Tuesday, September 13, 2016

'Roid Rage, Grief and a New Normal

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Ahhh, Fall.  It's on its way, I can tell!  Apologies for the delay in updating.  Life has taken us by storm in these recent weeks.

First, let me say thank you to everyone for the incredibly uplifting words of support after my last post.  We are surrounded by love, and trust me when I say that we feel it.

Week before last we had our follow up appointment with Dr. Perry (pediatric nephrologist) to see where we were with Ayden's treatment.  His body responded immediately to the meds, which was a great sign and a huge relief.  Within days of being discharged from the hospital he had let go of loads of pent up fluid and his swelling vanished.  Dr. Perry took one look at him and said she could almost guarantee he was in remission just based on appearance.

After spending some time with Dr. Perry asking more questions and taking more notes in my nerdy NS binder (I tend to be a bit of a control freak and need to compartmentalize my anxiety into something tangible), we were sent down to the lab one floor down to get blood drawn and submit his urine sample.  Now, lab work is never a pleasant experience, but this was really stressful.  The employees and techs were all very nice, but nobody seemed to know who was on first.  When I mentioned the urine sample I was met with a blank look and then the tech stammered something about having no order for a urine screen.  "He has kidney disease; of course we are screening his urine,"  I said.  Another tech piped up and said, "The CBC will check protein levels."  I wanted to ask her what planet she was from.  Instead I said, "Again, he has kidney disease.  We have to screen his urine to make sure there is no protein in his urine."  ...

 "Okay, we'll call the pediatrician for clarification."

"The pediatrician didn't order these tests. "


"The nephrologist ordered these tests."

*more crickets*

"Dr. Perry.  She's one floor above us.  Name should be on the order...  I can go get her---??"

The tech ended up hand writing Ayden's name on a specimen cup.

The blood draw was equally enjoyable.  The phlebotomist could've been Doogie Howser's younger brother.  After sticking my baby in one arm he turned to me and said that he didn't think he got enough blood so they were going to stick him a second time.  He must've read the fury on my face because he went and got someone more experienced, and she got it in no time flat.  In between screaming bloody murder and choking on his own sobs, Ayden kept saying "I wanna go hommmmmmme!!!"  It was awful.  Again.  As soon as we got in the car to leave I called Dr. Perry's nurse and asked that she touch base with the lab to make sure everything was sorted out.

Pre-game.  Happy.

Post-game.  Not.Amused.

The next day the nurse called and said that Ayden is IN REMISSION!!  We were overjoyed at this news, to say the least!!  He finished one more week of daily doses of steroids and is now tapering for the next four weeks.  He will be considered in remission unless/until he relapses.  We will regularly test his urine for protein and will call the neph in the event that happens.  So for now, his diagnosis is nephrotic syndrome caused by Minimal Change Disease or NSMCD.

One of the side effects of steroids (besides the awesome mood swings/roid rage) is a compromised immune system.  We have been trying to find the delicate balance between not keeping our kid in a bubble and letting him be a kid.  In spite of our precautions he caught a cold last week.  This sent me into sheer panic.  I loaded him up on Elderberry and thankfully his cold was very mild and his urine screens are all coming back negative. (PHEW)

This whole process has been a learning experience in so many different ways.  Not only are we learning about his disease and treatment we are learning to navigate our own emotions.  Having our baby diagnosed with a rare disease has thrown us into a tailspin of grief.  For the past couple weeks I have found myself in a terrible mood.  I'm cranky, irritable, anxiety riddled and exceptionally impatient.  It finally occurred to me that the reason for this is that I am angry.  I am filled with a carnal wrath that I can only liken to a mother bear defending her young against danger.  I want to confront this NS Monster and rip its gnarled claws off of my baby and snap it in two.  I am furious that my baby is going through this, that he has been robbed of his "normal" childhood and now will face the rest of his life with this disease.  I am both devastated and angry that he will be that weird kid with the weird disease and the weird medicine that makes his face swell.  Childhood is hard enough without having to be the fat faced kid or the weird sick kid that can't eat the snacks everyone else can because he has to watch his sodium intake.

