Snowflakes that stay on my nose

And eyelashes. And brown paper packages and kitten’s whiskers and all that happy horsecaca. My favorite things – but the best of all – IT FINALLY SNOWED!!!!!!!
It’s starting to really feel more Christmasy around here and I’m loving it!

What a crazy weekend – lots of fun – just pretty busy! Got to see the girls’ grandparents from Florida and had so much fun hanging out with them, did a little Christmas shopping, Kendall went to her first ballet class with her BFF, and today got to go to a fun family christmas party with the Starlight Foundation! And now I need a weekend to recover from the weekend!

20131207_150401000_iOS Tomorrow will be spent trying to get everything set for our monthly Milwaukee trip – logistics for the girls to get to/from school and dance, hot lunch money scrounged for,  all of Kendall’s necessities packed up. This trip up will actually be two days worth of stuff – so I have to schlep all of her meds/pumps/fluids/chargers/supplies with us. We are also going to be changing out her GJ tube. Normally this is just something that happens – no thought from me needed, no complaining or making a huge deal out of it. It’s just a part of life for Kendall – sucky as it may feel to be pinned down and have a long tube threaded through her intestines.
But this time it’s different. For me at least.

See, last time she got her tube changed, she was fighting for her life three days later. While there is no hard evidence that the two are actually connected, there’s a high percentage that something happened during that tube change that allowed the bacteria an easy translocation into her bloodstream. Whether her gut was actually punctured by the guidewire or whether the act of removing and replacing the tube just stirred up too much bacteria for her body to handle – it’s not super far outside the realm of “risks” associated with a GJ tube change. She has needed her tube changed for two and a half months now. But i have been unable to bring myself to do it. I am scared. I daresay I have a touch of PTSD about it. I know God is in control of this situation, but I am still nervous.

However, it is time. Her tube is likely the reason she has been having some increased GI bleeding this past week. Plastic tubes that are soaked in bile for a long time get stiff. Stiff tubes of plastic in ones intestines lead to scrapes/pain/nausea/bleeding – all of which we are seeing on an increasing level with Kendall. Thank God for her doctor who understands that Kendall likes to deal in the unexpected and is helping us come up with a plan that will hopefully lessen the impact this tube change could have on her body. I am hopeful that the increased antibiotics she will be receiving this week via her tube and IV, coupled with Tuesday’s IVIG infusion, will help her body fight off any increased bacteria.  And hopefully then this tube change will help decrease the nausea/vomiting and bloody stools and just overall pain and yuckiness Kendall’s been dealing with the past few weeks. I know I don’t always talk a lot about the details of all she endures, and that I put up pictures of her smiling and having a good time, and i try really super hard to act like we are all just cruisin right along week to week. Because really, that’s what I hope for. I cannot imagine how hard it would be to deal with life if I were to focus on all the little (and big) issues we deal with every day.

Take today for instance. We are almost ready to get out the door to this christmas party – and Karissa notices that Kendall is dripping and leaking out of her backpack. Sure enough, her TPN bag has a huge hole in it. While it might seem that this is only a minor nuisance, a laundry issue – it is so much more serious than that. If Kendall has been infusing from a bag that was open to a cut all night, bacteria could have made their way into what should be a closed and sterile environment, and could have been infusing into her bloodstream all night.  Like she needs any help in that department. On the other hand – it could have just busted open about ten minutes before when she dropped her backpack so she could put her coat on. We had no real way of knowing. So what do we do? Do we panic, take her right to the ER where they could have run cultures/sat there and waited for labs/ruined the day for everyone else who was looking forward to this event? Do we just pray for God’s protection and go about our day trying to ignore the fact that kendall is now a ticking time bomb of possible septic infection? We tried to find a happy medium. I’m glad Ben was here – we were able to tag team unhooking the bad bag, rehooking up a new bag, doing our own set of baseline vitals, getting a contingency plan in place should one be needed, and going about our day with smiles plastered to our faces for the big girls. (for the record – her doctor is aware and happy with our current plan of treatment and if anything should change, they are ready and waiting for us. For now she appears to be safe from infection, and we are running extra fluids and keeping a close eye on her vitals.)
Nearly every day there is some kind of medical mayhem or issues that I don’t address in full detail – simply because I cannot live my life focused on all that COULD go wrong. Each day is precious. if i spent it focusing only on the bad stuff – it would get pretty darn depressing around here real fast. So instead I try to just keep moving forward – taking care of the blood coming out of Kendall’s bag and stoma, doing the incessant laundry created by the mass amounts of diarrhea, ordering the supplies that get forgotten, dealing with the insurance companies for the things they deny that we need, and praying that somehow, in the end, it all works out for God’s glory the way it should.  Kendall’s daytime oxygen needs have increased – our ability to give her that oxygen has made things like getting out of the house a little more tricky. would it be easier if our insurance would pay for a portable concentrator or if i beat someone over the head to carry teeny little tanks that would fit on kendall’s wheelchair easier? Sure it would. But that isn’t my life goal.  At the end of the day, we have the tanks we need to provide what kendall needs.  And that frees up my time to deal with trying to get the plethora other meds and supplies we need to keep flowing through here on a constant basis to keep her home and functional.
And if what you see at the end of all that effort is a happy, smiling, full of life little girl – then my job is complete. If it comes off as seamless and like “things are going fabulously” – all the better.  Because really – she is doing as well as can be expected. I do wish I knew exactly what was happening inside her little gut and I wish the meds we had could provide enough relief for her to make it all the way through each day without bad periods of puking and pain and bleeding.  I am hopeful her team can help us come up with a better plan this coming week as we are able to sit and discuss what is going on. I hope the tube change helps makes a major difference for the better, and that her body is able to fight off the inevitable stirring up of bad gut bacteria.  I hope her body is able to assimilate the IVIG with no reactions in the midst of all that is being asked of it this week.
I hope I don’t forget to pack anything important and I hope my other girls are angels at their home away from home again.  I REALLY hope we can find time to have someone help us get the stitches out of kendall’s broviac too! (It is stitched into place to allow the internal cuff to grow in to anchor the broviac firmly in the tissue of the chest – usually the stitches dissolve/fall out on their own. Unless you’re kendall. then they just sit there and irritate your broviac site and drive your momma crazy trying to keep them from filling up with gross stuff every dressing change.)

