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.

life is like a river.

That Garth Brooks….he sure knows what he’s talking about. “life is like a river, ever changin as it goes, and a dreamer’s just a vessel that much follow where it goes. Trying to learn from what’s behind, and never knowing what’s in store makes each day a constant battle just to stay between the shores….”

This is where we are at this morning.

Kendall Quinn crashed hard yesterday morning. I had to pick her up from school where her very shaken nurse, principal and vice principal were sitting with her in the office, knowing she was obviously sick but feeling helpless to do anything about it. Off we flew to the local ER where we were blessed enough to get a doctor who actually followed her protocol and got things moving quickly to help get Kendall more comfortable.

For those who have been down this road with us before, you know how it goes a little bit.

These times are rough.

Kendall spikes a high fever, and for our best guesses, we assume she has “gone septic”. Bugs, the kind that live in your gut and help digest your food and help keep you healthy, have once again leaked out of her gut and into her bloodstream and set up a party on her central line in her heart. She gets a blood infection and it rages…And oh the toll those battles take on her little body.

The fever, the rigors (intense shivers), the nausea, the vomiting, the headache, the feeling of your blood pressure skyrocketing then plummeting in an attempt to find happy medium….it makes ME feel horrible just writing it out and it is not even me who is feeling those things. It is my baby. My beautiful strong warrior child…

Oh how i wish I could take this battle from her. I wish it was me feeling those things, not sitting here helplessly by her side watching as her body fights with all it has.

But she is here now, in the best possible place for her to fight, our home away from home on West5. The unit. the Pediatric Intensive Care unit. Where the nurses know what she needs almost before her body knows she needs it. Where we have had a nurse standing at her bedside almost nonstop since the transport team of blue angels transferred her to this bed. Where we have a dedicated pharmacist and lab technician right outside the door trying to help us do anything and everything to keep her body stable, comfortable, give it the tools it needs to FIGHT.

And fight she is.

It has been a rough night. Her heart is beating very fast in an attempt to keep blood and oxygen pumping through her system and in response to the elevated temperature caused by the infection. We are burning through our options to help relieve the discomfort from her high temp and are awaiting right now an approval for round the clock dosing of IV tylenol. It seems like this should be a no-brainer, but it is not. The medication is in short supply and costs a fortune. It is right now the only thing left that is working, and even then, is only buying us an hour or so of “calm”. Then she goes right back into a shaking fit, moaning, gasping for breath, eyes closed but not sleeping…..the hard times.

Her labs are a mess, her vitals are all over the place, and we have no direction or answers as of yet. I know that this is part of this journey and yet I am impatient. I want to know we are doing something RIGHT for her little body, but everything we do right now is causing other chain reactions. It is a necessary evil, but one that is hard to deal with.

Sleep was not in high supply here last night for anyone.  She has hallucinations when the fever is spiking. Hearing her have these nearly lucid conversations that are meaningless is both hilarious and heartbreaking. Yesterday she actually had an argument with herself: “I got it – no IIIII got it!!!! That’s mine! It is not yours!! it is MINE! I had it first! I had it first!!!” And then late last night she had a conversation with daddy about his car being in “down-down shicago”.

I usually know more by this point. Today I know only that she is fighting, and fighting hard. I am hopeful and optimistic that she will make a turn for the better today – but I do not know this for a fact.

I do know that she is very sick.

i know that K2 and K3 were in her classroom with her when she crashed, and that they carried with them all day the burden of knowing she was going to the hospital. I know that Karissa, she of Cloud Gathering fame, asked me on the phone last night if kendall needed the paralytics yet or if she was still breathing on her own. Kaylen told me she felt sad and nervous all day but didn’t want to cry so she didn’t say anything to her teacher. Kealey had no clue anything was going on but came home to an empty house after school. Ben is supposed to leave this morning for a two week trip to California for work. My parents will need to arrange their schedules for the next few days to stay with the big girls and get them off to school. These are the balls I am juggling. And i want to make it better for everyone and I cannot do that. I cannot FIX anything right now and it makes me feel horrible.

so many of you read the updates and you offer to help us and you tell me to tell you what I need, what we need, how you can help. And really – it is so hard to know what to say in times like this. Because I feel like a broken record! We need your prayers – first and foremost and most importantly. God knows what we need even if you feel like you aren’t even sure what you are praying for….Knowing that so many of you are sharing Kendall’s story and reading her updates and are lifting our family up with your prayers – this helps in ways that are immense and hard for me to help you understand. To feel undergirded by the support of so many friends and family and even virtual strangers – it is an amazing feeling.  To those of you here in Milwaukee who offer to help – food. I do not eat well during these times. Especially when I leave the house with no cash. I am so thankful to our amazing nurse/friend who brought me a jar of nutella, some nilla wafers and some cokes late last night. That was supper and it will be breakfast. I am not good about texting and asking for help, or for people to go out of their ways to bring food to this hospital int he middle of construction hell. But having food here at the hospital is something I do not take for granted and if you are so inclined, please feel free to bring me anything! I do not turn food down. Ever. We are in room 512 and if you don’t want to battle the parking garage nightmare things can always be left at the front main desk for our room/Kendall’s name. Gas cards are another constant need.

But mostly – we just need your love, support, prayers. Sharing Kendall’s page with your facebook friends and family is such a boost to our spirits to see people from all over praying for our sweet girl, for our family. Your messages of love and support to me via text, messages, emails – these all help me in ways I cannot describe to you. I am not always able to respond – but please know i am at some point reading them all.

I will continue to update Kendall’s page with any information I do receive.

Sorry this post is kind of all over the place….not a whole lot of coherent thoughts are being formed right now.

Thank you for being on this journey with us – it is so comforting to know we are never alone.

 

keep on keepin on~

terra.

a Kendall quinn update.

I haven’t done a good Kendall update here in a while.

Things overall have been fabulous. As fabulous as things get in our world I guess! Stable. Maybe that’s a better word. Very stable. She’s pulled a few kendallisms over the summer, but we were relatively prepared for them and were able to handle them with what is in our home arsenal.

She started kindergarten in august. Why our schools start in the middle of frigging summer I do not understand. But anyways – she made it!

