The Good the bad and the really really ugly

nicandduke

As a parent of a medically complex kid you find yourself working really really hard to keep them safe.  Protect them from things that make them sick, ensuring their world isn’t all that different from others and making sure they have the same chance at experiences as their friends.

Then something happens and you feel like an absolute failure at protecting them.  You see I can protect her from food and allergens and even bullies but I can’t protect her from the harsh facts of life, and one of those facts is the tragic death of her beloved horse.

Yesterday started as any normal day, we headed to the barn at lunch time to visit Zora (she got sick last week and needed some hand walking) but in the blink of an eye, everything changed.  Duke stepped wrong and broke his leg, and not a little minor break, it broke. I will spare you all the gory details but it was not pretty!

In that moment our entire lives changed, I went from saving her from all the hurts and harm to having no control over what was happening. In that moment she had to watch her beloved horse, her favorite animal on the planet die.  I couldn’t save him and neither could anyone else.

It was heart breaking to watch, it is heart breaking to even write about.  But I do because it helps to talk about it, it helps to know that in our world crappy things happen that we can’t control.

One day we’ll look back and this won’t hurt quite as much but today is not that day. Today we snuggle on the couch, I hold her hand and we watch her favorite show Supernatural. (And laugh at Sam and Dean)

Maybe tomorrow or the next day (or the next) we’ll talk about a new horse, not a replacement but a new one to love and invest in but for today we are just going to be.

Trying Times

To say that the last few months have been odd would be a total understatement to say that the last 48 hours have been insane would also be an understatement.

When covid hit in March I was being very cautious with Nic, keeping her home she wasn’t going to to the barn or the store.  We were using hand sanitizer and wiping down all surfaces.  As things progressed we started to open up and live a bit more normally.  Even though it wasn’t anywhere near our pre-mid march normal.

We started to figure things out like going to the store with a mask on, not getting real close to people and just making good choices.  Then the death of George Floyd hit, now this is NOT a political post and any comments as such will not be approved! Our world again has shifted.

As a family we had talked about going to dinner this weekend since the restaurants were open for outside seating.  I was nervous to be anywhere but home with reports of riots being in Aurora and surrounding cities.  I watched my normally calm 15yo worry about her best friends dad – who is a Joliet police officer.  She was texting her to make sure she was OK and that her dad was OK.  We did dine out on Sunday and it was amazing!

Then Monday hit and things got worse, for the first time in my lifetime there was a curfew for my city!  We went early to the barn so we were home prior, and now today stores are barricaded off or closing early.

Nic was supposed to hang with a friend, but her friend got in trouble so it got canceled. She texted another friend asking her to hang out.  In the normal scheme of life she doesn’t ask us first, she knows what she needs to do and can schedule her own meet ups.  When she told me today she was going to hang with her friend, I had to be a mom and tell her they had to be at someone’s house. They couldn’t walk around or be outside.  This is our world right now.  She can’t go anywhere because everything is closed and now she can’t hang with her friends.

Before you lecture me on first world problems (I am aware) but for a kid with POTS being able to do normal kid things is a huge win!  And right now we can’t do normal kid things when she feels able!

I can’t imagine our world getting scarier but then I couldn’t of guessed we’d be here today either!

7 years so much has changed

Having a medically complex child – a term I didn’t even know existed until a few years ago – is hard. It means your entire life is focused on keeping your child safe.  When Nicole was born she came into the world a bit early but nothing else out of the ordinary.  She was born while I was working for the church, so she came in the middle of the picnic, kids going back to school and the leadership summit.

We joked with the doctor that we had to get past all that before she could be born and she did!  She was a good baby, easy to take care of – hardly ever cried and fit right in!  Being the first girl she was dressed in pink – she had outfits she only wore once because she had so many clothes!

She stayed home with dad the first year, hanging out while he worked.  At about 12 months we put her in daycare with a church friend.  She fit into her home really well and did great!  Then the diarrhea started.  It was a constant to the point our friend started keeping track.  What did she eat, drink, etc.  It didn’t matter it was constant, down the leg ruin more outfits than should be allowed. So we took her to the doctor, they asked for stool sample – suggested she had too much juice.  Note that she’s the youngest of 5 so we weren’t knew parents, we understood the too much juice problem! (That was NOT it)

So we took her to a friend – who suggested some alternative testing and our whole world changed. She was allergic to everything!  So off we went to see a new primary care doctor. She sent us to a GI and allergist.  The allergist said she’s allergic to milk, soy, tomatoes, chocolate.  What ever we fed her she was allergic to!  The GI tested her and found so many things it could be.  But none, fit – and through it all my once healthy happy baby cried, screamed, and lost weight. At 2 she barely weighted 15lbs! She was tiny!! (Her older brother was born at 10lbs)

So we continued to search for answers, we put her on an elemental formula and things seemed to settle in.  She gained weight was happy – unless we let her eat ANYTHING!  1 cheerio could make her sick for days.  When she was 4 we went to another GI and was told she had FPIES – food-protein-induced-enterocolitis-syndrome.  OK this made sense and our diet didn’t change much.  But then there was joint pain and other weird symptoms and the random vomiting.

