Anatomy of a Trach

Before we had Nate, all I really knew about tracheostomies was that Christopher Reeves and the woman in the "smoking is bad for you" commercials had them.  So for those of you who are curious, allow me to enlighten you about this vital part of Nate's new anatomy.

Last July, an ENT surgeon gave Nate a tracheostomy, meaning there in an incision in his neck that goes through to his trachea.  I don't care to think about how this was done, but there it is, a hole in his neck about the size of a pencil eraser.  Into this hole goes a trach tube.  This creates a new passage for him to breathe through.  There is space around the trach tube within his trachea so he can breathe through his mouth and nose as well.

The trach tube is held in place by a velcro strap around his neck.  The white thing around the tube is a piece of gauze that serves to prevent skin irritation and absorb yucky stuff. 

Some people are able to use trachs without ventilators.  Nate can breathe without the vent for 5-10 minutes at a time but is generally vented 24/7.  The vent's job is to force air into his lungs to inflate them.  Nate is allowed to initiate his own breaths and the vent will make sure he takes in enough air with each breath.  If Nate is not initiating his own breaths, the vent will do it for him.  We can also use the vent to give him oxygen, which thankfully we haven't had to do in a very long time.

snazzy machine

The grey machine and water chamber is the humidifier.

One important part of having a trach is keeping the air you breathe humidified, since it is not done naturally through the nose and mouth.  When we're at home, Nate uses a humidifier that attaches to his vent.  When we're out and about, he uses an HME, or heat-moisture exchanger, which attaches to his vent circuit and does the same job. 

The little blue part attached to his vent circuit is the HME.

So now you're in the know.  Feel free to ask questions if I missed something.

Sunglasses

Traditionally Nate has hated wearing sunglasses.  For a kid who takes personal offense anytime the sun dares to shine in his direction, it's kind of weird.  But until last week, he would rather just close his eyes and scowl at the sun than wear sunglasses. 

Something magical happened while Grandma was watching him while we were on our vacation.  Well, maybe not so much magical as logical but Nate is only two so I don't give him much credit in the logic department.  She brought him out on a walk, waited until his face was in full sun, and then put his sunglasses on so he could see exactly what they were capable of.  Ta-da! 

Now he wants to wear them inside, too.

Sicky-Sicko

Whenever I used to stay home sick from school as a kid, my dad would call me a "sicky-sicko".  He always said it in a way that made me feel like he thought I was faking (which is totally possible since my mom let us lay on the couch all day watching Saved By The Bell reruns while she brought us every meal on a tv tray).

Well, we're now on Day 5 of Nate being a sicky-sicko, and I don't think it's possible to fake this kind of misery.  The first couple of days he had a fever and kept throwing up.  He just sat around like a zombie, asking for hugs and nose wipes.  His fever broke on Day 3 and he's cheered up a lot, but none of us are getting much sleep.

He hardly said a word the first two days, but every once in awhile he would grimmace and say, "Sick!".

Late night showing of Blue's Clues/breathing treatment

Nate getting sick is particularly miserable since he can't cough or control his own mucous, so it needs to be suctioned out constantly.  He's usually really cooperative about suctioning but when it gets to be 10-15 times an hour, he's not as keen on it.  We also have to worry about his trach getting clogged and him not being able to breath.  So we play a constant game of trying to thin out his mucous and then suction it out.  It's as fun/gross as it sounds.  Every time he gets sick I feel validated about the extreme measures we take to keep him healthy.

Hoping for a better day tomorrow!

Q & A Part 2

Q: Do you wish you could have more "you time"?

A: 100% yes.  Don't all parents?


Q: Has Nate's condition been a stress in your family or do you think you've grown closer because of it?

A: Both.  There is definitely a lot of stress that comes from the worry and day to day exhaustion but Annie and I have grown closer and more loyal in a way that probably would not have otherwise been possible this early in our marriage.


Q: What are your hopes for the future with Nate?

A: We hope for the same things we hoped for before he got sick.  College, friends, world-crushing good looks. Specifically, we see progress and are still hopeful that he will continue to increase in physical abilities.   We hope to see him needing the vent less and less and moving his legs more and more.



Q: Have you found your health to decline with the stress of Nate's journey so far?

A: Is tiredness a sickness?  I have that.


Q: Do you ever feel like you just need a vacation from all this?

A: Every single day.  Sometimes multiple times a day. 


Q: Why/how is he so stinking cute???!!

A: His cuteness is a gift from God so we don't completely lose it when things get really hard.  Oh, and we had him undergo some radical infant plastic surgery.  Thank you Dr 90210!


Q: What is Nate's activity level during the day. What is he able to do? What keeps Nate entertained?

A: Nate likes the same things that other little boys his age do.  He just needs more help playing and doing things than other kids.  Some of his favorite things are reading, playing with cars, and riding his bike.

He probably sleeps a little more than other kids his age.  He can't move far on his own so often requires frequent immediate attention to help him get to the things he wants.


Q: What's the hardest part of it all?

A: The hardest part is the complete mental, physical, and emotional exhaustion that comes from there being so many hard parts. It's just a lot of hard parts to put all in one blender...we've gone through several blenders.

The best part is that we still have this guy!

Photobooth

Crook Now!

Nate is old enough to be forming some strong opinions about what he likes and doesn't like. And what Nate has decided he likes now is superheroes!

He has a little board book called Catch That Crook. This is where he learned about superheroes. It has little kid versions of Iron Man (I-Mah), Spiderman (Spy-Mah), Captain America (Cap) and Hawkeye (Hot Dog) who go around catching bad guys for doing things like messing up library books. I guess the good versus evil thing really resonates with him because he is OBSESSED with this book. He calls it "Crook" and all day long we hear, "Crook now! Crook now!"

Iron Man

 

flying

he makes a good pillow

Spiderman toothbrush, great toy until we actually try to brush his teeth with it

Here is Nate telling us about all his friends.

Sweatin' For Sammy

Yesterday Nate's cousin Sammy had her annual Sweatin' For Sammy fundraiser.  Sammy has a genetic condition called microcephaly (between Sammy's microcephaly, Nate's SMARD, and my red hair we have clearly hit the genetic jackpot).  Sammy inspires me to push Nate beyond what anyone thinks he will be capable of.  She is awesome!

Sammy and her mom, Jenny

I think Nate had a pretty good time at the event.  He was quiet and overwhelmed most of the time, but then spent the entire rest of the day talking about it.  His personal highlight was definitely seeing the firetruck that came for the kids to check out.

He even got to sit inside!

I accidentally had my camera on video mode so you get some motion pictures here.

We also fed the ducks some of the runners' bagels. Yes, feeding the ducks is against park rules but if you had seen the joy on this kid's face you would have done it too. 

Can't wait for next year!