What I wish I had known, what I got right.

        So I have decided to make this post about things we  have learned the hard way with Feisty Pants.   Maybe the next parent at the start of the jungle ride can take a hint and not make themselves quite as frantic as we did at first. Things I wished I had known sooner, and things I'm glad I guessed right. (I pretend they're flashes of inspiration and wisdom, but I ain't even fooling me. I got lucky.)

       I wish I had:

          1)Lightened up sooner. At least, lightened up our toxic load sooner. Feisty Pants  is immunocompromised due to not swallowing properly.  So when we first brought her home I went nuts sterilizing EVERYTHING.  It was shocking to me to find out I was causing her to have problems by cleaning with bleach. Everyday. I am just bright that way.  I eventually learned that harsh  chemicals are as big an airway irritant as anything else. I learned to switch to all natural cleaners and things got a little better. I got a non toxic air cleaner (read that as not an ionizer) and things got better again.  I wish I had done that from the start.

         2) Not lightened up over what seems to matter.  I took up yoga when FP was a toddler.  One of my best decisions ever. But I'm completely self-taught and NOT a size two.  So when others came by and I was trying to squeeze in a few poses, I would stop out of self -consciousness. Took me a while to not do that.  Now, screw it. You come by when I'm busy I just keep working.  If that means you see my chubby fanny in the air trying to do a downward facing dog. So be it.  Don't laugh out loud.  That yoga is what keeps me from hitting people with sticks.  Same goes for when I am signing petitions or annoying my congresspeople with emails.  I believe that if I want to raise moral children I had better damn well  try to exemplify those morals myself.  Change starts with me. And since any work I don't finish on time means I am giving up sleep, felony assault might begin with me too.  And lest I sound just bitchy, think of it this way. What would your response be if I walked into your job, sat down and put my feet up on your desk and wanted to kill some time?  This zoo is my workplace.

          3) Not expected Doctors to tell us all our options.  Silly Mommy and Daddy, we thought doctors would tell us everything there was to know about FP's condition and all the treatment options.  Her case is complicated.  (I could give the string of initials for it, but lets just save time and leave it at severe spastic CP) A good percentage of the time they don't know which options are best- or even all that are available. And sometimes, they don't want to tell you because the best option is only available at a competing hospital or they know your insurance will not pay for it in a million years.  ASK QUESTIONS- pushy annoying questions.  A LOT.  And make friends with google (or bing or whoever your fave search engine is). 

        There more things I'm sure but those three I think about often. As for what I'm glad I did, I am glad I:

            1) Stuck to my guns.  Lots of doctors and several hospitals wanted me to have Feisty Pants trached (a tracheostomy- a procedure where a hole is cut in her neck and a tube placed in it).   Every instinct I had sceamed NONONONONO.  So I didn't.  And when we said no, several got a little annoyed. A few sent in social workers and case managers to "explain things" to me.  I found my response was to become almost inexplicably angry. So I point blank said no and that if necessary I would consult my attorney.  I then took her to a better hospital (after researching on google). And lo and behold, I was right.  I was lucky enough to get FP into one the best children's hospitals on the planet. And they told me the other doctors were not considering other less drastic options.  (Probably out of fear- the right option involving waiting to do the right procedure for a what turned out to be a few years, which they were afraid to do)But for the record, we all waited until she was strong enough, removed her tonsils and adenoids and BOOM- we went from 50 hospitalizations to NONE.  She still gets sick but not so badly that she needs to be admitted. And no scar in her perfect little throat.  (Shut up, I take my victories where they come no matter how small)

          2) Kept the critters.  Everyone told me to get rid of our cats and dogs.  But this journey is not just about keeping her lungs clear. It's also about rewiring her brain. Pets teach us a gazillion things about love and joy and empathy. So we went home and ripped out all our carpets. I don't know anyone who has fond memories of their first stainmaster.  Two things happened- one, Hippie Pants' allergies got better and two, turns out Feisty Pants is not allergic to cats and dogs at all. Always question the killjoys.  Always.

           3) Listened to one great piece of advice from a not-so-great personality.  We had a consulting neurologist come in when FP was in the NICU.  A pretty good doctor.  Personality left something to be desired. ( I am convinced most neurologists have some kind of personality issue. )  But you know what, I don't care if you look like a cave troll or have the personality of Dr. House- as long as you have his brains.  And what this person said was"With a brain injury of this type, it is never a matter of what's gone.  It's always a matter of what you get back" It was a lightning bolt to my soul.  It took that moment to realize I could dwell in her disability or dwell in her possibilities.  And that makes all the difference.