So 7 years ago – we went to the mayo clinic and saw what Tony still refers to as the Disney Land of doctors.  We spent 2 weeks there, seeing every doctor, specialty, and so many tests!  At the end of the 2 weeks the neuroligist who was about 80 and was maybe 4 feet tall!  Suggested we had POTS and asked if we could stay another few days for testing. I was done at this point! I said no we are going home.  He referred us to a doctor in Chicago and home we went.

It would be several months before we got a firm diagnosis that explained our symptoms.  I can’t say that Mayo was a success but it did get us to the end!  Hard to believe this child turns 16 at the end of this summer and is successfully managing her health on her own!  7 years hard to believe

The face of POTS amidst a virus

I was going to put this put this on social media but decided against it.  You see I don’t want to start a firestorm of what should we be doing or shouldn’t!

You see I have a medically complex child.  I often forget this because she’s been so much better since we pulled her from school.  We deal with the ups and downs and for the most part they are pretty mild.  Until she got sick.  You see when Nic gets sick it’s usually a hold your breath and hope that it stays mild, but when it doesn’t (And it usually doesn’t) we go to the ER.  We’ll get fluids, meds, and some labs – which generally come back abnormal but….yea

This past week Nic start vomiting on Thursday afternoon.  By Thursday night it was getting worrisome she was not stopping and we knew we should go to the ER, but we didn’t. Why? Because of the COVID-19 virus.  I didn’t want to expose her or us to anything off!  So we held off, we waited and waited and things got a bit better and then got worse.  So we went anyway.  And we ended up with very low potassium and other weird stuff, which resulted in her getting fluids and IV Potassium. If you haven’t had that let me explain the level of pain involved in getting this infused.  Imagine  your entire arm on FIRE!

The point is we waited when we shouldn’t of because we were afraid of exposing her to something that would only make her sicker.  When doctors and health professionals tell you to just lay low, to use social distancing, it’s not because of you it’s because of my daughter and the tons of other kids and people who are medically complex.  People who have weird (not necessarily weakened) immune systems.  You see when Nic gets sick her body doesn’t react like it should.  When we got to the ER her Heartrate was 135!  And her BP was 90/56.

Thankfully we had a doc who knew POTS and knew that some of those numbers are more POTS related than her being sick.  But my point is what if she picked up something in the ER? Then what?  What do we do then?

Please for the sake of everything let’s take this seriously.  Let’s take a few weeks off..so we can all get our lives back!

Its been a while

When I started this blog it was just to keep track of Nics symptoms, now we are more in maintenance mode and not much really happens.  It’s more day to day and horses and more horses!! (Here’s a pix of our newest one)

nic and phoenix

But today, today we did a thing!  A thing that I honestly didn’t think would happen!  But I should of known it would!

You see when you raise a medically complex child you learn to never underestimate them because God made them for greatness.  Not that he didn’t make all kids or greatness, but these kids, these kids were made beyond special.  Its like God knew that they would do amazing things but they needed to be super strong to take on the world and that is what this one is doing!

A few weeks ago she told me she was looking for a school that would help her reach her goal of training horses.  She found a school in Ohio the University of Findlay.  So yesterday I started looking at scheduling a visit.  You see we are headed to Virginia in April so why not combine trips.  I figured it was worth a shot.

Only there wasn’t anything available on that Friday, then I looked just a bit further and found that they are doing an open house on that day for their potential incoming equestrian students!  So I registered us.  This is it, this is our first college visit.  I am still in a bit of denial but one thing I have learned about this kid is that generally she reaches her goals.

You see God has big plans for this one!  And we are just going to make sure she reaches them!!

POTS SUCKS Still

POTS Sucks, this isn’t a new concept.  For those of you who are new to this blog, guess what POTS SUCKS!  Why? Well because as a 15yo girl life is kind of sucky.  You are dealing with emotions and hormones and relationships that are all new and hard to navigate.

