So it takes this.

This is what it takes to get me writing again.

Watching my baby girl fight with all she has against yet another life-threatening illness. Except right now we don’t know what she’s fighting. All i know is, she is sick. Worse than i’ve seen her in a pretty long time. I’m so grateful we have had this reprieve from this all-too-familiar tale of sepsis. But oh it makes it so much more brutal to watch her body fight through this again.

For a long time i stopped writing because i was so worried or concerned about what other people think of how i portray Kendall’s story, my feelings, my story, our story. There are so many reasons my fingers could not portray the feelings in my head and my heart. But now is the time.

My baby girl is a fighter. I am a fighter. We are all fighters in our own way – but this is our story.

So i will tell it as I feel it is best told.

 

Today, this morning, her story is this:

Her body is fighting well against whatever enemy is invading it, but it is a neck and neck battle right now. She is battling high fevers, vomiting on a pretty regular basis, has bad headaches that come and go, and in general just feels and looks miserable. Her labs show the battle that is being waged internally. She is being given meds to support her body – IV tylenol and ibuprofen alternate in constant rotation with enteral tylenol and ibuprofen – there are only a few minutes at a time that she doesn’t have one of those anti fever meds going in. And still hardly any relief from the high fever. Along with that she is getting two IV antibiotics that run nearly constantly, plus IV steroids, IV zofran, IV benadryl and fluid boluses in an attempt to keep her blood pressures up. All of these are intended to support her body in various ways so that her body can focus on just fighting whatever bug is attacking it.

And here’s your oversimplified science lesson for the day – since it’s been a couple years since i’ve had to try to explain what it is that we are actually fighting.

With any illness that you or I or our kids fight, our bodies will ramp up their defenses to kill the offending organism, whether it’s a virus, a tummy bug, a bad cut on our finger, whatever. Our bone marrow pumps out the white blood cells in order to go attack the enemy, the body furnace turns up higher (a fever) in order to try to kill the organisms with heat since most of them like the nice even temps of our bodies at 98.6 degreed fahrenheit, and our organs all kick into higher functioning in order to clear out the bugs sooner. Our bodies are amazing. They do all these awesome things to fight organisms it knows shouldn’t be in there. And sure, we can get REAl sick and feel REALLY miserable and feel like our bodies arent doing their jobs at all because it’s taking so darn long to get rid of our symptoms! But that’s because in order to do all those things to fight an infection, it needs a lot of support – rest, fluids, vitamins, good food, etc. Anyways – i’m digressing.

The point being – it takes a lot of energy for our bodies to do what they know how to do in order to fight an infection.

And for Kendall, her body doesn’t always have that much energy. So her body is being overtaken by the bad bugs, with no good guy blood cells to go do their job because her body doesn’t recognize “hey! wake up! we are being invaded!!!” Until her organs start having a hard time – kidneys, liver, gut, etc – and then catastrophic shock like symptoms start to hit. Those are the times when are going so do we call 911 or drive like a crazy person to the ER because she’s spiked a temp, is shaking uncontrollably, and getting very sick very fast when a few hours before we were just calmly eating dinner or whatever.

The problem is then that the bad bugs have started to do their damage to the internal processes and indeed even the organs that should be sustaining life and will continue to do so until we mobilize her immune system by adding in the steroids and antibiotics that help kill off the bad bugs. So that’s where the “race” occurs. Will the bad bugs do too much damage before the antibiotics come in and eradicate them? And do we even have the right antibiotics to fight those bad bugs because we don’t always know the enemy until the culture report comes from the lab saying what exact bug it is and what drugs it is susceptible to (we call this “susceptibilities”). 

