific nite of begging pleading and praying that someone could get some access. I admit that I am very nervous about the situation she will be in going into the weekend. 

I’ll continue this later – they are here to get her for surgery…

 

thank you for praying!

 

terra

Monday…

It’s a monday around here. Just…blah. It snowed a lot yesterday and through this morning up k4hospital1 here in Milwaukee, but I hear its just been rainy down near home. At one point we couldn’t even see a thing out of the windows up here on the 11th floor! It just makes it seem that much more “wintery” instead of “springy”.

overall, she is continuing to take baby steps forward in improving! Definitely the right direction, and right now, we’ll take any steps that way that we can get. i don’t think that I have even fully grasped just how extremely sick she was on friday and saturday. I think that is blessedly because i was not here for the worst of it – because the entire time I was away from her, I just ached to be back here with her, helping Ben, going through this together. In my heart I knew i should have been here, which is why I had the mini-breakdown when Kaylen locked the keys in the car and I felt like we had no way of getting up here again.

Anyways – I have a lot to go back and catch up on, and hopefully as long as it stays calm and quiet around here, I’ll be able to do that.

First things first though – today’s update.

She has had one day of clear cultures! WOO HOO!!! Clear cultures means that her blood is not growing any more of the bad guys in the little dish down in the lab. It means WE are winning! (*insert “All i do is Win” by DJ khaled blasting in your ears here*)  In order to even begin to discuss discharge, we have to have three straight days of clear cultures. Having day one under our belts is certainly a huge step in the right direction, since we had three days of “growth”.

Her DIC – or should I say her disseminated intravascular coagulation – panel is “improving”. I HATE not having copies of labs in front of me, because I have no idea how bad they were, or what makes them “improving”. I know her platelets should be in the 150-450 range. k4hospital2Hers were 149 when we got to the ER (down from about 200 when we started tpn), and have been just getting chomped through since then, dropping 40-50 points a day. This is symptomatic of both a bad bacterial infection on its own, and is exacerbated in a sepsis situation. She is considered now to be out of the danger zone of DIC, but her platelets arent’ making quite the huge jump in numbers that we need them to. The more blood we draw to check this (and the many other labs that her docs want to keep an eye on), the worse we could make the situation. So for now, we are trying to draw the least amount of blood possible in order to hopefully let her body start making more platelets on its own. She came dangerously near urgent transfusion level, but given the complexity of all of her issues right now, no one wants to add any more craziness into the mix by transfusing a blood product that may or may not actually solve any issues (she has no signs of obvious bleeding anywhere, so we don’t need to replace them just yet).

So far she is showing very few signs of being respiratorily compromised by the flu. I think this is due in large part to the tamiflu having been started and now nearly finished, but also to the fact that she is just not up and moving around, so isn’t really moving a lot of the junk from her head/sinuses down into her throat, causing the wicked cough that the other girls and myself have. And maybe she just won’t. i hope she won’t because with her already kind of crappy lungs and an extremely unhappy immune system at the moment, I am sure it won’t be pretty. If you’ve heard Kaylen or Karissa in the past few days, you know exactly what I mean. If you haven’t, let’s just say that the use of a suction machine will definitely be needed for Kendall if she does start draining/coughing like they are.

Right now she is actually complaining of head pain (signing “hurts” and then pointing to her head/neck/ear area), so I don’t know if she is just getting a headache from ALL that she has been through, or if it is the wonderful sinus pain part of this crappy bug! And in true complex kid fashion, they don’t want to give her tylenol because it “might mask a fever”. But we can’t give her ibuprofen right now because she is still technically “thrombocytopenic” (aka, low platelets). If she were to whack her leg or arm or head on something, or start bleeding from somewhere, it would be a literal blood bath, and the ibuprofen (which has a blood thinning effect), would make that worse. So – we have to just keep trying to calm down a very whiney and grumpy 2 year old who has just been through the ringer and does NOT want to be calmed down for love nor money. At least when the pain subsides she is falling back into a pretty good sleep until the next time someone wants to come in and touch her or move her or examine her or just check the iv pumps! GRUMMMMMPPPPPYYYY!!!!

And – her IV is still in a very bad place. I think they have actually called the transport team to come down and help us find another site (or two if possible) to start more peripherals. ID (Infectious Diseases, the docs making the calls on her bacteremia and fungemia infections) wants us to try to make it till Wednesday before placing the PICC line to give her the best shot of having totally clear blood so another implanted catheter (permanent IV) has a good shot of being successful. If we absolutely can’t get access any other way, I think they’d sign off on a PICC  because right now we HAVE to have something to continue giving her the antibiotics at least, but also nutrition. GI is not really optimistic right now that we would have ANY luck with enteral feeds as a source of nutrition, but they are working on a few theories right now to come up with ways to help us get her back there sooner than later. So – we are having her limp along on D10, which itself is very hard on a small vein (like the one in her foot!), and every few hours they come in here with another essential electrolyte that we have to slowly infuse in order to try to keep her body from getting too out of whack. Her nutrition labs look….horrible. Which isn’t surprising. But we are definitely in a not fun place with regard to giving her the nutrition she also needs in order to keep fighting all that is warring in her body.

They just came in to our room to do an echocardiogram to make sure that none of the yeast in Kendalls bloodstream has decided to make a new hideout in her heart, where it could grow its evil army and attack her again the second we put a new plastic thingy in there. Or something like that.

So – that’s where we are this afternoon. Just kind of hanging out and waiting for NOTHING to grow. I think there is a rumor that if we get our three clear cultures and we have a working PICC, we can bust outta this joint. That would be Wednesday at the earliest, but more likely Thursday. That is IF we continue with the negative cultures. Which we hope for beyond hope!!!

Will update later if I know more to update!

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