Anyways – it’s late now and I have to figure out how I’m going to fit four bajillion things into tomorrow and still get some sleep to make our trek north at 4 am Tuesday morning.

I hope your weekends were all magical and filled with your favorite things as well.

love and hugs~

T-crest.

July 25

Last year, on this very day, Kendall came to the hospital to have her bladder surgery. She apparently has a thing for the PICU in July, who knew?
We are hangin out here, waiting.

Waiting for the bugs to grow, waiting for her smile to show.

Waiting for  the lab to call waiting for the shoe to fall watching paint dry on the wall all we do is just

WAIT.

I feel in a time warp. Part of it is not sleeping since Monday night except for a few cat naps here and there, and part of it is being back on this floor, where I can see the doorway where i used to stand watch over my baby. Part of it is being here where things are the same and yet they are different. She is very sick again, but her body is handling it better. Will it KEEP handling it better or are we delaying a crash? i know this is irrational thinking but it is where my heart is at. I watch her like a hawk, inspecting her body for the little red pinpoint dots telling us we are losing. I keep my eyes trained on her monitors, watching wavy lines, waiting for them to settle into a rhythm. i lay in her bed with her and hold her through the waves of nausea that take her voice away take her eyes away take her breath away and wish I could take that away from her. I try to hold her tight to me as the fever spikes and her body shakes and i plead with God to make it stop shaking her so bad. I try to will her body to make more white blood cells to fight the bugs that are eating through her blood.

I talk to our nurse and I talk to the doctors and I try to tell them that something is wrong, something more than just sepsis. Something else is bothering her, or something else is causing this and I know I sound like the yappy little annoying puppy but I cannot let them think they are fixing one problem and ignoring another. And her nurses see it, and the doctor who sees her every visit sees it and the fellows don’t see it but then her angel doctor comes in and he knows that this isn’t kendall and he HEARS me and he orders the medicines and fluids that will help bring her back for at least a little bit.

I am being heard.

IMG_1603

That is a good feeling. It is not solving the issues at hand but it is an amazing feeling to be heard among all the voices, and know that I am fighting the fight my baby girl cannot fight on her own. It makes the waiting and the sleeplessness and the achiness from sleeping on the wooden boxes that are a “bed” all worth it.
We are moving FORWARD and we are ready to FIGHT this bug and figure out what is making her so sick. It is a weird feeling, to feel this “euphoric” in the PICU, with Kendall still hinging on the verge of “oh crap” sick. But I think it was just the boost my spirit needed to know that we are fighting a good fight. We are keepin on. Jockamo fee nanay and all that.

I am still exhausted. I have a long drive home this afternoon so I can get the girls to their dance class and complete a photo session and get some sleep on a real bed and shower in a real shower. I stand vigil at my baby’s bedside until I know she is not floating too far away from me and then I take a breath from my own oxygen mask and come back for the fight. I will eat some actual refrigerated food and put on some actual lotion and use actual 2-ply toilet paper. These are the things you appreciate when life comes into micro-focus in the PICU.