Except for one small problem…

well two actually.

the first issue, that some of you who saw my facebook posts may remember, is that we didn’t have the “official” health form completed for Kendall. Now to get into the absolute redonkulousness of this issue will probably just raise my blood pressure – but suffice it to say that i was NOT happy when i received a phone call telling me they were going to “forcibly remove kendall from educational services and leave her in the office until the form is turned in”. yeah. no. You don’t get to forcibly do ANYTHING to my child….momma bear mode:ENGAGED.

but I remained calm. And in spite of the fact that the school has an easily one inch thick medical history on my child, we called her doctors and they were able to fill out THE form that assures them that kendall is not at risk for lead based paint poisoning and that she won’t keel over from diabetic shock. (No i’m not kidding. those were the two main issues they needed to have verification on. Bureaucracy gives me a headache. and possibly makes me want to eat lead based paint chips.)

So we resolved THAT issue only to discover that we will be losing our nurse who attends school with kendall on tuesdays and thursdays, leaving us with a grand total of ONE day every week that kendall gets to go to school! UGH – so frustrating. it’s always something…

And yes we have considered multiple other options.

the school (and we her parents agree) wants kendall to have a full time 1-on-1 nurse in the classroom with her. She has far too much going on to just kind of leave her to own devices. But the school does not have a contract set up with a nursing agency. So what has been happening is that we just send our home nurse with kendall. This is a good intermediate fix – but it means her school hours are cutting into the small allotment of nursing hours we are allowed for HOME use. I know – it’s confusing to even me sometimes. Basically – it’s been a survival mechanism for the past year – but now things HAVE to change. No – another agency won’t just be able to have a nurse ready and up to speed any quicker. Either way – we are looking at a couple weeks of training, interviewing, assessing skills….honestly most days i just can’t even think about it because it overwhelms me so much.

It is just that sense that there is ALWAYS so much to stay on top of with Kendall’s care – even when things are going FABULOUS – it is hard to explain it to people. I know i make it look easy. I am GLAD that she is doing so well that it’s hard to see what takes up so much time. I am SO grateful that she is doing well enough to be home. But some weeks that doesn’t make it any easier to deal with the constant attention her care requires. And i don’t mean just her hands on medical care – it’s the supplies, the nursing, the administration, the appointments, the therapy……it is just a lot. And now with school stuff on top of it, it is really wearing me thin to keep up and on top of everything.

but i’m keeping on. I’ll get organized some day. Some day there will be a whole week without any major hiccups that threaten to upturn the entire schedule!

Other than all of THAT hullaballoo….things are good! We are SO very grateful for her good health this year. I still credit the IVIG with a large part of why she is doing so well. It allows her body to be able to fight off the bugs, keep the bacteria at bay. We celebrated her broviac’s “birthday” in august. In fact I believe today marks 13 months with the same line in. This is absolutely astounding for the translocation queen! So yeah – truckin along here.

No huge speed bumps, just staying the course and trying to get her to still learn how to SIT STILL in school for more than three seconds at a time! It’s a challenge.

_____________________________________________________________________________________

And because life has changed so drastically in the 24 hours since I’ve written this, i’m going to post it now and do the update to the update.

i look at these words i wrote, less than 24 hours before she crashed, and i have chills.

this is what life is like with kendall.

the other shoe is ALWAYS waiting to drop. You just never know when.

so you either live in fear of it, or you live in spite OF it.
you learn to appreciate the calm days for what they are – because the next day your whole life could be upside down, and no amount of planning can ever prepare you for something like that.

One year.

Last year, on this Saturday night, I put a very cranky Kendall to bed. I had an extremely uneasy feeling about her attitude – just completely out of sorts after a very long day out in the hot sun – but we were headed to my favorite restaurant with some of my favorite people. So I put those fears aside, tried to enjoy dinner, and turned a blind eye to the storm on it’s way over the horizon.

The next morning she woke up screaming and that screaming continued until that night, when it abruptly stopped.

One year ago tomorrow (monday is the actual DATE, but it was a sunday when she crashed, I will remember it forever.) – our lives changed. This date, this anniversary of awfulness, it still holds some power over me. I never allowed myself to grieve this loss of innocence I had over Kendall’s “disease process”, and I never let the tears flow and I never let myself really process that terrible night/week. I shoved it down and i buried it and I never let it come up for air.IMG_0860

As this date has approached, I have felt those un-dealt-with feelings coming closer and closer to the surface. i have felt myself get inexplicably bitter at “cinco de mayo” commercials or references, I have felt anxiety-laden “panic attack” type chest pains, I have had those thoughts interrupting my normal every day functioning, demanding to be dealt with, and I have pushed them down time and again.

But I think it is time to deal with them. To let them come up to the surface, and to take their power of negativity away. It is time to let the bad feelings go, and replace them instead with feelings of celebration and pride for all that Kendall DID successfully fight through last May. Turn them into a celebration instead of something to dread.

Because the truth of the matter is – she IS here this cinco de mayo. What happened last year is in the past – and we can only focus on and look forward to the future. And right now, that future is so bright and amazing. She has fought through so many battles…

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she is a warrior princess.

She is my inspiration.

She is alive, and fighting, and amazing and beautiful and i love her with my whole being. I am so honored and blessed to be her momma.

to be all of my babies’ momma.

Life is good.

So here’s to celebrations, and triumphs, and good memories that make you smile.

Here’s to letting go of the power that fear can hold over you, letting go of the weight of carrying around buried feelings, letting go of the bad, and choosing instead to focus on the good.

Choosing.

It does not come easily. It is a nearly palpable feeling I have of literally picking up and setting aside a heavy jar of bad feelings, and turning instead to a beautiful jar full of good feelings and memories. It requires action, movement, motion, energy. It requires me to move from a place of comfort to a place of newness.

but I will choose joy, life, hope.

I will choose these any day over the heaviness of carrying around the buried bad feelings.

I am learning to choose the right choice, even if it’s not the easy choice.

