Sunday, April 19, 2015

Nate's First Pet

A quick update on Nate's health: We've been home for the hospital for two weeks now and life is slowly getting back to normal.  Nate still has extra junk in his chest that we have to manage, but overall it's much better.  The swelling and pain in his extremities has improved.  We've been getting out of the house a bit more.  Things are headed in the right direction.  The biggest challenge now will be helping Nate to regain all the strength he lost from being sedentary for nearly four weeks.  He is significantly weaker now and it will take some hard work to get him there, but we think he can do it.
Since Nate has had such a hard time of it lately we decided it was time for him to get his first (and only) pet.  Last week, while heading to physical therapy a lead bug landed on Nate's knee.  He was out of his mind excited about it and pleaded with Annie to contain it.  Annie grabbed a plastic container and they brought him home.  Nate named him Buggie and they were fast friends.
Now you may think I'm kidding in saying that this was Nate's pet but I'm really not.  Nathaniel would take Buggie out at least once a day and play with him.  He learned to gently pick him up by his wings and remove him from the container.  Then he him.   
He had a lot of fun.  Maybe even too much fun considering it was a leaf bug that just sat there.


Although still experiencing some pain we thought Nate was up to attending the annual Sweatin For Sammy fundraiser.  Every year Nate's cousin Sammy has a fundraiser 10k for her benefit and this year he LOVED it.  He was not happy at all that we had to leave. He was really excited to get back in his power chair and use it for the very first time in the kid's run.
At first I thought maybe it was kind of cheating for him to use his power chair in the race but then we kind of leaned into and ended putting spikes on his wheels, Ben Hur style.  The other kids didn't stand a chance!

Uncle Colin psyched Nate up for the run before hand.  And then he was off.  Be sure to note the pure joy on this kids face.

If you tunr your speakers up and pay close attention at about 00:21 seconds you can here Nate say "It's so exciting".  The idea of Nate getting an adrenaline rush from this kid's race tickles me to no end.

Despite obviously coming in last place (we were afraid of what might happen to other children if we let him turn his speed up) Nate declared himself the victor, "I won" he yelled at the finish line.  I told him he actually came in last but he was in no mood to believe me, especially considering he had just received a shiny medal upon completing the race.
Should we be concerned that he strokes it all day and calls it his precious?
And if you remember a post from a few weeks back you'll remember that Nate likes to bring one of his classmates with him to places.  He calls them field trips.  That's why Iron Man tagged along.
So congrats to Jenny and everyone who works on Sweatin for Sammy, it was our favorite year and Nate had a blast.
It's hard to say exactly what Nate's favorite part of the day was (actually it was clearly the race and winning a medal) but one of the contenders was the arm painting he received.  Normally Nate isn't interested in face painting since he doesn't like the sensation of it on his skin but he really wanted something painted on his arm from the face painters.
Nate being Nate, he wanted a blue goose on his arm.......?  He really liked his painted goose.  In fact this blog post could just as easily be called Nate's first TWO pets.  He even named it.  The goose's name is Pancake.  That's right, he chose a blue goose and named it Pancake.  I'm not sure who is raising this kid but there are clearly some red flags.

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.