So things are looking up. And i’ll take that.

Now let’s go bag us some bugs.

terra.

Head to Toe, Part 2.

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

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

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

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

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

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

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

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

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

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

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

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

to be continued…

jockamo Fee Nanay.

I promise that’s not gibberish. Well, ok it kind of is, but it actually means something.

You’ve probably heard at least one rendition of the “Iko Iko” song. This is a line from that song, which was traditionally a battle cry between Indian warriors in the Southeast part of the United States a million years ago. Or somewhere in that time frame. Anyways – jockamo fee nanay means “We Have Come to Do Battle”.

Tonite more so than it has been in the past – this is my resolution.

We have come to do battle. We have come to win. You better run, nasty little klebsiella bugs in my baby’s body – we comin’ fo ya!!!

Tonite my baby is laying calmly in her bed, her position determined for her by special pillows and props placed strategically by the nurses to ensure the best circulation. There is the constant beep of her heartrate, the constant “chug-chug-chug-chuggggg” of the 9 pumps running meds and fluids into her, the “puf-pufff…puf-puffff” of the ventilator machine taking breaths for Kendall. The room is dark except for the eerie green glow from all the pumps and monitors. Tonight there is no “Little Mermaid” movie on an endless loop. Tonight I am not frantically searching for the dropped nee-nee (binkie) for the 83rd time – because there is no room in her mouth for the nee-nee.It is just Kendall and her machines vs the bugs invading her body tonite.

Her doctors tell me that she won’t have much of a memory of this time – no PTSD regarding all the interventions she has endured the past couple days. I think that is a good thing, and while i’m not entirely sure I buy it, i’ll hold on to it for tonight at least.

In the morning we will see how her lungs are looking. She is intubated tonight mostly because she developed ARDS – a sucky but not entirely unexpected response to the sepsis and fluid resuscitation she needed because of that. Her lungs are almost entirely filled with white cloudy-looking fluid. Also concerning is that she appears to have a pocket of fluid trapped in her pleural space which may require a chest tube to drain. I have not personally experienced a chest tube, but I hear they are among the most unpleasant experiences ever. She is still extremely fluid overloaded – her abdomen being the worst (to me at least). She is not draining  this fluid out of her tubes, nor is it being absorbed into her bloodstream where it can be peed off easily (or at least, more easier).
There’s a lot that has gone “wrong” with Kendall to make her this sick – but the bottom line is that it is not all entirely unexpected. I cannot express to you enough how amazing the team we have here in PICU has been. I know some of you think I should have my honorary nursing degree – but this stuff – all SERIOUSLY above my head. Imagine trying to make dinner by using two tiny sewing needles as your hands. That is about what this team is doing – trying to fix some very big problems by finely tuning to the “n-th degree” things that are so miniscule that most docs in a non PICU situation would probably never bat an eye at. I am sure I’m leaving out so much info that so many of you are wanting – sorry. I’m exhausted. I added it up this morning and I’ve gotten almost 8 total hours of sleep since Saturday night. I don’t want to start going off about Kelly Ripa or Katy Perry or any celebs right now!

Tonight I am watching three numbers on the monitors that I would covet your prayers for:

1. Her temperature. She has had high fevers (103 range) all day. On the one hand, this indicates that her body is doing a bang-up job actually mounting an immune response and then trying to FIGHT this infection. On the other hand – fevers this high are uncomfortable. We want her to have relief, and I’d like to see her body start winning a few battles here – by lowering that fever a little bit.

Her CVP – central venous pressures. They have come down from the 30’s to the 20s and now to the 15 range. Ideally we’d like them to be around 7. I’m not sure i fully understand the thought process behind that being an issue, but I guess it can’t hurt to try.

And lastly her blood pressure. She’s still on the pressers so it’s going to be a little on the high side. But I’d love to see any or all of these numbers trending in the right direction when I wake up.

Please also pray that she stays sedated. She’s a kiddo whose body likes to chew through sedation meds like they are candy – so we cannot keep her on a sedation drop of versed like would normally happen. We have her on one continuous med to control her sedation needs, and two others that are dosed every three hours. In between those doses she can get PRN doses for breakthrough “wakeups”. I will say this – our first “wakeup” today was a sight I would like to never ever ever witness again. Kendall was trying to choke/gag/cough up the tube – but because it is anchored below her vocal chords, it is not able to come out that easily – so she was choking harder, face turning beet red – trying to scream but no sound coming out – it was horrifying. I’m sure it was “normal” but not for this momma. Thankfully there were three nurses in here within a few seconds of this happening and they were able to re-sedate her and calm her down. She has woken up a few times since then also, but nothing as horrid as that first one.
Anyways – I know this is scattered. sorry. Hopefully I at least can get this one to publish in the right month!!
a huge-normous thank you to everyone who donated to Kendall’s paypal. I definitely have enough to get to the competition and back this weekend, and get food for another week or so here (hoping we don’t need THAT long though!) You all are such an amazing blessing to me and my family~

Thank you for the prayers, for the texts, messages, emails. Thank you for everything.