So this cinco de mayo – we will celebrate life. we will celebrate an amazing warrior who has captured the hearts of so many with her sheer determination and bravery in the face of seemingly insurmountable odds. We will laugh at her crazy antics and will cherish even the challenging moments. I will tuck her into bed in her own bed and I will memorize the feel of the softness of her cheeks and i will place my hand upon her chest rising and falling on it’s own and i will marvel at the wonder of such a simple miracle. I will crawl under her bed to rescue her stupid nee-nee’s and I will turn on her Ariel music box without her having to ask and i will choose to spend the hour prepping her meds and tpn and feeds in JOY that I get to do all that work because it means she is here and alive and well. I will hug all my babies tighter and longer and be grateful that their little spirits are as resilient as the thickest rubber band, allowing them to bounce back from all life has thrown at them in their young ages.

I will CHOOSE to live life with the awe that this amazing journey demands.

Life is awesome.

Don’t ever forget that.

“It’s a cruel, crazy beautiful world

Every day you wake up I hope it’s to blue blue skies.”

– Johnny Clegg

 

Tiger Blood.

I don’t know, ok? sometimes things just pop out of my fingers before I can stop them.

So – tiger blood it is.

Because sometimes we all just need a little fierceness in our lives. we all just need to remember our tiger blood.20140416_121322398_iOS

Exhibit A – this super fierce hat i had to make for Kaylen for her 1st grade play last week. I lost about three fingerprints from the incessant amount of hot glue it took to get those dang flowers to stick to that paper plate but BAM. There it is. FIERCE.

I had this super awesome (just pretend it was) post all written and was JUST ABOUT to hit post and my stupid computer died. And ate it. Ate my awesomeness – just like that.

I wanted to cry.

Ok not really.

but I was all the sads about it because – hey – i had finally blogged.

So i’ll try to recreate it here because I have to start somewhere.

(and yes – for the record all you Captain Obvious’s out there – i DO realize it’s been forever since I blogged. I’m trying this new thing where I don’t sit on the couch and blog all day. It’s working out pretty well for me and my butt – not so much for the blog. I’m working on a happy medium.)

But seriously – i do love hearing from so many of you who miss my amazing repartee in your day. I miss interacting with you and having so many of you know all my quirky crazinesses and having you leave random messages on my facebook asking if “x problem of the day” has gotten resolved. Or if i’ve had any windowwill sushi lately. Or whathaveyou. So – while I am building up to the great MAW re-enactment posts – here’s a quick rundown of some FAQ’s for you all. And if you really truly love me you better figure out a way to actually INTERACT with me – or i will feel so horrible i will retreat into my cave of non-bloggyness again. Leave a comment, on here, on facebook, write me a message in the sky, send me a carrier pigeon, send me an amazon droid – YES DO THAT!!!!! ONE MILLION INTERWEBS DOLLARS FOR THE FIRST PERSON TO DO THAT – bring me food or cokes  or in the words of Kim Possible : Call me, beep me, if you wanna reach me.

You feel me??? We understand each other? Good.

Oh and miss C – my cookie messiah – you’re excused. those easter cookies were the bomb dot com. As always. Thank you love you how can i repay you?

I should probably not have consumed all that Easter candy before sitting down to write this….

But without further ado, I present – Answers to your….

 

FREQUENTLY ASKED QUESTIONS

 

1.) Yes we are all doing ok. No one has been hospitalized or even needed urgent care lately. Knock on wood, throw salt, hug a black cat, thank the baby cheebus – but we are all mostly healthy and very much alive. For the vast majority of you, this is enough to know. For those of you closest to me, you read between the lines and know that no news is usually good news, but sometimes no news means i just can’t/won’t put it all into words because i hate sounding like i’m complaining. Thank you for everyone who asks though – because I know it is because you care. 

2.) Make a Wish was Bey-Awesome. You know I’m rarely at a loss for words – but it is going to be ultra hard to put into words the amazingness that was this trip. I want to capture it all – the good, the bad, the ugly, the scary, the frustrations, the elation… I will get to it. Soon. I promise. Maybe even this week if i get enough positive ego strokes from your reciprocal interaction with me on all things social media related.

20140412_162437505_iOS3.) Karissa’s MRI did come back with no growth on her tumor – so that is GREAT news. Her pain is still there although it is more intermittent in nature now, and she is learning to handle it better so she can continue to breathe through the bad times. The kid is a fricking rock. I love her.

4.) Kendall’s gut is still craptapular. Feeds are going – not spectacularly so – but we keep on keepin on, keep hoping, keep praying. It breaks my heart to press “run” on the pump knowing that it is causing her so much pain….and yet the alternative is equally as heart breaking. So I do it anyways. our whole existence together – kendall and I – has been me subjecting her to painful things in the hopes that it gives her a better shot at life. It is messed up and warped and I hate it sometimes so I just don’t address it. Her gut sucks at working as a gut and there is very likely nothing on this side of heaven we can do to fix that. she also handles the pain like a champ though, which makes my hard job a little bit easier.

5.) We survived the “sleep” study last week. The chair for me to sleep in did not recline all the way, and Kendall slept with 2984 wires glued onto her head, throat and chest so – sleep was not in abundance for either of us. But hopefully her doctor was able to get the information he needed to help keep her lungs as healthy as possible. For those who don’t know or understand – ever since her lungs took their massive hits last summer when she was so sick, she has these episodes at night where she just “forgets” to breathe. Now, everyone likely does this at some point, maybe not every night, but it happens. It’s called apnea. It’s what happens when we wake ourselves up snoring or gasping for breath. The problem with kendall is that it is happening more on one side than the other (the side that had the most injury to it last May), and when it happens it is a pretty prolonged episode that is giving me gray hairs as i have to go tearing into her room at night, sit her up, wake her up, make her breathe again. So we don’t know if this is just her new baseline and she is capable of handling these episodes, sustaining them in the long run – or if we need to add pressure support (Bipap or Cpap) to her nightly oxygen. We should get a report from her doctor sometime this coming week or early next week. I’m not too worried about it – but it is good to have an idea of what her typical night of sleep is actually yielding as it may help us make better decisions about some of her daytime issues also.

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6.)I don’t remember what 6 was – I just know that in my original post there were six things….i’ll think of it later i’m sure.

I’m going to post this now before I lose it again.

If you have other FAQ’s that  I did not answer here – maybe it was number 6? – let me know and I will try to aggregate answers.

I hope you are all enjoying a beautiful Sunday afternoon with your family and friends!