In praise of Halloween

 

       I don't know why Halloween seems to be getting bigger every year, but I do like that fact.  We're annoying about holidays around here anyway. I'm a sucker for any excuse to put up twinkly lights and juvenile paper decorations -especially when made by my juveniles. Feisty Pants' sister, Hippie Pants, is 23 and I still have her stuff from pre- k. We put up Christmas decorations on Veteran's Day (Suck it Grinches). Halloween goes up around Labor Day. 

        Some of it is, I don't like the heat, you see.  I spend all summer bitching and whining and counting the days til the leaves begin to turn and I can smell apples falling off my neighbors apple tree into my backyard.  A silly paper cut out of a witch or the crunch of leaves of underfoot and I'm ready to be magically transported to the land of apple scented everything and pumpkin spice anythings.

        Add to that the fact that Feisty Pants spent every Halloween (and many Thanksgivings) in a hospital room until she was six and every Halloween at home becomes a triumph. It's  Christmas and Carnivale and Day of the Dead all rolled into a sheer moment of "pooky" (the way FP pronounces spooky) awesomeness.  And my kids have inherited my sense of nerdy fun. Ghosts, dinosaur,dragons,zombies, ufos, bigfoot.   If its kinda weird, we love it.  Halloween really is our comfort zone.

        So, please, don't tell me its somehow evil. (I don't care)  Don't give me lectures on tooth decay. (The 10 yr old doesn't eat the candy so much as just lick it a little bit and the adults can look out for themselves)

Don't roll your eyes if I cancel appts on Halloween. (Who expects anyone with kids to show up then???)

And especially, well meaning safety nazi, don't tell me it's too scary for kids.  I don't think you're giving kids enough credit.  A little bit of the safe kind of scary is how they learn to deal with the real stuff.  And in Feisty Pants' case; scary for her is IV needles given by faceless monsters with lab coats and scary masks, the sound of helicopters taking her away from her family to scary people who do painful things to her without her permission in hospitals very far away,  medical professionals who just seem mean to her and cannot understand what she is trying to tell them because her speech is garbled.  Freddy Kruger ain't got nothing on an ER doctor popping a hole through your shinbone to insert an IO because you're too sick and dehydrated for an IV.

            So, every Halloween, we're gonna grow fangs and howl at the moon and run with the werewolves.

Lead, follow, or get out the way.

How to tell if a hospital is right for you.

             Feisty Pants is, as you know, disabled. By the time she six years old, she had been hospitalized somewhere in the neighborhood of 40 to 50 times. (That's her pediatrician's estimate.  We lost count after 2 dozen) While this in no way makes us an expert on anything medical, dealing with eight hospitals and therefore 8 "health systems" (the way hospitals label their bureaucracy and network of clinics and doctors) in several states does give us some insight. The actual count is 8 hospitals, 1 NICU, 6 PICU's, 5 surgical units, 1 step down unit, 8 peds wards, 8 ER's,  about half a dozen medical helicopters, 1 private medical plane and a partridge in a pear tree. All of which makes for a rather opinionated mom.

             So, how do you tell if a hospital (or even a doctor) is right you or your loved one?  It is hard to know until you had their care but there are several things you can do to make sure you make the right choice for you.  First, make friends with your favorite search engine.  Search on "hospital report cards + (insert name of condition or procedure here)"  or "best care for (fill in the blank) for kids/elderly/women/men/etc".  You can even search on individual doctors and find their educational background and certifcations- often right through the hospital's website.  Search the hospital's website. If they have received any commendations or awards for excellence, they will trumpet the fact all over their website.  My favorite award to see is Magnet status for nursing. I relax when I see that on a website.  If you can, find out who manages the place. Doctors who run hospitals run them better than administrators.  (My own doctor once said, " In a perfect hospital, you'd have doctors bossing doctors and nurses in charge of everybody.")

            There are also some things to look for when you are there.  Watch how the doctors interact with the other employees- especially the respiratory techs and nurses.  Are the docs respectful of their opinion? Do they listen to what the nurses have to say?  Hospitals that enforce the hierarchy too much are simply not going to give good care.  Nurses and respiratory techs are the people who are most hands on with the patients and generally have a better idea of how the patient is faring and how the treatments are working than the doctors.  And a good hospital works hard to retain good employees.  If the nurses are not treated very well or their opinions are dismissed- take my advice RUN, do not walk, away.  Do the people who work there seem happy at their jobs?  We all have good and bad days at work, but if everyone seems tense all the time, something is wrong.

           Are you encouraged to visit or even stay? If you are in charge of the patient's care (for say, your child or elderly loved one) do they encourage your questions and opinions?  If the people working there are not happy to see you, ask your self why. Does the place seem clean?  Seriously, hospitals are never very sterile but they should seem that way to an outsider.  Have you noticed their security people?  They should be in the background, but they should be visible.