Hopefully I will update more in the morning.

Have a great night friends – hug your babies tonight.

 

love,

terra~

Random Thoughts from W1105.

Special treat time! i’m bored and the internet is wonky and i need something to keep my mind occupied.

So here you go – an extra middle of the day blog post from me. Full of the randomness spilling out of the top of my head at this very moment. If you get offended by possible swearing, talk of bra’s, or in general think this will be more mind-numbingly stupid than a Honey Boo Boo marathon – you’re probably right. Exit’s to the left. i won’t have hurt feelings.

I’m tired. I know you’re all probably going “duh”, or “join the club”. But I needed to say it. I’m really tired.

My bra is poking my chesticles. It hurts. I just called Ben to tell him I put on facebook that I needed him to fedex me a new bra. He was not amused. But is fedexing it.

We have awesome friends and family – and we are blessed to have this happen in two different cities in two different states while we try to live as a family separated. This is a huge thing. i seriously cannot thank enough the people who continue to ask me what we need – at home, at the hospital…you’re all amazing. My aunt came to the hospital today to sit with Kendall while I went out to lunch with my grandma. That was amazing.

I sat and talked and laughed with my grandma and she is the only one who can make me cry when i’m doing my best to not cry. And she did it again today. So then we both sat there laughing and crying at the same time like so many of my awesome memories are made of – my grandma, my aunt, my mom, and us girl cousins laughing and crying at some crazy story someone told…Anyways – it was so good to sit and talk with her. She’s full of wisdom, that one. I feel very blessed to be able to spend time with her while we are up here. Thank you aunt margie for coming and for writing down kendall’s every random request on stickers so i don’t forget that she wants green root beer and soup and a minnie balloon!

Someone took one of my cokes i had chillin in the parent fridge. This kind of pisses me off because hello – IT WAS ONE OF MY COKES!!! But i’m trying to think that whomever stole it (and yes it was plastered with kendall stickers, so someone had to know they were taking someone elses coke) really needed it. And I hope it was a blessing to them. I’m so magnanimous I know.

The transport nurse who worked on Kendall the whole trip up here just stopped in to say to her. That made me smile. Our resident on the floor said “every department i call for records or to set things up for kendall knows who she is! and everyone loves her!” That really made me smile. We are very loved here at the CHW. Having OUR GI and OUR complex care doc be on service – it’s a relief like I can’t even describe. It confirms that we made the right call to come up here when we did. It means that when i have to pull crazy momma bear, i have two big guns backing me up going – “do what she says and no one will be hurt”. Vs. having to claw and fight for everything she needs.

I didn’t cry yesterday. I haven’t cried at all during this crazy aced week. I did not cry when Kealey cried into my chest that she didn’t want us to leave. I didn’t cry when they were wheeling my baby down a hallway on a stretcher with life support equipment in their backpacks, and my other little ducklings were following along behind daddy, down the hallway, out the doors, into the big ambulance bay. I didn’t cry when i watched them crack the gurney into the back of the ambulance and escort me to the front seat. I did not cry when we pulled out of the bay and i waved to my other babies and my husband standing there, knowing that we would not see each other for almost a week. I did not cry as we flew through traffic on a busy Chicago freeway, racing towards a hospital that could better care for my very sick child. I don’t know why i have not cried yet. It is all very emotional. It is actually, i would dare say, scary this time. She is sick in a way that I have not seen her be sick before, in spite of the moments of silliness and wanting to play – her downtimes are very down. On paper, she is a train on fire headed towards a gasoline factory. Her labs are crap, crappy, and crappier. This infection is beating down her body. But she is still the same fighter. And I still believe in our Big God. Maybe i’m just coping well. Or maybe i need to be psycho-analyzed for my ability to sail calmly through a scary, crappy, effed up situation.

My friends –and auntie – you know how to pack awesome snacks. You are saving my booty – literally. i have no desire to go raid the vending machines on the surgical floor. Thank you. The ones who continue sending me crazy honey boo-boo related texts and messages – i love you.

I feel like I had tons more randomness to share when i started this post. But now its turning into a medical update post I need to make as so much has gone on in the time its taken me to piece this together. So here you go – enjoy the randomnicity.

 

terra.

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