turning the page.

Today we turn the page on a new month, turn the page on a new season even.

i hate being “in” over the page turn. It’s just a weird mental thing. Like not stepping on sidewalk cracks or having to wear certain shirts inside out on purpose. It causes a glitch in the matrix.
But we really didn’t have much choice in the matter so i’m trying to accept it for what it is and move forward without focusing too much on the calendar or the changing leaves outside the window.

i really just wanted to get some kind of post up on this actual calendar day.

I know there are so many questions some of you have about the information we have gotten from various tests/studies we’ve been doing on kendall trying to come up with a good plan of attack for getting her home. As i am exhausted at the moment, i hope this makes a modicum of sense.

Basically, we fought back the fungemia, her initial presenting issue – pretty well. Pulling the line and supporting her body through the septic shock by being proactive based on her past history – that was almost the easiest part of this stay. And just when we thought we had things all set for discharge – BAM….down went kendall again. Acting very sick, being in a  ton of pain, and essentially not giving anyone real warm fuzzies.
There’s so much i could write about – but the bottom line is this: her pain was out of this world insane for her, and she was requiring high doses frequently of narcotic pain meds, and because of, or maybe secondary to the pain, she was spiking fevers. EVery time she gets back over 102F, we have to re-send blood cultures to make sure we aren’t missing another infection.

So far those cultures have been negative, so we were really stumped as to what could cause her to look/act so septic and yet, apparently, be ok. She points to the pain as being located under or behind her ribs on her left side, and sometimes it radiates up that shoulder and sometimes its her right shoulder and sometimes it just hurts so bad she won’t take deep breaths and she gets in this hyperventilating breathing pattern. We have checked her pancreas and gall bladder – and while both are inflamed and angry and the gallbladder is full of sludge – the team doesn’t feel those are the problem. We know her spleen is three times its normal size and is not shrinking back down like it should be (it is stretched to capacity – and they do admit that could be pretty painful). We have ruled out kidney stones, established that she may have supermesenteric artery syndrome but that her renal pressures are ok for now, and essentially racked our collective brains for ANY other possible scenario under which we could be operating here. So far nothing new is popping out to anyone.

It is frustrating and heartbreaking and yet….I am glad we are looking. I am glad they are not giving up on trying to find answers for KQ. She is an enigmatic mystery for sure. And this pain – it is not my baby. It is new and whatever it is that is plaguing her it takes her WAY down when the meds have worn off and she is left only in this place of writhing, blinding pain.

We switched her antibiotics yesterday back to her old crazy plan where the nurses are scrambling, even with all the pumps and extra help, to fit everything in during their 12 hour shifts. And with that crazy schedule, her fever has not returned. Curiouser and curiouser. We have absolutely no idea what monster we are fighting.

This is …… it is one of the hardest battles I have helped my baby endure through. I am weary from this one, and I know her little body is so so so tired.

We don’t really have more of a plan right now. But this is what I know. I am exhausted so I will post this for tonight and hope that tomorrow brings renewed strength for the fight.

 

t.

Soon…But not yet.

Soon we will be packing up this room and loading into our car and making the long trek home…

But not yet.

Soon we will hopefully have answers for what has plagued our warrior princess for the past week…

But not yet.

Soon i will be able to hug my whole family all at once in our own home….

But not yet.

Soon there will be rest for our weary bodies and souls….

but not yet.

 

Rounds this morning were disheartening to say the least. I should have known based on the labs on the big ipad I run out to look out at every morning….things had done their typical trend in the wrong direction. Way too many red numbers (meaning her numbers were not in the right range). A very cranky Kendall asking for more medicine. A heartrate that beeped steadily higher all night while the breathing alarms went off with shocking regularity. A bag full of bright red urine hanging off the foot of her bed that i could see without even opening up the sleeping curtain. I heard various members of the team whispering outside her door, and knew the news was not “good”. i could pick up a few words here and there, enough to know that we were likely not going home today.

and sure enough on rounds, the attending doctor brought up that he was concerned enough about Kendall’s trends that he did not feel comfortable sending us home. i would take this information from VERY few people in this place. I would argue and stomp my feet and become overly sarcastic and essentially act like a five year old brat to get my way. But from him, his quiet demeanor speaking of a wisdom derived from years of watching kiddos like kendall do unpredictable things – I humbly accepted his proposal to stay at least one more day. But in the staying, to take further action. One thing I hate about “staying one more day” is when nothing is done. when its just “wait and see”. i do not “wait and see” very easily about ANYTHING in life. (I feel like there’s supposed to be some awesome lesson about God teaching me patience inserted here but i’m too impatient to try to figure out what that might be!)
the ONLY shred of sanity i have left about this situation is that at least today there will be ACTION. It still may not give us answers. We may be in no better of a place by tonight than we are right this second, but we will at least have tried. We’ve got to at least try.

Kendall’s body has rarely given us clues to the mysteries contained therein. she has caused much head-scratching and shoulder-shrugging in her almost 6 years on earth. Sometimes we just have to take our best guess and be ok with that as the best possible answer. We have always just tried to make things make as much sense as possible, using the resources we have available, and as long as she’s mostly staying the course, we are ok with that. We are happy with that. Sure there’s lots of stuff that isn’t “perfect”, but we’ve learned to live with it.  It’s part of why she “looks so good” on the outside – we just don’t make a huge deal out of little stuff. We’d be forever in a doctors office or living here in the hospital!

but right now – especially after the harrowing illness she battled the last two weeks – her body is trying to tell us something. and we aren’t really sure what.  She looks exhausted, tired, worn down, and just downright “sick” today.