Anyways – that’s the background of what worries me, why i sit here and watch her monitor numbers because if those numbers indicate trouble, it means we aren’t killing the bad bugs. If her fever is still spiking up, it means her body is ramping up to try to kill more bugs. Sometimes the antibiotics just royally piss off the bugs and they multiply in order to try to avoid being killed off. Then her body tries to make more immune cells and this wears out her other organs because all her energy has to divert to her bone marrow and so then we have to make sure her kidneys are still filtering pee because if they aren’t clearing out the fluids we have to dump into her in order to keep her blood pressures stable then all that fluid goes right to her lungs which is why she ends up not being able to breathe very well and we have to add support like bipap or the ventilator/breathing tube. All of that is a delicate cycle of balance and with Kendall, we don’t get any large red warning flags usually. We have me, who just has “gut feelings” and “momma instinct” that things aren’t right, and then i have to go and be a yappy litle puppy to the doctors in an attempt to get them to understand that we aren’t winning the battle and we need to do something more and we need to do it SOON.

 

and that’s where i’ve been at the past few hours.

Last night was rough. I was very worried she was headed towards intubation because i could tell that her body was not keeping up with the necessary cycle of balance. She was exhausted. Her heart has been beating very hard and very fast for a lot longer than it usually does (due to the fevers and extra fluids), and she was just starting to get worn out. She managed to remain pretty stable throughout the night and for that i am incredibly grateful.

She is looking better on the monitors and even on her labs a little this morning. Which would normally mean hey! yay! we are winning!

And yet, she just isn’t perking up like i would hope. She is still very sick acting.We had some talks on rounds (when the team of doctors and nurses caring for her all sit and discuss the plan for the day and how she was overnight) about what is still going on and what our plan is to try to help her feel better.

For right now, we are boosting her up in steroids to hopefully help her organs stop sucking all her energy and get her all around feeling better.

Her main two doctors and I have a high suspicion that we are possibly fighting yeast in her blood stream – fungemia, or fungal sepsis. She has fought this before, and presented very similarly, which is why our suspicions are high. Now, we could be wrong. And I hope we are. But the last time she had this, we had a similarly acting kendall. Lethargic, sick, but seemingly doing “ok” according to the labs. And then bam out of the blue, the yeast get real pissed off and just overtake her and we are scrambling to add supports to her. So those supports are all in place should she need them, but we hope maybe the steroid boosts will be enough to help her round the proverbial corner we are all waiting on.

Right now, Saturday morning, I feel ok with this wait. Last night I did not. Sometimes we just go based on how i’m feeling and what kendall tells us with her behaviors and in her own words. Right now i’m not getting a whole lot of words from her so it’s heavy on the momma instinct. And my momma instinct tells me we have a good plan in place. That I’m ok to go home tonight to see my other babies who i miss terribly. It is so hard when i have my heart split into two places, two states. I hate leaving Kendall, I hate not seeing my other babies. I need some sleep. I need a shower. I need to stop thinking. I was woken up this morning to go have a high level medical discussion while i was still rubbing sleep out of my eyes. My brain is on overload and it needs a break. my heart is on overload and it needs a break. I need to get other clothes. My darling children packed me three bras, a tank top that says “whiskey is my spirit animal”, a pair of sweatpants, and one long sleeve shirt. It’s made for some interesting outfits. I need to go in to work tomorrow. Hours have been in short supply the past couple weeks as is the nature of retail in January, and i more than ever need the paycheck. so i am torn. I am always torn. I am always feeling like i let someone down, no matter what i’m choosing.

Anyways – that’s where things are at right now.

Stable, but cautious.

 

I cannot thank you all enough for your prayers, for the love via texts and messages, for checking on me. To my friends who sent or brought food to me at the hospital because you know i am not eating or drinking enough, thank you. You are the reason i can sit at her bedside and watch numbers. Your prayers sustain us and i am forever grateful for them.

Keep on Keepin on~

 

T.

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.

You will learn.

