Life after HUS

I just heard about, and read a story about a 2-year-old named Grayson.  I will share more about Grayson in a bit.  First, I’d like to share our story, and perhaps it will help you understand why Grayson’s story has had such an effect on me.

In May + June of 2014 my then 4-year-old daughter was having bouts of not feeling well.  It was written off as bladder infections, flu, and a few other things.  At the end of June I was in Mexico for work, as I sat in meetings my husband called to tell me that our daughter wasn’t feeling well again, the doctor was trying to decide if she should be admitted to the hospital for IV fluids or not.  At the end of the day, they decided not to admit, but he was left with instructions to take stool samples to the hospital.  Her output was so low, or just bad, that they couldn’t determine anything from the samples, so a lot of work, and still no answers.  If you’ve ever had to shuttle poo from your house to the hospital, you know it has to be done in a timely manner, and due to an error on their end and as I said there not being enough of anything to sample, it was ultimately a waste of time.

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Taken the day before she was admittted to Children’s Hospital.  That puffy face…

The next day she had no improvement, and since I was going to be flying home the day, after I patiently (um ya right, mama was freaking the freak out!) waited to go home not concentrating on anything and stressing out  being a 1000 miles away from my baby girl.  When I finally did arrive home after being away from my kids for a week, my daughter couldn’t muster the energy to get off of the couch and could barely get out a “Hi Mom”.  This was not normal, my usual greeting after 8 hours of work was a fierce hug and hundreds of kisses accompanied by the stories of what she had done since being dropped off at daycare 8 hours earlier.  In my gut, I knew something was very wrong.  I called a friend who is a PA and asked her advice, she said to keep push fluids, at this point our daughter was refusing to eat or drink anything, and if she still refused we would most definitely have to take her in for an IV to deal with the dehydration.  We finally bribed her with some Frozen.  Ana and Elsa helped us get through that moment and thank you Sweet Baby Jesus  our little girl drank!! She perked up within about 15 minutes and we thought okay, she’s going to be okay.  I in my head knew that she just missed her Mom so much she couldn’t function without me right??

Our victory was short-lived.  The next morning, which happened to be the 4th of July, we woke up to find her yellow.  A completely horrible shade of a very unbecoming mustard yellow.  Since it was the holiday, and I was tired of getting the run around, I reached out to a pharmacist friend for advice.  His was “take her to the emergency room right now”.  I knew he was going to say this, and I dreaded it.  For over a month we had been dealing with multiple trips to the doctor’s office, the ER, everywhere and they just kept telling us the same thing. She’s fine.  We can’t find anything wrong.  She may need IV fluids for dehydration.  But; we went.  We spent hours in the E.R. while they monitored tested, and again, told us “she’s fine”.  This is where I lost my shit.  She is not fine, she is a 4-year-old who hasn’t moved from her spot on that bed in the 4+ hours we have been here! That is not normal! Apparently I said some other things, but they escape my memory.  The point is, the Dr. took the time to run more tests.  Within 30 minutes he was back, outside our curtained door, and I could hear him on the phone, talking to our Dr.  Talking to someone else,  I could hear bits and pieces, words like counts, wbc, creatinine, and others that made no sense to me at all.  He then came in and told us we needed to take her to the Children’s Hospital, which is about a 90 minute drive from us.

At this point, my husband and I were in absolute shock.  30 minutes ago, we heard, she’s fine, you’ll be okay to go home and keep an eye on her.  Now it was get there, and get there fast.  When I asked if she needed an ambulance they said no, she was stable and there was nothing that would be done in an ambulance ride that couldn’t be done in our own car driving her there.  They would not tell us what was wrong with her.  My husband went to go take care of the boys and get them where they needed to be and he would follow me up to Omaha after they were situated.  I got in the car full of fear, shock, distress, and so many tears.  What was wrong with her?

As I drove, I prayed to see a state trooper, a county sheriff, anyone who could help escort me and get me there faster.  As I drove, I realized, I had a unconcious child in the backseat.   How would I know if she stopped breathing? If whatever was going on was getting worse?  I was freaking the eff out!!! Let’s just say I sped and hoped someone would pull me over.

We arrived at the hospital and checked in, everyone was so calm, and patient with me and so damn understanding as I silently willed them to hurry the hell up and check us in so they can fix my child!! She needs fixed, something is wrong can’t you see that? Don’t you know that?  I know you know that, I don’t want to see insurance forms right now, I want to know what the hell is going on!!  They did make it quick, but in that position, I was a mess, and every second I didn’t know who, what , where, and why, was killing me.

After what was probably 20 minutes we were taken up to her room.  5th floor. Not a floor you want to be on.  We were taken to her room, where we changed her into a hospital gown and they hooked up an IV.  The Dr. came in then, and as badly as I wanted to know, I wanted my husband more.  So we waited a few more minutes and just as he was getting ready to leave to check on other patients my husband came in looking as panicked as I felt and looked and we sat down.