Maybe it’s one of those times where her body is just more tired than we realize, and she needed some of the supports we’ve pulled away for a little bit longer. Maybe she’s just going to take longer to recover from this fungemia than we thought. Maybe it really IS pancreatitis on top of all of that and it’s just throwing her for a loop beyond any she’s dealt with before.

in any case – she will be getting another in-depth CT scan very soon. We are sending cultures of everything we can culture and will very likely be tanking her up with a blood transfusion to replace the blood she continues to lose from her gut and kidneys. Her need for the pain meds via IV is not being debated anymore so we are able to stay on top of that better to at least keep her comfortable.
I know so many of you have been SO faithful to pray with us and for us throughout this entire crazy journey. Please keep the prayers going over the next few hours – that if there is something to be found that the doctors will see it, will know what it is, will know how we can best treat it. And that if there is nothing to be found, that the team has a sense of peace about what supports she may need added back in to help her finish healing from the fungemia (the yeast infection in her blood that is why we first came to the hospital).
Please pray for the hearts of the other three K’s at home. We were all looking forward to a nice family dinner tonight thanks to some generous friends and gift cards. I know their little hearts endure so much when we are inpatient like this, and it kills me to not be there with them to reassure them that things WILL be ok, we will be home soon….just not yet.

i will update as soon as i know more.

which will hopefully be soon…

but not yet.

 

t

Trust your Intuition.

A lesson I have learned this crazy stay….. to trust my own intuition.

It’s not to say that I usually DON’T – but this stay above others – we acted, her doctors and Ben and I, on our intuition of what we thought Kendall was going to pull next. Fun facts about Kendall: She likes to go into septic shock really super fricking fast. And she will act FINE right up until she is in shock. And even the most seasoned intensivists (intensive care/critical care doctors) up here in the unit have learned to have a healthy respect for their intuition about what complex kiddos are going to do next, and for then throwing all their book knowledge out the window when it comes to kendall.

so this time, our intuition has been what leads us. It was one doctors intuition to call the transport team and tell them to grab the antifungal IV med before we left the ER, even though we had no indication that we would need it. It was another doctors intuition to start a second gram-negative coverage. It was another doctors intuition that led to speeding up the line removal and intubation process so it was in a controlled proactive environment (vs the chaotic reactive situation we got into last year.) And all along it has been my intution to say to those doctors – keep digging, keep fighting for my girl, keep making those choices that seem to make ZERO sense but are what is keeping things in control of the chaos her body is trying to throw. It was all of those things that got us out of the dark scary woods of septic shock and led to a successful extubation and presser wean.

But it has also been my continued momma gut intuition that has led me to keep pushing the team for a better response from kendall. It is hard sometimes to fight “against the team”. Especially a weekend team that knows next to nothing about my child and her penchant for the dramatic. It is hard to get people who don’t know me to understand that when i say “something is just not right with kendall” that i mean serious fricking business. And that the times i CANNOT put my finger on what is wrong are usually the scariest times.  Saturday and Sunday were frustrating for this reason. I just knew she hadn’t made “the flip” yet – this very visible switch in her demeanor that leads to me knowing we are safe to head home – and i wasn’t sure WHY she wasn’t making the flip, only that the placating answers about yeast and tired kids wasn’t cutting it. Something was still wrong. I just knew it. Only, i couldn’t get anyone else to listen.

It’s kind of like what i imagine it would be like to be stuck in a foreign country where you don’t know the language. And you try to explain to someone that you are in pain, you need medicine, but since you don’t speak their language and they don’t speak yours, and you aren’t bleeding out in an obvious way or having respiratory distress, you get patted on the back and head nods and “ok – you be ok!” But things are most definitely NOT OK and you just need someone to HELP YOU. That is how it was all weekend here. It was making me VERY agitated and frustrated and not a nice person at all.  (comments from the peanut gallery of the friends who took the brunt of my frustration this weekend will be stricken from the record!) But – I just knew….I didn’t know WHAT but I knew SOMETHING. And that was enough. 
So Monday morning rolls around and i am woken up to our nurse telling me we are headed down to surgery RIGHT NOW because they had an opening to get her temporary PICC line placed and replace her GJ tube which tends to harbor nasty yeast on it on a good day, and since we were trying to kind of eradicate as much yeast as possible and her tube was due to be changed last month anyways, we went ahead and did that. And again – thanks to the quick thinking intuition of her doctor, a dose of meropenum (one of kendall’s most favorite gram-negative coverage antibiotics) was ordered to be run during the procedures.
As a quick aside – let me explain here why we have to do all this line placement juggling since I get asked a lot of questions about it: Kendall survives day to day via nutrition that is run into her veins, called TPN (total parenteral nutrition). This is run into a large plastic “permanent” IV that is in her chest and tunnels down through her muscles and ribs directly into her heart. You may have seen this in real life or in pictures – its the white tubing that is sometimes visible on her upper chest. This is threaded into the backpack she wears all the time with her IV pump and the bag of TPN fluid in it. When you get a life threatening septic infection, it is usually advisable to remove that line as it is more than likely seeded with a bunch of little buggers that like to hang out on plastic things in warm places, like the heart. BUT – you can’t just put a new one back in until you are sure you have won the war against the bugs. So you send them to the OR to find a temporary central line because if you’re kendall by that time you are surviving only because of the insane amount of medications running on a million pumps into 1400 different IV lines that cannot be turned off for even a few seconds. THIS IS HOW WE HAVE FUN AROUND HERE FOLKS!!!! (that is tongue in cheek for those who aren’t blessed to have experienced my sarcasm in real life…) SO ANYWAYS – because kendall likes to survive solely on the IV meds flushing into her body, we need a lot of “access”, which is the fancy way of saying we need a crapton of IV’s.  so she gets, usually, a Femoral Line placed. If you think Femoral sounds familiar, you might be thinking of your FEMUR which is your thigh bone. So yes – that is where Kendall gets a triple lumen IV placed that threads up her femoral artery directly into her heart. And it’s ok if that thought skeeves you out because it most certainly skeeves me out.