Love and hugs~

 

Terra.

Hope In a Can.

So much hope in one little can. And a big bag of pure sugar.

With this crazy mixture, we hope we can rehabilitate Kendall’s gut. We hope her body will accept this blend of nutrition, absorb it, move it, grow on it, thrive on it.

Hope.

It’s the special ingredient not listed on that can.

If I were to pour out my heart here, all my feelings about this experiment – it would leave me feeling too vulnerable, raw, open. So i’ll try to sum up the ones that are closest to the surface.

To fully understand why I am emotional over this, you’d probably have to have more than a working knowledge of exactly why Kendall is on TPN in the first place. And then you’d have to understand that while TPN has been a lifeline, it has also been part of what has tried to kill her. It is the devil you learn to love and live with. And the truth of the matter is, the reason Kendall’s body has grown and thrived only on the super boosted TPN is somewhat of a medical mystery. Her issue lies somewhere in the nerves and how they communicate with her brain to communicate with her muscles. The messages get screwed up a lot. This leads to what is known as “pseudo-obstructions” – her body believes there is an actual blockage in her gut and it just shuts down operations in an attempt to protect itself. Except there really isn’t a blockage, there’s just an area of her gut that isn’t moving because the nerves are not working or the muscles aren’t getting the message or ??????

There is no real rhyme or reason to why these things happen. She could have a few good weeks with some minimal movement – these are the weeks that she is mostly happy, pain-free, not retching from nausea, wants to sit at the table and attempt to “eat” dinner with the family. And then she’ll have a “PO episode” – and her body will try to fight, and she gets her low-grade fevers, and has bad crampy diarrhea all day long, and gets nauseated at the drop of a hat, and lives from zofran dose to zofran dose.  those are the hard weeks. The weeks that I am quiet because the words I want to say sometimes aren’t “acceptable” language, and it mostly would just come out as a whine, a complaint about something over which I have no control. As she has had to fight off the regular colds and illnesses that a cold hard winter brings, the bad weeks have been more frequent lately. But then she’ll have a few good days and we try to hold on to those.

Overall – we keep moving forward. We focus on the good, the positive, the happy days. We choose to see that the overall big picture is one of awesomeness, and improvement, and yes – much hope. I am too superstitious to actually say out loud what next Saturday’s milestone will be – but if you have been around since the beginning, you’ll realize there’s a certain pattern regarding this current month.  And while I have no reason to think we won’t make it until next Saturday – I have a child who likes to pull crazy stunts. So i’m not gonna say it out loud yet.

So it is time to attempt to use Kendall’s gut for nutrition again.

For those of you who have seen her snacking before, you may be confused. I’ll try to explain.

Kendall CAN eat. On the good days when she isn’t doubled over with pain and nausea – she actually asks for a lot of food. It is confusing to understand if you aren’t around someone whose brain is routinely getting bombarded with the wrong messages from their messed up gut nerves.  Think about how you feel sometimes after having a tummy bug. You’ve puked up everything there could possibly be to puke up- and you’ve sworn you will never eat again so you don’t have to puke anymore. But your body needs nutrition. So you get messages to eat. And eat a lot. Eat whatever feels good, even if its telling you to run to Outback Steakhouse and get the biggest steak they have and load it up with mashed potatoes and grilled onions. The LOGICAL part of your brain tells you that no, that is not a good idea. But still, the message keeps coming – EAT EAT EAT!!! you may even have hunger pangs. Eventually you get brave enough to maybe nibble a saltine even though you know the risks are that you set off pukemageddon all over again.

Kendall’s problem is that she has never been able to logically connect that putting food into her mouth leads to the bad tummy pains. We spent the entire first year of her life hoping/believing the doctors who told us that she just needed to “wake up and eat” and all would be solved. She was in so much feeding therapy, speech therapy, we even took her to have her throat shocked twice a week trying to wake up the nerves so she would just EAT. After all that work – she finally learned to eat. She loved sitting with the family, she loved the social experience of “eating”. So trying later to undo all that work – it was hard. In her life, there’s not much she has control over. Some days, her wanting to snack on a few goldfish or have a butter sandwich is just not a battle I want to fight with her. We try to control WHAT she is eating – make it something that can eventually drain out her g-tube port if it decides to not move through very well. But if the girl wants a snack – well, she gets a snack.  It does not mean she is getting any nutritional value from it. Most of the time it sits in her stomach until she is hooked up to her drainage bag at night and then it makes its way back out her tummy. sometimes it slowly moves through, still mostly undigested, and shows up on the “other end” a few days later. sometimes it causes a massive bout of immediate diarrhea and it literally travels right through her. We try to help her connect the dots so she can start making smarter choices for herself – and sometimes that works and sometimes it doesn’t. 

But the bottom line is – food is her choice. the amount that she actually ingests is roughly equivalent to 1-2 snacks the average toddler would consume. That’s on a good day. The actual nutritional intake from that is very close to nothing. so even though you may see her “eating” – it is not a sign that she is “fixed”. The kid has literally been puking/retching into a bucket and asking me for a snack in between heaves. She just doesn’t get the connection. She fights through so much pain and nausea I cannot even fathom. We have tried to cut down on the major swings by just keeping her on a scheduled regimen of zofran (vs only using it when she is in obvious discomfort). We have adjusted her meds that have to go into her gut as those make her nauseated also. We have given her body 6 months of “rest” from having to do any of the work of absorbing nutrition, while still keeping it “moving” in a way by running pedialyte every night into her jejunal feeding port (into her small intestine).

And now, after 6 months of increasing stability and an overall positive direction towards “good health” – it is time to put her gut to the test again. Since we have previously tried every commercial formula out there considered “elemental” (already broken down so digestion is easier on kiddo’s with tummy issues), our dietician and tpn team got real creative with their plan. Due to some of what we know about her body does or doesn’t break down foods, we are going with a formula that is completely devoid of carbohydrates (since the assumption is that this is one of the harder parts her body has with malabsorption and why she requires such a high amount of carbs in her tpn in order to maintain growth). So the formula is carb free, but nutritionally it doesn’t work very well to have a 5 year old on a strict Atkins diet, so we have to add in a simple carb like dextrose. So we get a huge box full of sterile water, the carb free formula, and huge bags of D20 delivered to us, and we mix this up into a super unpalatable blend of nutrition.

