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.


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