The bad news here is that even after we’ve started to win the fight against the bugs, it is advantageous to wait as long as possible before placing another broviac (white chest IV). Since life would be decidedly and insanely difficult with a triple lumen IV in the crook of her leg, we have to decide what to do for “temporary central access”. OR – we have to beg infectious diseases, critical care and surgery teams to all play paper rock scissors and decide how soon we can put a new broviac in. Because she grew two crazy yeasts this time, no one wanted to play that game, so we decided to go with a PICC – which is a peripherally inserted central catheter. Basically its an IV that is placed in your arm that threads into your veins but doesn’t quite go all the way to your heart. My TRUE description of them is not fit for family viewing so i’ll keep it to myself – but suffice to say – we have a hate/hate relationship with them at our house.  I could not tell you if its just that kendalls peripheral veins are so crappy that they will never play nice with a picc, or if its just her body’s crazy schizophrenic clotting factors (“oh let’s make clots! NO!!! Let’s not clot at all – EVERRRRR!!! NO! CLOT CLOT CLOT!!! *gurgle gurgle gurgle* fine i’m just gonna bleed out slowlllllyyyyyy!”), or if its just that Kendall’s body likes to be obtuse – but we do not have good luck with them.

I am optimistic that we can get this thing to stay functional for the three to four weeks it needs to be. The longest we have ever had one picc stay working is 12 days. Here’s why that isn’t gonna work for me. So one lumen of Kendall’s picc will be dedicated to her TPN, which runs 24 hours a day, 7 days a week. The other lumen would, like with her broviac, be used to run her intermittent meds like zofran, benadryl, and then now the micafungin (antifungal meds that kills the yeast in her blood). So – ok, kind of a crunch but do-able. Micafungin cannot be run in the same lumen as TPN because of all sorts of dumb crap that i didn’t pay attention to in chemistry class.

AND THEN……Kendall decided to start getting sick again, and now it looks like she has a bacterial infection PLUS the fungemia so her medications will be running pretty much damn near ALL THE EFFING TIME into the other lumen. Usually what happens is that the smaller lumen gets a clot formed on the end of it (and no i don’t mean fibrin sheaths i mean literal thrombi), so we can’t use that. But everything won’t fit in with the TPN because 3 of the possible 6-7 meds we are looking at coming home on for the next few weeks are incompatible with the TPN. For those of you who blessedly have NO clue what i’m talking about you are so confused and that’s ok. For those of you who DO know i hope you are rocking in the corner with me at the thought of this monumental task ahead of us.

Bottom line: this picc MUST STAY WORKING. I think we are going to shoot for three weeks out – it will be IVIG time again and we can just bring her in for a quick stay and tune up and switch out the picc for a new broviac and go about our merry way. Sounds great, right???? YES. Let’s all vote for this plan!

Anyways – Monday after we got that picc line in, and hooked up to run her fluids into it, she started screaming in pain. And pretty much has only stopped for a few hours since then. They are telling me that they “probably just dislocated her shoulder a little bit” when they had to adjust her arm to thread the picc line around the curve of her arm down towards her heart. Because that is supposed to make us all feel better. Oh sure! just a little case of nursemaid shoulder! shake it off kid! But the other and more concerning thing is that starting monday afternoon, AFTER we pulled out that femoral line that bled like a stuck pig for thirty minutes and her poor nurse had to sit ON kendall’s bed with her hand squeezing that artery shut that whole time to get things to start to clot up, kendall started acting very very “off” again. By Tuesday morning it was evident that we were missing something major, and in the middle of it all was poor Kendall who just is absolutely worn out. I’ve never been septic myself, nor have i ever gone into shock from it – but they tell me it’s kind of like how crappy you feel when you have influenza, times ten.  Based on how crappy Kendall appears to feel, I do not doubt that for one second. I know she fights so hard to stay “happy”, or acting normal, in spite of how sick she may feel. So when I see my baby with absolutely no spunk left in her, and to be just beyond DONE with all of this….it makes me feel horrible. I knew something was wrong but we had no real information to go on as to WHAT it was.
We ended up adding back in antibacterial coverage  yesterday afternoon after we pulled new cultures off her new picc line – but really, it’s just our best guess. We don’t really know what else we are fighting here, only that we haven’t won the battle yet. After receiving her first dose of the gram-neg coverage meds was the first and reallly ONLY time I saw some of “kendall” come back, for a few brief moments.
After having an extremely rough night last night battling what we can only presume is pain, we were finally able to give her some relief using morphine. It is a horrible last resort – but one that luckily brought much needed rest to her poor little body. On rounds today we discussed that we have GOT to stay ahead of this pain – but there really are no good ideas right now about where the pain is coming from, or even if the pain is related to a possible location of infection. In short – we are still here kind of chasing the tail of a very sick Kendall who is fighting back with all her might.

It is sad to me to see her not wanting to play with her playdoh or try to paint something – things I would expect her to want to do by this point, if even for only a few minutes. She is gripping her new Frozen MagicClip dolls very tightly throughout most of the day, so that is some comfort I take in that she still has an interest in playing – just still doesn’t feel up to it.

I keep hoping that maybe after the next dose of  medicine or maybe after the next fluid bolus she’ll be “better”. She’ll have made “the flip”. I keep hoping, watching for it, praying for it. But so far, not yet. I’d normally be chomping at the bit by this time to discuss plans for home….even her doctor commented on it today that he knows something must still be up because i hadn’t brought up discharge yet. I told him that was because i only talk about discharge once I know I’m taking home a Kendall i’m capable of caring for at home. And we are most definitely not even close to that yet. But maybe tomorrow we will be closer.

IMG_7106 Maybe tomorrow this girl will make more of an appearance. This picture stopped me dead in my tracks when i saw it on my phone. I don’t remember taking it really, other than i’m sure she wanted me to do it sometime when we were waiting for sissies. She was probably all up in my grill about something and i was probably frustrated at her for that. And now i’d give just about anything to go back to this day – warm, happy, with a smiley girl who was full of her usual silliness. I know we’ll be back there soon….but she will be changed by this stay. She is in pain and I cannot fix it and i can’t make it go away and i can’t make her magically better.