Those eyes, tho <3

While we were at the pediatrician's office last week to make sure his bug wasn't anything more serious, the dr. asked us how we were doing in all this.  I tried so hard to hold back my tears but couldn't. I told him it felt like we are in mourning.  Ayden's normal life died and we are mourning that tremendous loss all while being forced to accept a new normal that is anything but.  The ped had tears in his eyes when he said, "I think you've said it the best way it can be said."  In all his years of practice he has had only one other patient with NS...

I know that Ayden was given this life for a reason.  He was meant to be our son, he was meant to have this disease and we were meant to navigate these uncharted waters as a family.  Victoria Strong, mommy of Gwendolyn Strong, recently blogged about the emotional process of expecting her third baby after losing her firstborn to SMA, and in her post she said, "...life can't be orchestrated into comfortable predetermined paths of our choosing."  That truth hit me hard.  Try as we might, we cannot control every aspect of our lives. We are in God's hands, and He mapped out our journeys before we even took our first breaths.  The most we can do is trust, and I will freely admit that I am struggling greatly in that.

Earlier this year a friend's young daughter was diagnosed with Type 1 diabetes.  I reached out to her and asked how she coped through the anxiety and worry.  Part of her response in particular has given me immeasurable comfort:  "It's a grief process, that life isn't what it was.  But that doesn't mean it won't be great."

Amen to that.  NS cannot keep my baby down.  His life will be GREAT.


Tuesday, August 16, 2016

Life is Like a Box of Chocolates // A Little Life Update

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Phew.  It's been a whirlwind few days.  Actually weeks.  Warning: long and heavy post alert.  If you follow me on Insta or Facebook this will be a recap with a bit more detail.

At the end of June I had scheduled a week off of work for some R+R/time home with my loves.  I had planned a ton of fun day time outings for Ayden and I while R was at work and was looking forward to spending a lot of time in my yoga pants.  Top knots + no makeup fo life!

All that changed when Ayden woke up grumpy from his nap one day and then had a fever by bedtime.  We noticed his tummy was a bit bloated and that he just wasn't himself the next day.  A few days later we took him to pediatrician after he still wasn't 100%.  The ped said it was likely a stomach bug and some constipation, told us to ride it out and give him some probiotics.  We went home.

By that weekend things were still miserable; Ayden was showing no signs of improvement and was a hot mess.  Long story short, after three trips to Urgent Care during which he was poked, prodded and tortured in every way possible, he was finally diagnosed with lower lobe pneumonia. (Note to self and other parents: lower lobe pneumonia presents with g.i. symptoms.  Who knew.)

The following week we saw the pediatrician as a follow up, who said in hindsight all the pieces now fit and would indicate pneumonia.  Womp.  He also went over the blood work that was done at Urgent Care and said there were a couple of things that looked off (low protein, somewhat low calcium) but that we would revisit in a month after Ayden's little body had a chance to recover fully.  Perfect.  We went home.

Fast forward to the end of July.  I had another week off of work (I have a crapload of vacay to use up) and Ayden was feeling great, so we finally got to do some of the fun things I had planned previously.  We had a great time going to the beach with friends and tidepooling, visiting the museum to see Sue the T-Rex, going swimming, etc.  We ended the week with a family trip to Avila Valley Barn, which was super fun!

Duck lips?!  Seriously?!

The first week of August came, which meant Fiesta here in Santa Barbara.  We had a blast at the park with Ayden even with all the dried grass and dust flying around.  However, later in the week Ayden woke up with puffy eyelids.  This had happened when he had pneumonia, too, and the dr. had said it was likely an allergic reaction to the bacteria causing his illness.  At that time the swelling went away quickly with Benadryl.  So, off to grab the Benadryl I went.  By Friday there was no change and his appetite was pretty crappy.  Ayden's personality was still normal and he was happy, so we figured he just needed stronger allergy meds, so I put a call in to the pediatrician.