“Your daughter has Hemolytic Uremic Syndrome”

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First thought 1. That’s not cancer I don’t think?  2. WTF is Hemolygaoidjh Ure;ak Syndrome???  We sat there dazed, not having a clue what this meant.  However we had a name, we were listening.  Sort of, my head started buzzing around the time I heard “mortality rate”.  Mortality rate?  She was dehydrated and tired, mortality rate?  She needs IV fluids (mortality rate) possible blood transfusions and dialysis (mortality rate) blood pressure can rise and possibly lead to mediation (mortality rate), acute kidney failure, creatinine levels, red blood cells, kidney injury, end stage renal failure, and more, so many more levels that I can’t even remember.

The definition of HUS is as follows – Hemolytic uremic syndrome (HUS) is a condition caused by the abnormal destruction of red blood cells. The damaged red blood cells clog the filtering system in the kidneys, which can lead to life-threatening kidney failure. – Mayo Clinic

Remember how I said my daughter was yellow?  She wasn’t jaundiced, she literally had so few red blood cells in her body, that she wasn’t pink. She was swollen from retaining so much fluid, she was exhausted and couldn’t sleep because of the 30 minute blood checks for the next 48 hours.  After that they were every hour.  Her fingers were poked so often we couldn’t take it.  Upon arrival we asked “how long will we be here”?  The response was, anywhere from a week to a month.  You see they can’t predict the treatment with HUS.  Your body and how it reacts to additional fluids and flushing the system determines how long you stay.  Our daughters kidneys were shutting down because her red blood cells were destroying themselves and her kidneys couldn’t keep up with all the destruction.  They were clogged….

The first 48 hours were the scariest of my life.  While we sat and tried to stay calm as they were prepping her for her first blood transfusion, both of us terrified and trying to console our daughter, a miracle happened. A nurse, lab tech, resident, I don’t remember who that sweet blessed person was, but they came running in.  Her last labs were trending up.  Trending UP! Something that we had prayed for so hard in those first hours.  Now it was sit and wait and see what happens.  Levels would trend in the right direction, then fall.  She hated her I.V. she slept most of the time, her puffy little body looking extra tiny and small on that bed.  She loved gifts and cards that were sent.  We were limited on who could and could not visit because of her being in isolation.  Her immune system was wiped out.  It was lonely, terrifying, and frustrating.  You say she has “HUS” and people don’t get it. They don’t know what it is.  We had a few friends who researched it and saved us with their kind words and the fact that they took the time to care, and learn about it, it was beautiful.  We didn’t feel quite so alone then.

The next 24 hours were a vast improvement.  Her labs were definitely on the upswing.  She was talking more, complaining about having to take a pole with her wherever she went, and peeing!!! Did I mention the peeing!! OM-lawd I had never been so happy for PEE!!!!!! We were sent home (ABSOFREAKINGLUTELY TERRIFIED) after a week in the hospital.  She was going to be okay.  We/she/us, were were “some of the lucky ones”.  For the first time in 2 years, she has no labs on the books.  For the first month after her discharge we had to go in for weekly lab work.  Then monthly, and then other things started to pop up.  Things that “can’t be directly linked to HUS”, but things that other survivors of HUS have had to deal with as well.  So in my heart, I know without a doubt,  what caused these issues for her.Her immune system can still be sketchy, and I apologize to the nurses who have to give her “pokeys” anytime the word comes up. The girl is scarred for life.

About a month after Scout was diagnosed, a little girl in her dance class was admitted to Children’s with HUS like symptoms.  It was confirmed a few days later.  Her story is so much different from ours.  You see Kate, had to have dialysis, had seizures, was in ICU, was very, very, very, VERY sick.  She spent a month in the hospital.  She has medications she has had to take because of the implications and complexities of HUS and every aspect of the body that it can affect.  Kate is doing better now, and this summer at the ball fields her mom and I shared a hug while on the verge of tears because our daughters were playing coach pitch.  Because they are survivors at such a young age.  Not everyone gets to wear that “survivor badge”.  And that’s what shatters my heart into a million pieces.  It brings back the words MORTALITY RATE and once again my head starts to buzz.

Sweet Grayson.  His Mama is a photographer, he has the sweetest face, and the biggest blue eyes!  He’s also going to be a big brother.  Two year old Grayson succumbed to HUS on August 15th 2016.  Again, the correct diagnosis was hard to find.  My heart, oh my heart. I have no words for his family.  Just know my heart and prayers are with you.  You can read Grayson’s story here.  Please take a moment to send love, light, prayers to this family.  No one should have to suffer through the loss of a child.

Via  Mayoclinic.com

Signs and symptoms of HUS can include:

  • Bloody diarrhea
  • Decreased urination or blood in the urine
  • Abdominal pain, vomiting and occasionally fever
  • Pallor
  • Small, unexplained bruises or bleeding from the nose and mouth
  • Fatigue and irritability
  • Confusion or seizures
  • High blood pressure
  • Swelling of the face, hands, feet or entire body

 

Remember “can include” does not mean, will include all, or will include any.  With our daughter they could never pinpoint where she contracted the E.Coli-o157-H7.  She tested negative for Shigella and E.Coli in all the tests that should have come up positive.  I pray you never have to deal with HUS, but should you notice any of the above, please seek medical treatment and don’t stop until you have answers.

And to those that know us, know we can be a bit overprotective and cautious when it comes to Scout’s health, but this is why.  To know that losing your child is a real possibility staring you right in the face makes you look at things in a whole new light.

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Celebrating her 7th Birthday earlier this month

 

 

 

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