We plug her feeding extension in to her jejunal port, turn on the pump, and we wait….

Last night was the first night of running this formula.

I have strict instructions that she is to be brought to the hospital (Milwaukee) immediately upon any sign of intolerance. Even if I think I can push her through it – she has to be admitted. Her GI is not a huge fan of doing this outpatient, but our team as a whole knows that our goal always has been and always will be “happy days at home”. So here we go.

she will be running this formula at a very low rate 24/7. If you know Kendall, you know she already wears her backpack with her heavy TPN bag and pump in it 24/7. So now we add in another bag, another pump, another tube she is constantly hooked up to. We will slowly be working our way up in her rate over the next couple of months. At some point around June, assuming she tolerates the rate increases, we will begin weaning down her TPN support. This will be HUGE. ANY amount of time we can get off the TPN is that much more boost to her liver, that much more of a shot at “surviving” tpn.

I am oh so very hopeful. And yet a teeny bit afraid to get my hopes up too high. I know God knows. I know God is in control. This is only so helpful on a day to day basis when it’s my baby, and the stakes for this succeeding or failing are so high. I have to hold on to that Hope though.

so here we go.

Mixing up a can of hope.

Cheers.

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terra.

it’s always worth it.

The past two days I have been consumed with IEP planning meetings. For those unfamiliar with the term “IEP” – basically it means special educational services your child needs to receive from their school. In case you’re wondering, no the school does not offer these services willingly. IEP’s usually involve a lot of heartache on both sides of the table – the school’s and the parents’ – because it’s hard to say the things they have to say and it’s hard to hear the things that have to be heard.

20130417_192141000_iOS They aren’t always all bad. Some of my friends have had horrible experiences, and some have sailed through their meetings with nothing but smiles. For me, my IEP’s for Kendall have always been more on the good/easy side than the heartache side. I see her struggles every day, and am able to rejoice in every single milestone she hits, knowing how amazing they each are. Hearing that she is 1-2 years delayed in multiple areas rolls off my back. Her team is mostly scared of her medical issues so things aren’t a “fight” per se in her IEP. She needs to be bussed in her wheelchair? sure thing. She needs a 1-1 nurse every day? You betcha. Anything else we can do to make her educational transition smooth? For the most part, things have just rolled along for kendall’s IEP. Sure there is a part of me that has to emotionally recover after every one, but for the most part, they are just a part of life with Kendall. Her IEP team has been in place for almost 3 years now, and I feel like they truly understand where my true GOALS for Kendall lie – and that isn’t about whether she can button three buttons or jump forward 9 inches – it is about having her experience life as normal as possible, It’s about doing whatever we can to ensure that she has as “regular” of a childhood school experience, on as many days as possible.

While Kendall has had an IEP her entire “school” experience (once she transitioned out of Early Intervention and into the school district at age 3), Karissa is my other child with educational challenges. Hers has been a very different path. Karissa was also in Early Intervention, and transitioned into the school district at age 3, related to speech delays. She has struggled from Kindergarten with what I have always perceived to be “learning disabilities”, but I have been told repeatedly that her issues would “resolve themselves” by the end of whatever grade level she was in. I have talked about her issues and struggles before on the blog, and if you know me in real life you’ve heard me ranting about it plenty!

Karissa has had a “504” plan in place for a couple years now – basically it is some smaller accommodations the school is willing to make so that she can have her educational needs met in spite of what may be medically related issues. For Karissa at the time we put this into place, it meant that she needed to have access to an extra snack, her water bottle and extra potty breaks. We thought she wasnt able to learn because she was too busy fighting what were at the time nearly back-to-back UTI’s. It was a good thought. She unfortunately has outgrown those type of accommodations and has shown a marked decrease in her academic skills this past school year.

Around Thanksgiving we started the process to add some interventions to Karissa’s school day to try to improve her functioning with regard especially to reading and writing, areas she is definitely struggling in. Today we finally had a meeting to discuss the team’s findings as they have been doing some in-depth testing as well as to discuss Karissa’s “Response to Interventions”.

I was nervous about today’s meeting. I know that Karissa CAN look like she’s compensating. And she Is able to coast pretty well. She has perfected the duck swim as I call it – she looks calm on the surface but underneath the water she is paddling furiously trying to stay afloat. It breaks my heart when I see how hard she works on her school stuff, when I can see that she isn’t “getting” the info and I have no idea how to open up the world of words to her. It frustrates me that I know her teachers can see the disconnect but they feel like their hands are tied as well. As much as I don’t WANT Karissa to need special education, in my heart I knew that realistically, it would be the best thing for her. But then I wasn’t sure that the school would be WILLING to admit that she had a problem worthy of receiving help!

It was a meeting i was not looking forward to.

And I’m still not sure how I feel about it, after the fact.

At the end of the day, the team decided that Karissa qualified for an IEP, receiving special education services for a portion of her day, but remaining in general education (her regular classroom) for most of the day. Her SpEd services will include a lot of accommodations aimed at making it easier for Karissa to function throughout her day by not having to rely so much on her OWN reading skills – she will have someone to help read things to her, go over them in more depth, and make sure that she is truly grasping the concept before testing her on it. It’s all good stuff. It is stuff that I would not have even been able to verbalize if they had asked me for a list. I am actually excited in a weird way to see how much more this will help her. Her testing even shows that she has the capacity for being a near genius – she is truly brilliant. But her brilliance is trapped behind a barrage of letters that don’t make sense to her.
It was hard to see the testing results. It was hard to bite my tongue through so many parts of that meeting. It was hard to not hulk smash the conference table when one of the team members admitted that “if we used a term like dyslexia, karissa’s results would be consistent with that diagnosis” (I have been saying she seems dyslexic since she was in preschool. PRESCHOOL, people.) But apparently we don’t believe in dyslexia anymore. So Karissa’s issues are left to float around on their own in “reading disorder, not specified”.

It was VERY hard to stay seated when the question was asked “is it worthwhile to pursue help for a child like Karissa”? (and really, the context under which the question was asked made it not sound as harsh as it may sound to read it out of context like this.)