I was overwhelmed at the response to last week’s emotional outpouring of my thoughts regarding being/becoming a mom to a child with special needs. It felt cathartic to write some of that stuff – stuff that I usually keep stuffed in, but comes out occasionally. I decided maybe I should try to get some more of it out. If it helps other moms in their journey, then I WANT to get it out. I’ve “met” some amazing new people this week because of that post, and I hope that those friendships continue to develop, that that post continues to touch people’s hearts. So here you go – more of the stuff I stuff inside. As one of those friends goes in for some pretty major surgery this week, I thought I’d talk a little about what you will learn when your baby goes to surgery.

 

You think you know what it’s like, because you have seen it on TV before.

Or because you have handed your baby off for a 20 minute procedure involving putting teeny tubes in their ears.

Or because your cousin’s babysitter’s dog-walker’s son once had to have surgery and you heard all about that.

But nothing will prepare you for the first time (or any time) you have to hand off your baby to a team of gowned up doctors and nurses and go wait in “family surgery waiting area”.

Here is what you will need to know:

You will not be able to sign the consent forms. You know how to write your name, and you can see IMG_4387 the line on the paper, and your hand FEELs like it should be responding to the command to “sign here please”…but it won’t. You will see the surgery listed out in cold medical terms at the top of the sheet, and the cute little teenager who claims to be a “resident doctor” is telling you that it just details what is going on and some of the common risks and they need you to sign it as consent and permission to perform that surgery – but still, your hand won’t work. You cannot do it. You will have a mental block against being the one who signs the paper that made it ok to make a hole in your baby’s stomach/chest/neck/head. You will not be able to be the one who says – yes, it is ok for you to put my baby through all of this pain while I sit out here thinking of anything else but what is going on in there. Your husband will notice the drops of your tears on the paper and your hand shaking above that paper and he will take it from you and sign his name instead. He will know without you saying that no matter what that paper ever says, you are unable to sign it.

You will learn that nothing is ever set in stone until the anesthesiologist comes in. You will learn that these smartest of the smart doctors are the ones who REALLY hold your child’s life in their hands. You will learn that they speak a whole other language from what the surgeon speaks, and you will have to learn this language. It involves a lot of big words like “malignant hyperthermia” and “sevoflurane”, and one day you will actually find yourself having a conversation with an anesthesiologist regarding the use of “TIVA vs propofol for induction” and you will wonder what happened to your real life. You beg and hope and plead that this doctor and his team really does know the best mixture of medications for your child whose body likes to do crazy things when its under GA (general anesthesia), but ultimately, you will learn that you have to trust. Just trust. You will also learn that nobody believes you about your child’s extreme tolerance of the “happy juice” medicine until they are muttering under their breaths about how this is enough to make a horse fall over giggling pushing in their fifth vial of medicine and you will have a brief moment of smugness at knowing more than an anesthesiologist.

You will learn that you don’t really want to walk back to the OR with your baby. It is better to leave them waving happily in the crib while the nurses wheel her down the hallway. You will walk out that door with a firm determination to not look back and to not let the tears fall, not yet, because you will not leave her with a view of a crying mommy. You will be strong. You will force your brain to think about food because you will have likely been “NPO” (nothing to eat) along with your child, and you have 4 texts on your phone asking if you’ve eaten yet (from your mother who will always be your mother and worried about you eating, and from your friends who know your routine) and your husband (if he is there, cause sometimes he can’t be) – but still you hear the voices telling you to go eat. So you do. Because you know you will be in a bad place without something in your stomach, and because it kills some time that you don’t have to be in “family surgical waiting area”.

You will go and get your food and you will bring it back to the area they have set aside for the families waiting for their children in surgery. You will realize this area is it’s own little microcosm of society. Strange things happen in that waiting area. People wait. And waiting does weird things to people. People get good news and people get bad news and their reactions are palpable. Some people bring in entire camps of people to wait with them. And others huddle in their coats not wanting to talk to or look at anyone else. Some people raid the vending machines like a zombie apocalypse has just occurred and you will want to yell at them because they took the last five packs of plain m&m’s and all you really effin wanted was a pack of stupid plain m&m’s. Some people feel the need to call every. single. person. in their contact list and loudly explain to them every. single. detail. of what their child’s surgery is going to entail. You will learn to spot those people from a mile away and set up your own camp far far away. you will also learn to bring headphones to block out this information.