But oh this smile….and her immense capacity for love. I cannot wait to have those back. I know they are waiting just around the riverbend. (Yes that’s from Pocahontas. i’m still trying to convince her to watch it with me. She’s got a few other things on her mind right now but i think i can probably make it happen before we leave for home!)

I’m just rambling now. I’ll wrap this up. I backdated a couple posts – one is an update on KQ i wrote less than 24 hours before she crashed.
Here’s to praying that we have more information tomorrow, and that maybe more smiles make their way onto her face tomorrow too. Thank you for being here, being part of this crazy journey with us.

Love~

me.

Recovery.

In case you had not seen the pictures on my or Kendall’s facebook pages – she has been extubated! Considering that I was not even in the mindset that she would need intubation this time, the weight that has been lifted by her breathing on her own and off of the presser support (no longer in septic shock) is huge. We as her family are SO very thankful for all of the prayers on our behalf and for the mercy of a loving God who has seen fit to allow us more time with our warrior princess.

This path of Kendall’s – the constant up/down swing of the pendulum of “health” – it is hard to explain unless you have lived it yourself. I have received many questions from some amazing new supporters (Kendall Krew we like to call you!) regarding why this or what does that mean and how does this affect that….it is hard to jump into the middle. And even for some of you who have been on this crazy ride with us since day one it is hard to keep up.

I titled today’s post recovery because it seems fitting. She is recovering from a horrific illness, but she is not “better”. She is recovering from the effects of the fungemic septic shock, which are many, but she is not back to 100%. And truthfully, she may not be for a long time. I am sitting here right now listening to the beep beep beep of her heartrate as it is monitored via the electrodes all over her body, and it is soooooo sloooooowwww.  Her heart is very tired. Even though she was ready for extubation and it was the right call – her body is still struggling to maintain enough energy for all of the demands on it. She is the compensation queen though – struggling here to compensate there and doing her best to just keep everything between the navigational beacons. None of her doctors really have a good explanation for me about this – it’s just one of those conversations that’s hard to have because the answers either aren’t there, or they aren’t easy to explain. Even though there is a very commonly held belief that Kendall’s main underlying diagnosis is mitochondrial disease, and because of that we know that her body does not make or sustain enough energy to operate all body systems efficiently – we do not have much more evidence past that. Because at the end of the day it really wouldn’t change anything. We cannot MAKE kendall’s gut work any more effectively than it does right now (which is really near nothing!) and we cannot MAKE her immune system function more properly.

I don’t really talk about Kendall having mito a whole lot – or at least – I don’t blame her day to day issues on mito. I accept that it is likely the reason we see what we see, but I spend much more time focusing on how to help her have the best day, week, month possible. I do not think in terms of years really. That is too much information to digest. most of the time I think in terms of chunks of hours. how can i make sure she is comfortable at school? how can i make sure she does well at therapy? if we want to go somewhere as a family on saturday that will tax her body, how can i start boosting it up on thursday to be able to handle that energy demand? Dwelling on the progressive nature of something like mito – it is overwhelming. It is too much. I don’t need to be reminded of the facts about this disease because we live it every day.
one of her doctors, the one who perhaps shoots straightest with me during these really rough times, told me the other day that kendall has had progression of her underlying disease, and that that is why her body went quicker into shock this time, and handled it much less efficiently in spite of the relatively good run of healthy months we have had. It wasn’t stated in any other way than just simple observed fact. But it was hard to swallow that. Because I know there is some truth to his words.

So we press on.

Kendall is doing well enough to talk about our plans toward home. Like I said – she is not “better” – but she will be out of the woods of needing life support, so we can handle things at home. If you have not ever taken a chronically ill child home from the hospital before – let me enlighten you a bit.
It is good, this going home. It means you are out of scary woods. you are still wandering around the edges of the woods – but you kind of know where you’re at. You will leave the “comfort” of the machines that beep out the vitals, the pharmacy down the hall with any and every med your child might need right there at your nurses fingertips,  the teams of doctors who make hard decisions so you don’t have to carry the weight of everything on your own shoulders, and you leave the amazing nurses who are at your child’s bedside 24/7 doing the overwhelming amount of medical care they need and dealing with the beeping pumps and the timing of meds round the clock.  These things will now rest solely on your shoulders.  If you are lucky, you have a nurse or two that can help once you get home, but they are not hospital nurses and they need to be updated on all the new conditions/symptoms/meds. This is not a quick five minute conversation. It wears you out to have to transfer information from doctors and nurses who work at a much faster pace than you to the nurses who work in the slower nicer pace of your home. But sometimes you don’t even have the nurses at home because they have all had to find other jobs while your child has been in the hospital. So you go home to do all the unpacking of medical supplies, and inventory the things that need to be ordered in your absence. You set up the chart of meds that will hang in multiple places around your house so you don’t forget an important medication in the flow of regular medications. You set the alarms on your phone as a second reminder, including the brutally painful 2am and 4 am ones. And unlike the hospital where everything has it’s own pump and requires only a quick change of syringe and pressing run – you have to set up new med lines and reprogram pumps and find a place for them to go because your home IV pole doesn’t have enough places for extra pumps.
You will now be the one sitting bedside watching the numbers on the monitor and hoping your home equipment isn’t lying to you about numbers and have to make your own decisions about what is “ok” and what might mean that things still aren’t hunky-dory and you will have to weigh in your mind if this is ok to leave overnight or do you need to wake up the other three kids and take them to someone’s house at 2 am so you can take the sick one back to the ER and await transport again to the hospital three hours away? you have to juggle all of the balls of this decision and play a really fun game called “risk/benefit ratio”. Is the risk of ignoring this greater than the benefit of addressing it and dealing with all of the other logistics required to address it?
You will be in your own house – able to do your laundry without being worried that someone else will steal something or will stop your load mid-cycle and set your wet clothes in a random place in the family waiting room. You will be able to sleep in your own bed that isn’t made up of vinyl covered boxes, but you will still need to give so much medical attention that you will hardly get to see it. You will get to shower in your own glorious shower with a shower head that sprays from above your head and with enough pressure to actually wash your body vs the elbow height dribbling of the family room shower. But this shower will need to be timed well between meds on the chart and alarms on your phone.
You will be home, with a child who has survived another life-threatening septic episode, and you will be grateful. So very grateful. You will perhaps grumble a litle to yourself under your breath as you are picking up the 38 milion polly pockets she had left laying around the day before she got sick, but you will catch yourself because you realize that soon enough she will be making that mess again and for that you are SO thankful.  You will try not to think about “next time”, and you will try not to think about what this time has taken out of her. you will focus on the here and now and getting through the next couple hours.  That is all you can do. So you do it as well as you can. Knowing all too well that “next time” will likely hit you out of the blue on a random sunny tuesday morning and you will start the cycle all over again.