                    Most of all, what are you instincts telling you?  Hospitals are stressful scary places for many people , but if something seems off or wrong, you should start asking lots of questions. If no one will answer you, that's a sign its the wrong place.  The people who work in hospitals know patients are often nervous and good ones go out their way to answer questions and do all sorts of things to make you feel at ease.  A little background info and a lot of "it's my body and I'm in charge of it" attitude will make all the difference in how you feel and make for better health care in the long run.

Dear Doctors, please learn better manners.

        I have a dear friend (henceforth known as Awesome Pants- yep I'm  gonna drive that pants motif right into the ground.) who recently had some relatively minor surgery.  In the midst of this, some routine blood work was done which came back as abnormal, which her doctors are handling ALL WRONG.   Not medically  mind you, they're good professionals and probably like their careers.  So they are sending AP to the right specialists to rule out all the right bad things. No, they are handling it badly as fellow frigging human beings.  Which brings to me one of my bigger pet peeves. I have a whole menagerie and one wing is dedicated just to the medical profession.  And it's my blog, so I get to pick what we  bitch about.

        So, dear medical profession as a whole, and doctors in particular, stop acting like unthinking jackasses.   We know you're busy. We know you're smart. Guess what? We are smart and busy too. So, stop either OVER explaining or UNDER explaining EVERYTHING.  In AP's case, you are driving a brilliant and very well educated woman nuts. You call her up muttering about abnormal results and tell her to see this or that specialist RIGHT AWAY. Without saying anything else. You're like a wyrd sister trying to freak out MacBeth.  Nothing's creepier or more sinister than a veiled curse.  Just take thirty extra seconds and say,"Hey, things could be a little better so I want to rule out every problem that could be so we'll both sleep better knowing it's not really anything. And if it is serious, we will nip in the bud and be easier on your health and your pocketbook."  Boom. Done. And no one had google anything or feel like their health isn't taken seriously.  And if you put it that way the patient will take it seriously without having those nervous "what did they mean by THAT" conversations with themselves at three in the morning.  I swear, you are all trying to get back at the rest of us for copying off your test in high school biology class.   Yes, we know we all get emotional and weird about our health. We're supposed to. It's called a survival instinct.  That's why emotions evolved in the first place.  So, stop acting as if we are stupid when we are just sick, tired, and/or  emotional because its our FRIGGING health we're talking about here.             

           Oh and on the other end of the spectrum, think before you act as if we are six years old.  Don't ask me if I know "to make sure my daughter is upright before administering a tube feeding". (No, normally I suspend her from ceiling by her ankles like a vampire bat before feeding her. Makes it more sporting.)  Don't ask if I "make sure to wash my hands often." (No, I like a good coronavirus.)   Most especially NEVER EVER ask me "if things were explained to me in words I could understand."  That's a quote from at least six hospitals' exit surveys.  How offensive can you be?  For the record, I speak well in one language, read in two and swear in six.  Ask me that question again and I will teach you new words.          

I guess I can't bitch ALL the time.

Ok, so if I am going to write a blog, (If I am going to blog? Is it a noun or a verb, or what? anywhooo) it shouldn't just all be me bitching about of everything that annoys me.  Even if that does give me enough material to write for several EONS. So in order to somehow mitigate my natural proclivities I have decided to write at least once in while about things I am grateful for.

So, THANK YOU:

         Thank you, every ER nurse, respiratory tech, paramedic, fireman, and police officer who has in some way saved my very soul by saving my youngest child's life.   You are amazing human beings- the faceless angels who appeared  when my daughter had trouble - or simply was not- breathing.  You showed up at 3am with oxygen tanks and cpr skills and scary but awesome pieces of medical equipment and made my world a livable place all over again.  I can never remember your names and half the time your faces- I am too busy freaking out inside my own head.  But I know you are there and what your very presence means to my kid's chances. 

           And, to that end thank you to the drivers who took us to hospitals while the paramedics worked in the back.  And the engineers who made the equipment in the first place. And the cops who gave us a police escort when an out of state ambulance got lost in Philadelphia (and then gave me their card and said "call us if we can help with anything." )  And medical helicopter teams who showed up like action heroes and whisked away my kid to better care than I could give and looked me straight in the eye and said "it's ok. We're good at this. Its the best thing" so I could breathe. And the nurse who sat on the FLOOR of the hospital ER to get the IV going in my kid's foot while she attempted to kick you in the head as I held her in my lap.  And the respiratory therapist who literally held  my then 10 month old baby's life in his hands and squeezed the ambubag for 4 hours refusing offers of assistance until his hands cramped too badly to continue because the ambulance team from Rochester was held up in a snowstorm and there was no pediatric ventilator to do the job.