You will learn that you can pack a hundred million jillion things to do to entertain yourself or occupy your mind but you will not be able to focus on a thing. your brain will still be stuck willing the anesthesiologist to please do a good job and praying with every fiber of your being for the surgeon to do a good job and for your baby to be sleeping peacefully and having good drug induced dreams. People will text you and want updates and you won’t have any info to update them with and you will feel like throwing your phone against the wall because you’d like an effing update too but the nurse hasn’t called your name yet. your really good friends will know that you want to have funny stories texted to you during the wait and you will also get random insane texts from your random insane friends, and you will crack a smile, not so much at their goofy jokes, but at the fact that your friends know you and love you and know what you need.

you will learn that the surgeon will give you an estimate of time not unlike the cable guy. “It should take me between 45 minutes and 4 hours to complete my work, and then of course getting her woken up and settled in the PACU.” And you want to ask if he can estimate any closer between that range, but you know it’s futile anyways because your child ROUTINELY will take double whatever time they estimate. It’s just who she is.

You will learn that you hate knowing which chairs are the best in this family waiting room. No one should spend enough time in the family surgical waiting area to have a “favorite” chair/couch/tv. You will again wonder how you ended up here. And you will have to go play a stupid game like “angry birds” in order to get your brain off that crazy track of thinking. And you will find yourself unnervingly frustrated at the stupid pigs in the game that just won’t be crushed by the stupid falling logs. You won’t talk a whole lot in the waiting area. Even if you have someone with you, which isn’t always, you won’t feel like talking. in the same way that your hand stopped working while trying to sign the papers, your mouth feels like it won’t work. Or if it does that only swear words will come out. so you keep it shut.

And you will learn that JUST when you start to feel desperate for information, that is when they will call you “parents of Kendall….. parents of Kendall…the doctor will see you in consultation B”. And you will breathe a huge sigh of relief and run to the consultation room to hear how your child has done.

She is ok, it all went ok. You breathe again. You cannot wait to see her again.  You scrub your hands with the antibacterial sanitizer and you go to the pacu area and you can hear her/smell her/sense her from the doorway before the nurse has even pointed you in the right direction and you are there, at her bedside, holding her hand, letting the tears come finally because she’s all done and she’s in pain and she can’t even open her eyes against all that her little body is fighting and you want to scoop her up and hold her but you know that would be more painful and so you let her sleep and you put your face next to hers and tell her “mommy’s here i’m right here you did such a good job baby girl mommy loves you”.

and her fingers will curl around yours like they have done since she was first born and she will know you are there and she will relax because she knows that if you are there then everything will be ok. And you promise her that you will make it all be ok because you are her mommy and that is your job.

 

and that is what you will learn about surgery.

You will be ok through this though. Because you always are.

Save the Waiver.

Here’s where i’ve been the past couple weeks.

While i have physically been HERE, as in at home, my heart and mind have been geared towards the battle we are fighting to prove to the Great State of Illinois that our medically fragile kids are worth keeping at home. Illinois is in Legislative Session – and they are tasked with a ginourmous job – fixing the bleeding budget fiasco created by our former crooked governor, and now made worse by our current governor doing a scramble job. The two sides are locked in debate over how to fix the budget – cut spending, or increase income (tax revenue). Obviously anyone who has ever had a checking account realizes that most times, you have to find a blend of the two. Which is fine when you’re talking about “eating out less” and “a 15 cent payraise” being the two extremes you’re swinging between. But what we are talking about here is the lives and livelihoods of people. And while I really do understand the issues at hand, and understand all that has to occur for our state to survive it’s budget crisis, what it boils down to for me is that our waiver is not the place to do it.