But what my mommy heart HEARD at that moment, was “Is karissa worth our time and effort?”

And it was all i could do to keep from standing up and screaming – of course she’s worth it! My babies are worth every second of your time!

Luckily – that was the conclusion they also came to.

So here we go. On Monday, Karissa will start receiving specialized individualized education to address her major learning deficits. My hope is that this journey helps her learn to unlock and use all that amazingness in her brain. I hope this helps her get her love of school and all things bright and fluffy back. Right now, she’s just exhausted when it comes to school things.

This will not be an easy journey I am sure. It already is not easy. My emotions are all over the board tonight as I try to process through the meetings for both Kendall, where we discussed that her “school career” may not be that of a “healthy” child – that she in fact may not make it to high school – and for Karissa’s, where I heard the information that I have known all along said out loud. Managing the school system for now two children with IEP’s will not be easy.

But this much I know –

It will ALWAYS be worth it. Every meeting, every step, every milestone fought for and met – always worth it.

Worth the tears and the triumphs, worth the rescheduling and waiting, worth it all.

Always.

 

terra.

Kendall Update.

Just because it’s probably been a while since I’ve done a good update on Kendall. If you aren’t on her facebook page – Hope For Kendall – (you can easily click on the “like” button over there —>), you should be. I try to do some updates there on a weekly basis, and if anything huge comes up, that’s where I post it.

Overall, I’m so pleased to report that she is doing amazingly well. 6 months ago, I did not know if we would be here. I hoped – I hoped even against what I was being told by her doctors – and I prayed, oh how i prayed. And I WILLED her to get better, be better, push through, fight through, prove the odds wrong once again.

And she has.

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I know God has big plans for this little miss. He is the reason that she is here, thriving, doing so well. Your prayers to our merciful God are why she continues to do what she does on a daily basis.  It has not been an easy road by any means though.

You will not always hear a whole lot about the true ins and outs of all Kendall deals with on a daily or weekly basis. Part of that is because there are a few people involved peripherally in Kendall’s care who like to misuse the information they read on the internet about her, part of it is just that I don’t feel the need to post about every single time something goes wrong or is hard to deal with. A large part of it is because I never want to be one of “those moms” – the ones who seek attention for themselves via plastering their child’s medical issues everywhere. Sure, I share a lot of Kendall’s struggles. Maybe sometimes I have been guilty of sharing too much, but everything I share, I do because I feel at the time that it is the right thing to do. There are times when I think people need to hear what she is up against, because sometimes we all need to be reminded to stop complaining about the small stuff, and sometimes we need to stop and realize what a miracle it is that our bodies function as well as they do every day. And sometimes I just want people to understand how very amazing my beautiful warrior princess is.

Whatever my reasoning on that day – there are many times when I do not update simply because there wasn’t a whole lot of “good” or positive to share that day. It was just another day we all survived. It was full of nausea, tummy pains, headaches, meltdowns, behavior challenges, lots of therapy, lots of sleeping, lots of medicines, lots of my brain working overtime trying to plan for 12 different contingency plans based on the next hour. And really – these things don’t always need an update. Because at the end of the day, or the week, Kendall is still doing GOOD.

My definition and boundary of “doing good” has expanded so far these past few months I can’t even describe it20131222_003921910_iOS to you. It’s hard because the other girls get caught in that same super wide web of “oh, well as long as you aren’t requiring a ventilator to breathe right now, you’re probably healthy enough to go to school/dance/the store.” Surviving what we all survived those scary nights in July has changed all of us a little bit. Hopefully for the better. Sometimes for the not so good. When we were in the ER a few weeks ago with Kendall she knocked one of her leads off her chest and THAT alarm started going off and I felt my chest constrict and the room start spinning a little bit – it was just the NOISE that set me right back in that moment of panic and it took me almost an hour to calm back down.  I hate even looking at ambulances sometimes, thinking of her ride up to the hospital that day. I sometimes envy the “problems” of regular childhood illnesses that I see my friends dealing with. Sometimes I hold someones baby and I instinctively adjust for GJ tubes and pulse ox probes that aren’t there, and then I panic when I feel their smooth bellies like maybe I’ve pulled their tubey out. (Pardon my little foray into my own personal therapy session here….)

So maybe it isnt just the last few months that has changed us but the whole of Kendall’s life experience.

Whatever the definition of time we use – I know that it has changed me. It has changed how I perceive HER, and her issues. It has stretched us both, mother and daughter, in our indefinable intertwined relationship, to learn to understand the other better, to trust the other more, to become both more dependent and independent of each other.

And now when I try to update about how she’s doing – it has come to this. She is doing good. She is doing better than anyone expected. We don’t know for how long we have this awesomeness, which makes it all the more awesome because we try so very hard to not take the good days for granted.  She has adjusted to her IVIG infusions like a champ as we have learned to tweak the protocol under which she receives it. And to say “oh they are going great, she handles them fine” – even saying that is to neglect to convey to you what her body endures on that long day. She is awoken at 4:30 am to be placed into a cold car for a 2.5 hour drive. She is nauseated by all the movement in what should be the middle of a REM cycle. She is nauseated by the movement of the car for the first 30-45 minutes until her brain catches up with her a little bit. She retches and gags quietly to herself in the backseat while she tries to fall back asleep in spite of how bad she feels. We get to the hospital and walk down to the infusion center where she is swooped upon by 2-3 nurses hooking her up to vitals, taking blood, bringing medicines in and hooking her up to the machine she will be tethered to for 6+ hours. In order to help the IVIG be absorbed better into her bloodstream, she receives a high amount of IV 5% dextrose in addition to her TPN that also runs concurrent. The dextrose makes her jittery, but she can’t do much to burn off the energy because she is tired from the high doses of IV benadryl she must also receive in order to keep her body from attacking the IVIG. She receives almost 2 liters of fluid into her little body during her infusion. The demand on her heart to keep up with pumping this much fluid is enormous. She must also have her foley cath in her “Cinderella” during this time because it would be impossible to keep up with the amount of fluids retained in her bladder otherwise. And then when it is all done, and her other appointments have been completed for the day, we pack up in the car again for the long drive home, often getting home just in time for bedtime, so she can wake up early the next day and go to school.