We got to the ped's office at 10:45 on Friday.  We didn't get home until after 3:00p.m..  While we were there, the doctor said he was concerned that this was much more serious than an allergy, that the swelling would have responded to the antihistamine if that was, in fact, the case.  He suspected renal issues.  c r a p.  He ordered blood work and a urine sample.  Waiting for a toddler to pee on demand is like watching paint dry, first of all, and when it comes to having to pin your baby down to have his blood drawn...  ugh.  No words for how awful that is.  This time R held him for the draw and the whole time Ayden was crying "MOMMY!!!!  MOMMY!!!!" as I told him through my own tears that I was close by and that it was almost over.  Freakn worst.  The ped told us to go home and that he would call us when the results were in.  We went home.......

When we got home Ayden and I snuggled up on the bed and fell asleep.  The next thing I knew, R was gently rubbing my arm and whispering, "Babe...  Babe...   The doctor called.  We need to go to the hospital."  Ayden's lab work came back and was alarming.  His protein and calcium were still low, and there was protein in his urine.  The pediatrician called the nephrologist (kidney specialist) and they both agreed that Ayden needed immediate attention.  They called the hospital and warned them of our situation so that they would be ready for us.  We frantically packed bags and got ourselves out the door.  Friday night was a blur of nurses, needles and beeping machines and a diagnosis of nephrotic syndrome.  Simply put, Ayden's kidneys aren't working properly; instead of holding on to protein and using it for energy, it is leaking into his urine, causing swelling due to fluid build up in his tissues.  This explains the low protein levels in his blood.

Saturday afternoon the hospital pediatrician said that Ayden's blood work showed a tiny bit of improvement, so the nephrologist said he could go home and gave us strict instructions to see her this week. (By a miracle the nephrologist planned to be in town this week.  She is actually with UCLA Children's Hospital and comes to Santa Barbara only once each month.) We have an appointment this Thursday morning and will see where Ayden's progress is and will have more of an idea of what to expect in the coming weeks/months and how to handle it.  In the meantime Ayden is on steroids and a very low sodium diet (what does that even mean?? I need a number, people...) to help his kidneys heal.

The nephrologist was kind enough to call me Saturday before we left the hospital.  She had been consulted and kept up to speed on every facet of Ayden's treatment by the incredible nurses and doctors at Cottage Hospital.  She said that nephrotic syndrome isn't super common in kids as young as Ayden and that while it usually is outgrown by puberty, we can expect recurrences throughout his childhood, as flare ups are often caused by infections (i.e.: a cold, etc.)  While we don't know for sure what caused Ayden's case, she suspects that the pneumonia was the trigger.

The only upside was the huge playroom on the pediatric floor!

Of course my kid won't sit still for the pic ;)

Special delivery!


Needless to say, it has been an overwhelming few days.  Anxiety is at an all-time high.  Seeing my baby laying in a hospital bed and hooked up to an IV was surreal.  It sounds so cliche, but it felt like something that happens to other people, not us.  I felt the strangest, saddest connection to the other parents in the pediatric unit.  There is an unspoken bond even between strangers who have sick kids in common.  And that is a bond that I never thought I would feel at this magnitude.

We are so blessed by the incredible amount of love and support we have received throughout this ordeal.  The messages, calls and texts were pouring in.  Ayden even got a surprise delivery at the hospital of some new trucks gifted to him by some of our friends and had some special visitors.

We are remaining as positive as we can (R more so; I'm an anxious sort...) and are grateful for the amazing care Ayden received.  My mom said it perfectly when this all started: The Lord knew before we did.  My aunt later said that this was not a surprise to God.  We know that this was part of Ayden's plan even before he was born and that everything that happens is for a reason.  We have faith that everything will be okay and are so very grateful to have the UCLA specialist on our team.

I will update once we know more.  In the mean time, please keep Ayden in your prayers.  As Forrest says, life is like a box of chocolates.  You never know what you're gonna get.