This is what it is like this week.
You will see the pictures of Kendall tucked into the car. You will rejoice with us that she is making it HOME. home being such a beautiful word.
And you will rest easy that she has made it. She has survived.

I will be doing the same.
But please don’t stop the prayers then. I will need them more than ever once we get home. I will be going home this week (we hope!) with less than ideal central access for Kendall (we have to place a picc which rarely works for more than a week or so), with no nursing, and no husband (he left for his business trip today after postponing it last week). I have done it before and I will do it again – but I cannot do it alone. I can do ANYTHING and EVERYTHING through the supernatural strength that can only come from God taking pity on my soul and boosting my spirit when I need it the most. 
So this is how recovery will be. We will do our best to get miss kendall all tanked back up, get her legs working again, get her strong enough to go back to school if we ever get a nurse staffed at our house/school.
She will recover, and we will go back to living life. For this – we cannot thank you enough for your prayers and love and support.

We will keep on keepin on, because that’s how we roll around here.

terra.

Peace.

Have you ever had one of those times that didn’t SEEM like it was as hard as it was until after you were through it? And then in the absence of the hardness you realize that it was actually really fricking hard and it sucked?

That is me today, regarding yesterday.

Having to have a conversation with Kendall’s doctor about how we felt like she was looking, and admitting that she was not doing as well as we had hoped, that was hard. It was hard to know she was REALLY sick and was REALLY in pain/discomfort and there was absolutely NOTHING we could do to make it better. It was hard to not know what was making her so sick and if we were doing the right thing to try to help her. It was hard to have the intubation team gathered outside of Kendall’s room waiting for her to hopefully not crash while we tried to beg the OR (Operating Room) schedulers to clear a room for Kendall NOW. It was hard to be functional on absolutely zero sleep from spending the night at her bedside helping her deal with the nonstop vomiting and shaking from the fevers.

It was just really really hard.

It was still hard even after the decisions had been made. Even after the OR team came to take her down to surgery, and the consents had been signed and the carefully crafted plan written out and gone over with each team member….It was hard to leave her at the door of the OR suite and lean down and kiss her goodbye. It was hard to know that she would not be awake when she came back to us. It was hard to think about the battle that lay before her and the surgeon with her body in such a sick compromised state. It was hard to not think about “the last time” we had signed her over for this surgery, and the utter chaos that ensued after it had happened.

It was hard when she came back to the room last night, and there were teams of people on either side of her bed and at the foot and head of her bed, all working in a carefully choreographed dance of tubes, wires, pumps, medicines to hook her up to the ventilator, to the room monitors, to the meds that are keeping her heart pumping and her veins strong and the fluid in the right place and fighting the bugs. It was really really hard to be in here. I clutched the back of the chair until I heard the team lead call out the orders indicating that she was fully switched over to the PICU and no longer the OR team’s and then i ran from the room. I hate that i do not have the strength to stay in there and watch her at those times. But the emotions were threatening to overwhelm me and I try to never ever ever cry in her room, I keep it as a place of peace and happiness as much as possible. I ran down that hallway and i found the secluded bathroom and i shut the door and i slid down the wall and i felt the cool tile and i tried to just breathe…breathe. In and out. focus.

And when I had gathered up enough strength to come back, I walked back down the hall to where the controlled chaos was still going on and I stood just outside of her room, watching these amazing people who know exactly what each line is for and where it goes and how to order meds in just the right doses to keep a very crazy and unpredictable kid in a happy place. And one of the other nurses comes up behind me and grabs my hand and puts into it a pile of candy. She told me it was from another mom down the hall, another very strong momma who i am blessed to know, whose daughter is also here battling some nasty bugs with a body that is broken more often than not. And then that nurse pulled me into a hug, and whispered into my ear that kendall was gonna be ok. And that miss M (the other warrior princess) was gonna be ok, and that our girls were fighters. And I just leaned into her arms and let her hold me up for a minute.

These are glimpses into what life is like up here in the alternative universe known as the PICU. Food and candy and hugs – these are all we have to show our thanks as the parents of the babies who these amazing people work so hard every day to save. Our nurse the last couple days – she sat on the trashcan at Kendall’s bedside for almost three straight hours yesterday. Knowing in the way that only the best seasoned nurses know things that something was desperately wrong with Kendall – and working in the way that is unique to her to let anyone and everyone know that it was NOT ok to keep letting kendall suffer. The doctor who she complained to the loudest is the one who has saved kendall’s life a couple of times, and knows enough to know that something WAS going very wrong with kendall but she wasn’t making it clear to us exactly what that was. He sat in the hallway with us and had an agonizing conversation with us about having to intubate her. Earlier that morning we had a parade of nurses popping their heads in as they got off shift just to say hi and tell kendall to be strong. It is so hard to explain to you how this is just our family here.  I am strong here when i need to be only because the burden of Kendall’s care no longer rests squarely on my shoulders. I have so many amazing smart people who come alongside me and help lift that burden and they do it so very well….
there is not enough good things I can say about them all. Every single one.
they know when to come make you laugh and they know when to put their arm around you and ask if you’re doing as ok as you’re trying to act like you’re doing.

this is disjointed and probably makes very little sense. I am tired. I am emotional.
But i am thankful.

today has been calm, and that is the best possible scenario. Kendall’s body is still fighting a very good fight. She is initiating breaths over the vent and the vent settings are not very high. These are good signs. But she is still battling fevers between 102 and 104 degrees, and with every spike her body destabilizes a little bit. Because of her amazing nurse today we have been able to get back on top of these momentary losses, but she is still fighting a very tough battle.
tonight we hope she makes more baby steps in the right direction. we pray that God continues to hold her through this journey.

i have so much more i want to say but i’m kind of out of words right now.

t.