I have delved deeper into political things than I had EVER hoped to in my entire life. I admit it. I usually vote based on pictures, colors of campaign signage, or if I like someone’s name. Poli-Sci was nowhere near my radar in high school or college. I just want my little world to be my own little happy place. Until it’s not. And then I get REAL involved. So yeah – the past couple weeks I have been listening to legislative sessions streamed live over the internet. I have tweeted  to senators and representatives. I have called their offices, emailed them til my fingers want to fall off. And the real kicker – it’s not just me.

See, when the “powers that be” decided that cutting out the MFTD waiver would be a good way to reduce some easy spending, they pissed off the wrong group of mommas (and dads!)

We are parents who are used to fighting for EVERYTHING for our kids. We are used to forging paths where bureaucracy and rule-makers have told us no path exists. We don’t hear the word “No” – instead we hear the words “Find another way”. Our kids have lived in and out of the hospital (more out than in for many of them), and we’ve been right at their bedsides fighting for the best care possible, educating ourselves, learning in 3 weeks what many doctors go to school for 3 years to grasp. We battle through sleepless nights, ignore our own illnesses, get up every morning ready to do it all over again – and we do not take No for an answer.

ESPECIALLY not from a bunch of politically aspiring bureaucrats who have NO IDEA what it is like to live our lives.

To take the words from a conversation that occurred last night in our discussion group:

(names are changed to protect the innocent!)

Bob: Well, so far all we are is a group of terrified, confused, tired, pissed-off parents.

Sue: No Bob – we aren’t “just” that. We are strong-minded, willful, determined and not defeated parents that will go to any lengths and fight any battle to keep our kids at home with us where they belong.

 

so true. It has been a very rough couple of weeks.

It is disheartening to feel like our story, our mission, our heart is not being heard. We are David fighting Goliath. The impression being given of us families on the waiver by the “powers that be” is that we are mostly the uber rich, have piles of expendable cash laying around that we SHOULD Be using to pay for our children’s ridiculously costly care. Some of those “powers” have even implied that it would be better if our kids just passed away. They cannot see the joy and love our kids, complex though they may be, are still OUR KIDS. That they are vital parts of our families, even with the added challenges that they bring. That we aren’t asking for handouts in ANY way.

The vast majority of people on the waiver have private insurance. That insurance, which we pay huge out of pocket premiums for, pays for most of our kids’ care. What most insurances do NOT cover, however, is nursing. Some of you who have read this blog for a while may remember that I was fired from my previous positions due to my inability to focus on both the job and the medical complexities of Kendall. We were in the process at the time of trying to get Kendall on the MFTD Waiver. Ironically – in-home nursing services started 3 weeks after i lost my job. If you go to the website we have set up to educate people about the plight of the MFTD Waiver in IL – you can read story after story about how other families are affected. One couple had to get a divorce (even though they were happily married!) in order to have the household qualify for services. What kind of country do we live in that rewards hard work and good strong marriages by telling them they’re on their own – while freely handing out payouts to those who are not even asked to prove whether they are tax-paying citizens? Our state has begun punishing the hard working, tax-paying, barely making ends meet middle class – and the ones caught in the worst of it are some of the most helpless children.

When this first started heating up, the plan was to just quietly let the waiver expire-129 (the state gets “the waiver” from the Federal Government via a renewal process every few years). When our outrage started to hit the right ears over how THAT was a bad plan (thanks to everyone’s help signing the petition – the head power that was receiving the emails must have realized she was going to need to go with plan B!) – and plan B was put in place. Plan B is what is going on right now.