20131211_215320000_iOS She does all of this with so very little complaining, it nearly breaks my heart when I think about it. She doesn’t question “why me?” – she just takes it for the part of her life that it is. She doesn’t try to take any of her “attachments” off, or get frustrated when she is tangled up in them like so much spaghetti tied in knots. She doesn’t whine that her head hurts or her tummy hurts or her heart hurts or her bladder hurts – she whispers these hurts to me when the door is shut and it is just her and I, knowing that there is not much I can do to make it better, just hold her and stroke her hair and tell her she will feel better soon.  This is just who she is. The strongest kid I know.

But this is just life in the trenches. We keep on keepin on. Really, it’s not so bad. I know so many of my friends would love to “only” have Kendall’s issues to deal with. It is what our every day lives are like – this give and take of good days and bad days.

We will soon be starting what we hope is “intestinal rehabilitation”. Her team has been working very hard to come up with a modular formula that will have the correct amount of nutrients and the least amount of “bad” stuff (sugars, fillers, random chemicals found in most commercial formulas). It is a complicated process that would require us to basically have a lab in our kitchen to properly prepare it – so as such it has to be prepared at a pharmacy and delivered to us every few days. As you might imagine, the cost of this will be redonkulous. We are awaiting and hopeful that insurance will approve this process. Originally we were supposed to admit Kendall to the ICU in order to start this process, but one of our awesome doctors pointed out that we could not define success or failure based on a few days, and that our overall goal for Kendall has always been to care for her at home. We have strict orders to head in to the ICU if she does appear to be not handling the starting of formula into her gut (even though the list of “signs of intolerance” her GI gave me she already does on a near daily basis with just pedialyte going into her gut). ..I guess it’s just going to be a lot of trial and error. It is scary to be in this place – truly stuck between a rock and a hard place. She is stable right now, her gut is as happy as I’ve ever seen it be. She is growing and thriving with her ridiculous amount of parenteral calories (her IV nutrition). Every once in a while she decides she wants to snack on something, and she can if that’s what she feels like, and if she doesn’t want to eat for days on end, no worries either. But the risks of continuing to rely on that IV are horrible to think about.  Even though it comes with it’s own set of risks, we HAVE to give this a try. We could push her gut right into a translocation (infections that make her sick like this summer), which is why we need to have an almost immediate response time to any issues so she can be admitted and started on antibiotics quickly, or we could lose all the ground we have already gained with being able to have her getting some enteral pedialyte. Both of these risks are very much worth it compared to the huge risk that it is to continue relying on TPN for all of her nutritional needs.

No one knows what to expect – even though we all hope for a miracle. The miracle would be that she could get back on full enteral (into her J tube) feeds.  But at this point, if we can get her consistently tolerating ANY amount of formula, and can taper her TPN calories and even maybe some of her TPN time, it is that much more HOPE that we have that we can stay one step ahead of her whacked out little system. I know we can make some big strides. I know she is as strong as she has ever been and is ready for this challenge, even 20131229_023725000_iOS though part of me wishes it was not going to be SUCH a challenge for her. Part of me would love to keep her this happy and functional and not ever have to put her through the hard stuff. But the hard stuff is what keeps her doing so well. the long hours of therapy and the discomfort of making her learn to pee on her own without the foley in all the time, and all of the other things we push her to do – this is what is saving her life.   I know this. So we will push her through this too, and know that in the end she will come out stronger than ever.

I don’t know when all of this will start – I know only that it has been in the works since the week after Thanksgiving.  Whenever it happens, it will be the best time.

So that is where she’s at right now. We are still working hard to get all the pieces in place for her Make a Wish trip – i cannot believe the logistics we have been working through just to try to find a week that will work – and now to get a nurse approved, then i think we can start our official “Yay Get Excited It’s a Real Countdown”. IF the dates manage to get locked in! I am sure the MAW people are going to hate us by the time all of this is said and done…it’s just craziness trying to find the right time between dance/seasons/enough time to plan for all the other issues we need….It’s making my head spin just thinking about it. So i will stop for now until I have more solid details to share with you!

Anyways – thats our update as of this moment.

Thanks for checking in on us!

Love and hugs~

Terra.

Expect Miracles.

What I’m going to post here is my notes/speech that I gave to the students at a local high school a few weeks ago. The class is “Intro to Health Services” – something like that – and is basically for students who know they want to go into the medical field in some way as a career. We were invited there by our friend who is in the class after she wrote a project about mitochondrial disease, and her teacher was interested in having Kendall and I come in to talk about mito, as well as what is it like to be a parent in a situation like this. I was instantly in love with the idea – I mean, getting to talk to baby doclings BEFORE they become baby doclings??? Yes please!

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So here’s kind of a synopsis of what I talked to them about. Some of it may not flow really well as a blog post because it was written for a live studio audience so….try to roll with it.

First I just want to tell you all that I am so impressed that you already know that you’d like to go into medicine. I’m sure you know that it will be a long hard journey, and that there will be times you may want to quit and give up. But it is my hope that our story will help inspire you in some way.

Because the truth is, Kendall would not be here today if it were not for some amazing doctors and nurses who sat right where you are sitting many years ago. They knew that medicine was their passion, and helping kids was what they wanted to do, and I’m so very glad they decided that.

I’m going to read you a list of some of the diagnoses that are listed on Kendall’s current medical chart that her hospital uses. You may have heard of some of these, and others you may never hear in your entire medical career:

  • Deep Venous Thrombosis
  • Intestinal Pseudo-obstruction
  • Mitochondrial Disorder
  • Chronic DVT of upper extremity
  • Recurrent Bloodstream Infection
  • Klebsiella sepsis
  • Anemia
  • Gastrojejunostomy feeding
  • Heart murmur (open Patent Ductus Arteriosus)
  • Shock, Septic Shock
  • Gram negative Septic Schock
  • Purpura Fulminans
  • Disseminated Intravascular Coagulation
  • Septic Shock due to Klebsiella Pneumoniae
  • Warm Septic Shock requiring Epi/Nor-Epi
  • Catecholamine Resistant Shock
  • Bacteremia
  • Endocarditis
  • Acute Respiratory Distress Syndrome
  • Renal Insufficiency

And there are three other pages, but you get the idea. This kid has a lot going on in her little body.