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.

Improvement At Last.

It is such an amazing thing to be able to write that we are FINALLY seeing some improvement for Kendall, instead of watching her get sicker and sicker!

Without boring you with too many details, here’s what we know:

All of the cultures we drew (special blood tests that allow them to put her blood in a petri dish and watch what “bugs” grow) from Edwards are all positive for growth, meaning she was not responding to the medications she was on there. She had three sets of cultures from her central line, and one set that they drew “peripherally” – all positive. The peripheral cultures were honestly what was most “shocking” because they were drawn after treatment had started, so they should have taken much longer to grow out, if at all. When they grew just as fast as the others, we knew she was headed for a not good situation.

When she was transferred here on Monday night, another set of cultures from her line was drawn, and those have SO FAR not grown anything. They are not considered officially negative until day 5, but having no growth so far is a very good sign. Last night she did not spike another fever, so no cultures were drawn last night, but they are going to be attempting soon to pull another set of peripheral cultures. This is going to be so many levels of fun i can’t even begin to describe it to you. The senior resident on the floor is well versed in Kendallisms, and is on the phone right now with the transport (helicopter) team begging them to come please try to get these labs off of Kendall’s peripheral veins. Her arm is still very bruised from the set of peripheral cultures they drew on sunday, where four nurses and two lab techs had to hold her down to get that blood drawn. I do not know where this child gets her feral strength from when she is so sick – but i’m kinda glad she has it. i think it’s a large part of why she is able to kick this horrid nasty septic infection to the curb.

so anyways – what was making her so sick. She is growing Klebsiella in her urine, which IMG_4564 made her very very very sick as a little baby. She is also growing StaphA, a variant that we had, up until an hour ago, thought could be possible MRSA (horrible infection to try to get rid of, as it is resistant to many things and requires lots of the big gun antibiotics to get rid of) in her blood, and her age old nemesis, candida albicans (yeast) in her blood. We were trying to kill the klebsiella before it too could enter her bloodstream, as that would have been very very bad. Pretty sure that has been accomplished as her urine from yesterday looks much better. All of this led to her teetering on the edge of “going septic”, which essentially  means “organ failure”. That all sounds really scary, and it very much is – but the good news is that Kendall is NOT septic. She was definitely having some scary trends towards that – her kidneys had essentially all but shut down, her liver was becoming very unhappy, she was in bone marrow suppression, headed towards DIC (think horror flick where blood pools everywhere), and was very much in a scary place. I don’t talk about how scared I am when I am really scared. I was really scared this past few days. But now I can say that we are making good progress, and while she isn’t out of the woods yet, she is definitely in a much better place.

She will beat these infections as she has in the past. Getting her line out was a huge part of that progress. If you’ve hung out around here for long, you know that bugs *heart* plastic things in the body, and they attach there and breed little buggy families and cause much general havoc and chaos. So getting the line that goes directly to her heart and thereby touches every single cell of her blood was important for her improvement. It was part of the reason we transferred up here to milwaukee, because when i asked the team at edwards how they planned to maintain access if we pulled her broviac, I got a blank stare. Not comforting. The team here KNOWS that access is of uber importance, and knows little missy’s penchant for blowing PIV’s like she’s a firework lighter. It really is not super fun to have to be up here away from my other girls – but seeing once again how awesomely responsive the team here is to Kendall’s craziness, it is reassuring.

I have been able to have many good talks to Kendall’s doctors. I am confident that she will come out of this stay in a much better position than she has been in for the past couple months. When she woke up this morning, she just had that sparkle back in her eye. She still doesn’t want to move a whole lot, and is very content to just lay in bed and watch a movie, occasionally play with some playdough she was given from child life. She can’t really sleep very well because of the overwhelming nausea. i’d show you pics of what “gut shutdown” looks like, but i don’t want to scare you. (and to all our friends who deal with “gut shutdown” on a daily basis, my deepest respect to you.) Kendall can put out some pretty nasty stuff on a daily basis, but the shutdown brought on by sepsis is really it’s own special brand of nasty. And she has some very intense nausea to go along with that. Luckily her GI is our attending this week, so he is authorizing the team to try lots of different things to keep her comfortable. This is SO very appreciated by me as usually i am having to beg/scream/yell to get her any relief beyond the minimal efforts they like to use. I am very optimistic that as soon as she makes a full recovery from this infection she will go back to her “baseline”, crappy as that is. It is still WORLDS better than what she has right now.