            Thank you to doctors who spend ten to twelve years of their life busting their asses to end up looking me in the eye and saying "I gotta be honest. I'm not sure here but we are going to try to figure this out together."  When you put your honesty and search for answers ahead of your ego, I know we are all halfway to the right answer.

           Thank you to NICU nurses who spent six weeks being a better mom than I could be at the time to my incredibly strong and incredibly fragile child while we all sat around and held our breath to see if she could even make it home just once. 

          Thank you to the social workers who work their fannies off trying to navigate the labyrinth that is trying to make sure these kids get the care they need while figuring out to pay for it and how to educate overwhelmed parents who have the attention span of hypercaffeinated 3 yr olds.      

          Thank you to PTs and OTs and SLPs and VIT's and MT's and teachers and teacher's aides and nurses (I am looking at you Jane and Mona) who get up every single day of their lives and bust their humps for not enough pay and NEVER enough respect to show Feisty Pants how to do things for herself. Usually while she is actively seeking to thwart you at every opportunity because all disabled kids really want is to control their own lives and HOW DARE YOU try to make them work so they can do that.

           And thank you to all those people out there who never met and still have not met Feisty Pants but prayed for her anyway.  If you were asked to pray for a little kid named Amara and you did, you were probably praying for my kid.  Along the way, someone told me they had a good reason to believe there were at least 30,000 people praying for her once.  That's a frigging city.  And it did not matter one whit your religion or denomination. It helped, I am sure of it. Thanks.

           So there it is, my gratitude list for the week (Month? I haven't decided yet)  There are a lot of people missing. Friends, family. People I can't think of at the moment They deserve(and frankly, should get better because I remember their names. Most of the time) a more personal thanks.  Maybe one day we will figure out a way to pay the universe back.  In the meanwhile, do me a favor. If you have ever done a good thing for a kid -especially a disabled kid - tonight as you get ready for bed, look yourself right in the eye in the bathroom mirror and say, "I make a difference in this world and I really matter." Please, for me and Feisty Pants.

The Manifesto of THAT Kid's Mom.

        I died in childbirth. So did my kid.  Modern medicine and our mutual stubbornness being what they are, it didn't take.  But it did leave us on a long and twisting ride through the jungle of raising a disabled child.  So I thought, perhaps, I could maybe give a few pointers to all those who encounter some one like us along the way. So here, goes, the manifesto of THAT kid's mom.

                  1) LIGHTEN UP- It's ok, really, we get it. Disability -especially disability in children brings out the wonky in every human being.  All our evolutionary fears of contagion and is this going to affect the group's survival, etc etc. It's ok. We get it. Take a deep breath and relax.  I won't be offended if you're freaked out when Feisty Pants looks like she's going to stop breathing if you don't judge when I offer her a hundred bucks to swear at a speech therapist.  And its ok for your kids to ask questions.  I've yet to have one child say anything even remotely rude. They ask better questions than adults. 

                 2) Don't help us to death.  Wanting to help is the other way we all get wonky. Don't get me wrong the instinct is amazing. (And humbling. And gives me hope for us all. I live in the most amazing neighborhood on the planet. My neighbors help with lawn work and snow shoveling etc. Without even being asked.  I am awed and grateful that we are lucky enough to have them.) But if you don't know how the machines we use work or your hands aren't washed, please don't touch things.  And, please, don't move anything. Even if looks like I am about fall over it. You really must do something, bring me a latte.  Coffee is worth more than diamonds around here.

                  3) Please get that we are BUSY and TIRED.  My daughter needs complete assistance with daily activities.  And she cannot swallow well. Or eat like other people. That means that someone has to be awake with her all the time. Her father and I sleep in shifts. We both routinely work 18 hr days. A bad day can go as long as 24,48, and one horrible week 72 hrs.  If you call , you're getting the machine. If you knock, walk in. If you need us - holler into the machine or just walk right on in.  We won't think you're rude.  Hell, we wouldn't notice if you were.  We're ok with drop ins who just knock and then walk in if you're ok that we are cranky and can't remember your name.

                 4) Don't feel bad.  It's not all a lifetime movie.  This is an adventure not a tragedy. We don't get out much.  So what. We're ok with how boring we are.  (After a few helicopter rides to an out of state hospital, you'd like boring too.)  So many people have expressed sympathy that we don't get to "do much". I don't know why.  No movie can be as adventurous as surviving your own death. No story as miraculous as watching your baby start to BREATHE again. No joy as incredible as hearing your daughter who you were told was going to be a vegetable tell her father that English boys are cute because they are English.

                       So there you have it. Thanks for reading.  I feel better and hope you do too.  We all make better choices when we relax.  Now I just gotta go find where I left my darn coffee...