Under this new budget that the Legislature has approved and is waiting Governor approval at the moment – the waiver will be renewed, but will be restricted to families making under 500% of the poverty line. I am sure that this sounds like an exorbitant amount. For a family of 3 (2 parents, 1 kid), this would be an annual income of roughly $97,000. To cover roughly 50-60 hours of nursing per week, the annual cost of JUST THE NURSING would be $188,000. Now, I’m no math whiz, but that seems to be an upside down number. You cannot physically spend more than you make. Well, you CAN, but that only lasts for so long. (see exhibit A, the IL state budget. which is why we are in this whole lovely predicament).  The point being – a family needs to be making roughly 2000% of the poverty line to even HOPE to break even with the cost of nursing, the cost of private insurance, AND covering mortgage and bills. So while I am sure the politicians think they are being MORE than generous by setting the income caps “so high”, it still doesn’t work.

In no way do any of the families on this waiver feel “entitled” to these services. We have no problem with a realistic income cap, or realistic cost sharing for the nursing services many of us must have to survive. We just need to get the ear of a Senator to hear our real hearts. To understand that our families could be their families in the blink of an eye. No one plans to have a child who needs intensive medical care every hour of every day. It just happens. Sometimes at birth, sometimes via an accident, always unexpectedly.

so what would you do – if it was your child? What would you do if you were faced with the choice to let your child’s care suffer, and keep them home – or hospitalize them permanently? Can you even put yourself into those shoes, imagine having to make such a decision? I know that as moms, chances are very high that at some point – you’ve spent the nite (or a couple nites in a row), up with worry over a fever that won’t break, or the vomiting that won’t let up, or the coughing that sounds like a lung is coming up. You hem and haw over whether you can handle this at home or if its time to go to the ER. You hope that THIS dose of antibiotics, or THIS round of cool washcloths will be the key to helping your poor sick child. And then you breathe a sigh of relief when you feel like they’ve rounded the corner, and life goes back to normal, and you get to sleep in your own bed again. But for families like ours – and the 499 other families on the waiver – “normal” is just a term. IMG_2711 Nights like those ARE our normal. Except in our homes are the pieces of equipment and the medicines they use in the ER, or the hospital rooms. Some people even have ICU level type care happening in their homes every day. And when THOSE measures start to fail to turn things around – stuff gets real. Real fast. our lives are lived at a level of adrenaline pumping speed that TV shows can only attempt to capture.

None of us can ever fathom driving our kids to the hospital, checking them in, then walking out those doors to resume our “normal” lives. But if this bill passes as is – it is a VERY real decision we will all be forced to make.

Could you?

 

Please help us spread the word. Share this post on facebook or twitter (if you click on the hovering “share” thing to the left hand side it will give you options. If you know who your IL Senator or Representative is – give them a call and tell them you do not support this part of the “SMART Act” of HB 2840. Ask them for a “trailer rider” that would eliminate the section regarding the waiver on pg 81-82. (They’ll know what you’re talking about. And if they act like they don’t – they’re playing dumb. Or they really didn’t do their homework at all, which is even scarier.) Direct them to the website – we have listed tons of info and resources there that show HOW we are willing as a waiver to cut our own costs, which will result in REAL savings for the state. Even if you don’t live in IL – share the website. We just need people to be aware of what is going on. It starts with IL being willing to “let their most vulnerable citizens suffer the consequences”. Which states will follow suit? Why not take away the care they need, and oh well – if they pass away because of it, at least its less money they have to spend keeping them alive? This isn’t the America I grew up believing in. I am shocked at the callousness of many people who we have May-66interacted with in our attempts to be heard.

I’m starting to ramble now. I’ll wrap it up.

Please help us spread the word.

Do it for this girl, who wants nothing more than to just be at home with her sissies, and not in the “hos-bit-toll”.

 

Do it for all the kids who deserve to just be at home with their families – regardless of diagnosis, prognosis, or how hard it may be night in and day out to give them the care they need.

 

Do it for all the moms – so tired, so determined, so full of fight because fight is all they have left.

 

Fightin’ on~

Terra.

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