I remember being 15 and while my life had been turned upside down I didn’t have to deal with all the other crap that my daughter does.

You see, we’ve let her start to take more control over her body and choices.  This means she is getting to try new foods, it also means that her disease rears it’s ugly head.  It means that not only is she dealing with boy/girl relationships and friends and all that stuff it also means fighting a body that doesn’t do what you want EVER.

It means losing weight and fearing that you may have to get a feeding tube because your body is not doing what it’s supposed to.  Last night I had to hear my amazing daughter fight tears because she doesn’t want to take one more medication, she doesn’t want to think about getting a feeding tube – and while we aren’t there yet we aren’t far.

You see a year ago Nic weighed 113lbs at her most recent doc appt she was 108, now she’s 105.  She’s not underweight yet… but if we continue down this path we might get there.  She should weigh about 115lbs, but we’d settle for a solid 110.

So here we are fighting again, unsure of where we go… but this is our life and we’ll figure it out and we’ll make sure that she is 100% successful!

Ohh How We’ve missed you October

When we got diagnosised 5 years ago (almost to the day) I walked out of the doctors office and cried.  I cried!  I cried because after so many doctor visits, 2 trips to mayo and 1 we skipped I knew what was wrong with my kid.

We would then spend 2 days in the ER in the next few weeks with low BP and we would get more drugs.  Over the next 5 years we would add some drugs in, swap some out and increase dosages for others.

We would fight schools, teachers, lunch ladies and coaches.  We would make decisions some good and some not so good but we made them. Last year when we finally decided to homeschool I felt really good about it. It meant good things, no more stress, just do the work and go day by day.  October came and went without much ado.  We didn’t really think about it.  Spring came and went and again not alot to think about.

Don’t get me wrong we still had POTS days but we had way more good days than the other kind.  Then 2019 hit and then October got here. And the SLIDE hit.  Came home last night to a child being unable to wake up. She was way down.  Today she called out of work. She never does that! Shes very dizzy and trying to just be human today.

You see with POTS when you have a bad day, it’s not about getting up and going to work it’s about just getting out of bed if you can!  So today we welcome October with not open arms, but yet here it is…so if you need me I’ll be under my desk hiding from October.

OMG What was that??

We’ve all experienced an adrenaline rush.  It might be a near miss in a car accident or seeing something scary on tv or a movie. We usually feel that quick rush, our heart rate increases and we may feel shaky after it happens. When you have POTS and you have one of these experiences it can be literally not being functional for days.

According to http://www.medicalnewstoday.com

An adrenaline rush is one of the body’s vital defense mechanisms. A stressful situation will trigger the release of the hormone adrenaline, also known as epinephrine, into the bloodstream.

Nicole has been struggling the last few weeks with more dizziness, headaches and brain fog – which we are attributing to her now being in drivers ed.  She’s had issues with her ears popping (which is new).  So yesterday when she went to work what she didn’t need was the day to essentially fall apart on her.

It started with her cutting herself with her knife (nothing serious) then one of the horses headbutted her near the eye and finally one of the more high strung horses spooked and reared on her.  If you haven’t had the experience of a horse rearing on you, it’s not what it looks like on TV or in a show.  Those are planned and controlled.  This is 1000lbs of animal not using any part of it’s thinking brain. You see horses are prey animals and when they feel attacked they do one of two things, they run or they rear.  When they rear they go up on 2 legs and act big.  (And because they are, well you get the idea).

She’s fine but the rush of adrenaline can cause her to crash for days.  Now normally this would be ok. She’d work today and then be low for a few days to recover. Expect her brother leaves for bootcamp tomorrow so she’s not going to be down until Tuesday. Which is her birthday, another work day and drivers ed. So essentially we are going to be crashing for a least a week because her body isn’t going to get a real chance to recover.

When I say I hate this disease I mean I HATE this disease!

10th Grade

When you started kindergarten I worried, would you be OK, would you be safe? When you started 1st grade we put structure in place (a 504 plan) to ensure your safety. You weren’t allowed to have stickers, anything you could lick or food from the outside.

When you started 5th grade we had an IEP, you weren’t keeping up with your peers.  I worried, could you keep up? How would you handle middle school? When you started 6th grade, I met with the team. I told them you have to watch out for her! She struggles, she doesn’t do as well as her classmates. Help her! Make sure she is successful!!

You started 8th grade, and I’ll never forget the team telling me, this girl will accomplish whatever she sets her heart on!

Tomorrow she technically starts 10th grade.  I say technically because she now goes online.  She will accomplish whatever she wants! I can’t wait for the next few years!!