Complex Care (the doctors that essentially make sure that all the other “specialists” who work with Kendall don’t get tunnel-visioned on THEIR part of her body and work together as a team) has been a huge assistance with this stay too, and it is such a relief to have someone else who can be the support Kendall needs, so I can take a break from having to be momma bear 24-7. Kendall will probably likely be here through early next week. We need to ensure that this infection is WELL under control with more cultures (hoping for NEGATIVES!), tune up a few things in her care plan, and ensure that she will not need transfused or infused with blood or platelets. She’s kind of teetering on the edge of needing a transfusion right now, but we are trying to avoid one if at all possible. Kealey so sweetly told me she would give Kendall blood if she needed it. Heartbreaking what the other girls are going through right now. I’m so torn at times like this…needing to comfort them, needing to be with Kendall, needing to be a good wife to my husband…

I’m losing my train of thought….I actually DID get pretty good sleep last nite (for a hospital night), and I even had breakfast (coffee and a kit-kat) – so no lectures about that! Anyways – for those of you who wanted this info (because you think i’m mean for not getting kendall the big elmo balloon) – here is the link to the gift shop where you can order the big balloons for her yourself! I’m just kidding. Don’t get the big one! There is also a link on that page to send an e-card to Kendall’s room if you would like to do that! she is in W1105 and loves getting the mail from the volunteers! Thank you again to everyone who has helped keep me in stock with food/cokes! Or just keep me laughing with your craziness. Trying to explain to Ben how my friends had me rolling with laughter last nite….well let’s just say i gave up trying to explain it. Don’t forget that the honey boo boo finale is tonite!

Ok peeps – i am going to go see if any of my food is left in the family fridge…

i have a good post for you tonight. Ben wrote another post about his thoughts – you don’t want to miss it – so check back later!

 

peace out party people.

 

T.

Transfer.

While little missy is sleeping, I figured I’ll try to get a quick update out for everyone.IMG_4559

Sorry I kind of left things hanging, and for those on FB, you saw that we were transferred to milwaukee yesterday afternoon. The events preceding that transfer probably deserve their own post, or at least much more fleshing out than I am giving it here, but suffice it to say, it was the right decision to make. She wasn’t actively “crashing” or anything, but the info that her labs and cultures were revealing were making it clear that the limited knowledge of complex cases like Kendall that our local hospital has was just not going to go far in getting her better. (Not always reassuring when you are having to spell the name of the anti-fungal medication you had to suggest to the ID doc because he had never heard of it nor prescribed it before.)

The transfer up here itself was smooth. We had a nice quick ambulance ride, Kendall got a good nap in between watching toy story 3 on the big screen TV in the back of the ambulance, and she was generally still in surprisingly good spirits when we got here. Now if you’ve never checked in to a teaching hospital before, you cannot possibly understand the screechingly painful process of first going over vitals/issues with the nurse, then having to speak slowly and spell things for the medical student who comes in to get initial history, then repeat the same info to your child’s resident doctor, then have the senior resident come in to confirm/review all of that info, and THEN hope that between the three of them, all the medications got put into the system/ordered correctly so that when your child is due for their next dose of ‘fill in the blank’, it is ready to go, in the right form, at the right dosage.

We’ll just say it was a very long night last nite. I admit it was a little tough going from 1-1 care (Kendall had only one nurse who was solely assigned to Kendall’s case) at Edwards to up here where we are getting all the float nurses, and have, in our 14 hours here, had 5 different nurses already, none of whom really fully understand IMG_4560 Kendall’s needs right now. It is frustrating, but as long as Kendall is staying “ok”, i will try to have a better attitude about this.

In the middle of the nite Kendall spiked another fever to 102 something. They needed to redraw cultures off of her line at that point, and try to work to bring the fever down. For Kendall, motrin (ibuprofen) is the best way to do this. Unfortunately, motrin is a no-no in kiddo’s whose blood counts are dropping as low as Kendall’s are. Again, they had to have 83 people have a caucus about what was the best course of action – risk the bleeding the motrin could cause, or risk her fever going higher and causing more issues if we tried to hold it with tylenol. Let’s just say i’m not a super peppy decision maker at 2 am. I told them do motrin or you deal with her being febrile all nite. She got the motrin. After almost 2 hours of having to do near constant vitals (checking her bp/temp, she is on constant HR/o2 sat monitoring), watching her try to retch her way through a bad temp spike (she can’t throw up, so her brain just keeps telling her stomach to throw up even though it can’t – it’s not pretty), and in general just praying that God would bring some relief – we both crashed again.

As of right now this morning, I have yet to hear from a “real” doctor as to what our plan of action is for today. She is on isolation until we are able to determine whether or not she is growing MRSA as one of the other bugs in her blood. She was receiving “boluses”(imagine drinking 15 large mcdonald’s cokes in an hour) of fluid last nite to try to keep her blood pressures up (they are staying stable now), and in an effort to get her kidneys to start making pee again (they are reallllly slackin the last few days). Needless to say she looks a bit like the Stay-Puft Marshmallow baby right now, so they better have a real good plan for getting all that fluid back out of her since her kidneys aren’t playing nice.

She is awake now, talking, giggling at her super silly complex care doc (I mean honestly, I think even the most cold hearted person in the world would giggle at this man, he’s beyond ridiculous) – asking why she can’t play with play-doh, but not wanting to move at all. She’s firmly dug down into the little nest of blankets she has surrounding her, gets extremely grumpy when anyone needs to look at/touch/move any of her tubes, and moans in pain/nausea every few minutes. But overall, she is continuing to hold her own, in spite of how bad she looks on paper (lab results). She is an amazing trooper. I know I say that a lot, but if you could see how sick she SHOULD be, and how she fights through all of that crappy feeling to try to still be a regular kid – you’d say it too.

I’m hopeful that we get some better plans in place for getting her feeling better once rounds happen.IMG_4561

thanks for checking in with us – for praying – for bringing me cokes and chocolate and food yesterday. i always feel bad not listing you amazing people by name –but inevitably, i’d leave someone out, and really, even if you didn’t have a chance to bring a coke by, i still love you. So – huge shout outs to {insert your name here}!! thank you!!!

I’ll update again when i know more!

 

terra

Nothing Fun about Fungus.

Quick cliff notes catchup for the peeps not on facebook: Kendall is back in our local hospital with another infection. We were admitted late Saturday afternoon, and by mid-Sunday morning we knew she was growing yeast in her blood/line and bacteria in her urine. She was spiking fevers up to 105 early on Saturday after a semi-weird/off day for her on Friday, and that’s why we brought her in. She looks about as sick as she is – which is pretty sick right now, not gonna sugarcoat it. However, in typical Kendall fashion, just as quickly as she looks like she might be going downhill, she will perk up and ask in the sweetest voice if it’s time to go back to our car or go paint in the playroom yet.