But there’s one more diagnosis that you won’t find listed on any of her charts, even though everyone who works with her knows it’s there. I want you to know that you WILL see  this at some point in your career, and I hope you recognize it when you see it.

That diagnosis is MIRACLE.

You may not know all those other words I just read – yet.

I wish that I did NOT know them, know intricately how very scary some of those words together mean, know what it is to have a baby that sick. I wish I did not know the panicky fear of hearing that my child’s blood pressure is “30 over palp” – which is basically non-existent. I wish I did not know what “code blue” really meant, and I wish I didn’t know how blue a body can turn when it has stopped functioning properly.

But I am SO glad that I know the true meaning of the word “miracle”. Because this little girl right here? She is one.

I could go on for hours about all that Kendall has fought through – not just this past year, but her whole life. I’ll try to give you the Cliffnotes version…
Kendall was born not breathing and was immediately rushed to the NICU at our hospital – we had no idea what was going on as we expected her to be a bouncy healthy baby girl like our older three had been. It was unbelievable to the doctors there that anything could actually be “wrong” with my full-term infant, and they kept telling us that she would just one day grow out of it. Grow out of not breathing, not eating, not gaining weight, not moving. That attitude followed us around the first 8 months of her life. Doctor after doctor tried telling me that Kendall “just had reflux” or “she’ll wake up one day and be totally fine”. Her diagnoses were piling up faster than I could Google them, but no one could help us put the puzzle of her together.

Some of her doctors now joke that I’ve earned my honorary MD degree – and it’s mostly true. I earned that degree with so many late nights, reading medical journals, articles, anything I could get my hands on that might help me figure out how to help Kendall. I looked up the words I didn’t know and I googled high school chemistry diagrams of the Krebs cycle. (Side note – study that. The Krebs Cycle will come in more handy than you may ever know! I did not pay attention then and it is one of my biggest regrets in life – as we know Kendall’s issues lie somewhere in her body’s inability to complete the Krebs Cycle with any kind of predictability!) I read and I read and I read, and I absorbed EVERYTHING i could. I questioned her doctors and I didn’t take NO for an answer, and somehow, through all of our  ups and downs, I can say that I have EARNED the respect of our medical team.

It was not an easy or a smooth road. There have been many many many frustrating ER visits, late-night admissions, even whole hospital stays that were more frustrating than helpful. I know that part of why your teacher asked me here today is because she wants you to hear a little bit about the medical field from the OTHER side, the perspective of the parents/patients you will be working with. So I’m going to give you a little glimpse into how things go at our hospital, which is a teaching hospital, and maybe prepare you a little bit for the kind of craziness you’re getting yourself into!

When you are in medical school, you may start doing “rounds” at a teaching hospital. Maybe you will be doing your clinicals for nursing school there too. Either way, you will be nervous. You may be EXTREMELY nervous. And no matter how much you think you are hiding it, you won’t be.

At our hospital, once you’ve been admitted to “acute care” (the only floors medical students and nursing students can work on), you’ve probably just spent a good 4-5 or more hours in the ER watching paint dry, and by the time you get up to a room, you are exhausted and worn out and just want to crash. But first we have to deal with what I call “the parade of doctors”. Your “senior” (who isn’t really a doctor himself yet) has assigned to you the legwork job of going to “get history”. Even though the ENTIRE FIVE YEARS OF HISTORY is in the computer and you could probably answer every question you might have by spending ten minutes reading the clinic notes in the patient file, this is part of the job so you come in with shaking hands, your short jacket pockets stuffed full of reference materials and notebooks and charts. If you’re REALLY unlucky you get a mom like me, who is tired and cranky and just wants the right meds put in as current active orders and to pull out the “boxes of bliss” (as the wooden hospital beds are referred to) and CRASH! I will be able to rattle off her meds before you can even stumble over their pronunciation in the computer and give you history in five minutes flat and tell you to just send your senior in so they can do their assessment and we can all go to bed. But if I could tell you anything that might help you get through these frustrating scenarios, it would be to really LISTEN….

The doctors who have been the most amazing in Kendall’s care are the ones who took the time to listen, and to hear beyond the words I am saying and understand what they really mean. They heard that when I said “My baby screams all night long” what I meant was “None of my kids are getting any sleep, I’m non-functional as their mommy, and my whole family needs relief”. Her doctors have learned that when I call and say “I’m not sure what’s going but I think something’s up with Kendall and I’m going to bring her in” – that it usually means something is wrong that needs some pretty good attention. It could be something like “she doesn’t want to play with playdoh at all” or something as scary as “her  blood pressures are all over the map and she’s third spacing her fluids with a temp trending upwards” – but whatever my “concern” is, they have learned – just as I hope you all eventually learn – “Moms Know Their Babies”.

Your mom knows you. She may not know if your blood pressure is too low and she may not be able to throw medical terms around with ease, but she knows if you aren’t feeling good. Moms ALWAYS know what’s up. Don’t forget that!

So here’s the things I want to leave you with:

Learn what it means to listen to, and really HEAR moms/families. Put their words into the “big picture” and look at all the different things that are affected by whatever issue you are helping to treat. Hearing the words from a nurse “I believe you and I want to help you” moved me to tears one particularly hard admission, and they turned the whole stay around. Be willing to be open to HEARING what is going on.

Remember WHY you are doing this. When you cannot absorb any more info into your head, and you are exhausted from a 36 hour shift in your residency, remember what made you love medicine in the first place. Usually it’s because of PEOPLE. Focus on the fact that your patients aren’t just a room number or a set of symptoms – they are someone’s mom, someones child, someone’s dad, sister, grampa. Treat them as if they were YOURS.

And finally – Expect Miracles.

there will be tough times. You will not always be the hero. you will order meds in the wrong dosage or you may even lose a patient you were giving chest compressions to. But for all the dark times, there will be amazing moments also. Don’t get so wrapped up in the science of it all that you forget one thing – the human spirit, the will to LIVE, is an amazing thing. Give it your best, and realize that there will be times when the outcome defies science. Embrace those times.

This girl right here? She’s one of them.

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T.

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.

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