Sunday, April 12, 2015

Happy Birthday Nate, Sorry Your Party Was So Lame.


On April 1st Nate turned 5!  It wasn't quite the day we were hoping for.  Nate picked up a cold at school and by day 5 things were pretty grim.  When Nathaniel gets sick, things get kind of crazy.  We have a machine that monitors his vitals and I cannot tell you how scary it is to put him to bed at night with his oxygen numbers dropping and his heart rate rising.  For days Annie and I were up all night (literally) and living with cold ice in our stomachs and what felt like an elephant on our chests.

Every 10 minutes or so we had to go into his room to clear out his trach, reposition him, trouble shoot some pain he had or just comfort him while he worked to breath. It's been relentless.

It scares me when Nate gets really sick.  He looks like he can barely breath and although we have a ton of experience dealing with things like this, we never know how much his little body can take.  I go to work wondering when I'll a get the call from Annie that she called 911.  On his birthday, things got really bad and Annie took him to the ER.  The next morning he was gasping for air (this just shouldn't happen to a ventilated kid) but we kept making adjustments to his vent settings and managed to get him comfortable again.


By Day 2 his lungs were expanding again after some significant collapse.  Thankfully, after 3 days, Nate was cleared to go home but coming home from the hospital is in many ways worse than being in the hospital.  He is still getting four breathing treatments a day and needs lots of suctioning, even a week later, and just isn't feeling great.


Nate has SMARD but because we live with it everyday, we forget how tenuous his hold on life is.  Nathaniel is on life support 24/7.  He lives on an edge and even a cold can do serious damage, or even kill him.  When he gets a bad cold - nights become stressful and sleepless and Annie and I always end up sick to boot.  By the end of even a mild cold we are exhausted, sick and our nerves are frayed.  In the hospital we at least know he's safe and have wonderful help that allows us to get more sleep than usual. 

In fact, Nate doesn't even mind the hospital after the doctors are done prodding him because he gets a parade of people coming in to play with him.  Plus, he was terrified of having his IV removed.  He would have stayed forever so long as we kept the IV in.  Seriously, I'm not evening making that up a little.  Observe:


Nate finally got around to celebrating his birthday and mostly enjoyed it.  He was excited about the decorations, the scavenger hunt and the "space" cake Annie made.  Unfortunately over the last 4 or 5 days he developed some sort of pain in his hands and feet.  Any time we move his arms or legs he cries out in pain and says his feet or hands hurt.  We can barely move him without it causing him a great deal of pain.  On top of this he's lost much of his strength.  He can't lift his arms up above his shoulder height anymore and he has trouble playing with his toys.  We don't know why it's happening. 

As issues pile on and sleepless night after sleepless night add up we feel like we're cracking. It's relentless and brutal on your morale and emotional state.  I honestly feel like at any moment I could just snap and start digging holes in the back yard laughing hysterically. 

So even though we're home and Nate isn't in immediate danger, we're back to sleepless nights as he suffers from these new pains in his limbs and continues to recover from this horrible virus. 

But he is delightful and honestly, the bravest person I know.  Captain America is a close second though.

Why am I writing a blog post about this?  We don't feel like victims.  We know we have some great things going for us but I think sometimes it's just good for others to know what it's like on the inside of a family with a disabled member.  We're exhausted and worried but we love Nathaniel.  We love Nate and we love him exactly as he is.  Nate having SMARD has changed our lives for the better.  As with all great things though, you have to earn it. 

 
 

We're happy to earn him.






5 comments:

  1. You guys are so awesome! Of course we don't deal with anything nearly so intense but we have come close. We know how hard it is, how crazy-making it can be. I agree that it is good to let people know. It's just too big to keep in the corner. Big hugs! I wish I could give you both some of my sleep.

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  2. Thank you for sharing Nate's story. After reading your post I realized how much I take for granted the fact that I have 3 boys who have a pretty easy life compared to Nate and others who deal with challenges every day like his. Nate is such a sweet boy, with a great smile and such an awesome little voice. I love to hear him talk! I hope and pray that he will be able to improve each day and that his parents will have the energy they need too! Love you all! The Andersons

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  3. I am so grateful that you share your lives with us. All of us Puriri's pray for Nate in every family prayer and now we know what to pray for specifically. Much love to you all. And a Happy Belated Birthday Nate! 🎉🎈🎁

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  4. Thank you for sharing! Even though our little girl has SMA and I understand some of your battles, this helped me to be grateful that we haven't been inside the hospital since December! Small victories, right!? Being in the comfort of our own home is something I've come to appreciate so much, even though it is very daunting knowing she is solely in my care. I'm so sorry to hear Nate has some pain and has lost some strength. I to understand how hard that aspect is. But thank you for sharing that adorable video. His voice is so sweet along with his personality. Much love and happy 5th birthday!!!

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