 IMG_4513 So this is what is throwing me. She usually reveals her secrets in some way, at least to my discerning eye. I can typically tell at the first sideways fart whether or not she is sick/getting sick/needs to go to the ER.  But this time I couldn’t. Even now, as we sit here with the limited info we have, I cannot tell you what is going on in this little body of hers. I know she hasn’t made the turn around the corner that I like to see by this point. She was started on what should be “the right meds” last nite, has been getting nonstop fluids/meds/antibiotics and antifungals – but still, she’s just not “better”. She’s holding her own, don’t get me wrong. But she is up to something.

Right now, there is a very good possibility that what she is growing is resistant to the medications she is on. This could be because they are just strange (new) bugs, or it could be that her recent back to back issues have caused her bugs to “mutate” into resistance. (I’m oversimplifying it obviously – microbiology + me = not a good combo). Either way, all we are doing right now is holding the party in her bloodstream at bay. We are kind of playing a crazy game of thumb war, except with bugs vs meds/organ systems. If the bugs continue to eat through all her good blood cells, she has no defenses, and she could become “septic”.  Right now, there seems to be a standoff in that the bugs aren’t necessarily doing further damage at the moment, but they aren’t leaving her system either. The medications that she is on COULD just be pissing off the bugs even more, or they could be helping us gain a small victory. It’s hard to tell without knowing exactly what is going on in a little petri dish down in the basement somewhere labelled “Atkinson, K.”

I know that fungus (yeast) is Kendall’s long time arch nemesis. Her immune system is basically useless against overgrown yeast, but they sort of have an understanding and for the most part, leave each other alone. Yeast is nasty to get rid of. It can attach to any one of the plethora plastic tubes inserted in her body at any given time, and start a nice little family of blood-sucking killers. We are hoping right now that perhaps that is all that is going on – that we are drawing back fluids from these plastic tubes, and drawing in a bunch of yeast babies, and that they haven’t run rampant through her system again. This would be best case scenario. We can kill small little colonies hanging out at the entrance of plastic mecca’s. If the yeast has gone systemic, we have a much bigger battle on our hands.  We simply won’t know the answer to that question though until the petri dishes, and/or Kendall’s body, give up their secrets. She is currently, like clockwork, spiking fevers through the antibiotics/antifungals/antipyretics. With these spikes come horrible chills, very high heartrates, lots of horrific retching (trying to puke but being unable to because there’s nothing in her stomach, and even if there was, her stomach is tied in a knot surgically to prevent puking). This gives her a wicked headache and in general makes her beyond words miserable. It is heartbreaking to watch. Our nurse is amazing and has started anticipating these small little signs that something is coming up, and has been SUPER responsive with getting things pushed in to help relieve the spike before it can even build up.

Our doctor has been on the phone with the team in milwaukee. Until we know more info about what is growing and where, there just isn’t a lot that can be done. ID (infectious disease doctors, people who actually LIKE microbiology) should be coming by in about an hour to help us try to sort out what is going on, what meds to switch to, get a plan in place for if we need to talk about transferring.

And in the time it took me to write that – he was in here discussing plan!
For tonite, we are switching up her meds, trying the one thing that has consistently worked for her in the past (a somewhat brutal combo of meds, but better than the “last option” med that the doc originally brought up). She is definitely starting to feel the effects of being so sick, and is just “tired”. I put that in quotes because I don’t think it’s possible to fully sum up what I mean by tired with kendall. She just needs rest. She needs some support troops (better meds) to come in and help fight off the fungus. We need those little dishes in the lab to offer up some good info very soon. She NEEDS to start making pee again. Right now her kidneys and her gut are not super happy, which is to be expected with a sickness like this, but the pain that this is causing her is hard to stay on top of.

tomorrow is picture day at school. I have three other little girls at home who need help making sure their hair is not its typical banshee style, who need clean leotards and tights for ballet class tomorrow. Who need to be comforted by mommy that sissy is doing ok and will be home soon. Ben took this week off of work so we could switch on and off. the black and white stuff that is easy to check off a list, we got that down. If i try to stop and think about some of the other stuff, the little stuff, then i start to fall apart. By little i mean, questions that we just don’t have the answer to right now. But this is the way of our lives. Don’t make plans – they’ll likely be interrupted by a hospital visit. Don’t get too attached to thoughts of a clean house – it will likely never happen. But we will experience blessings in ways that other never get to. A card from a friend. An unexpected visit with coffee just the way i like it. A crazy voicemail with words of encouragement, and a few hysterical inside jokes thrown in for good measure. A cheeseburger that is so good it nearly brings tears to my eyes from a friend who was “just passing through”. You all give me the strength and encouragement to go on. And when I have strength, I can pass that strength on to my family. your prayers are felt – they always are.

Your offers of help – please believe me, they are so appreciated. I don’t often even know what “help” I need to start asking for! Assuming we stay in the area,I may need help with the logistics of getting the big girls to/from dance. Kaylen’s super-fun half-day kindy schedule may require some creative planning. Those of you who are just texting for my food orders/coffee orders – God bless you. Seriously. I don’t think I can tell you how very awesome it is to be able to get real live hugs from some of you during these times. When we are stuck in Milwaukee, we do get a few visitors – and our family is so graciously awesome who lives up there. But there is nothing that can replace having so many of you so close, and so HERE with us through it all. So thank you to everyone who has already stopped by, or given hugs. Including those friends who were in the next door room to us in the ER last nite with their own son! Sanctuary people – you are AMAZING examples of God’s hands and feet here on earth. We could not live this crazy life if it were not for you.

This is getting crazy rambly. I’ll try to update in the morning as soon as I hear more info.

Thank you, thank you thank you – for praying, for caring, for being on this journey with us.

 

terra.

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