Thursday, May 31, 2012

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.

Monday, May 28, 2012

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.


Sunday, May 27, 2012

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!

Friday, May 25, 2012

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!


Tuesday, May 22, 2012

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.




Sunday, May 20, 2012

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!

Thursday, May 17, 2012

Witty Conversationalist

Much like his parents, Nate has been blessed with the gift of conversation. He is stringing together more words and thoughts all the time and it's so fun to hear what goes on in his funny little head. Some popular topics of conversation lately: what he saw on his bike ride that day, wanting to go see Mitt Romney in the car (I really have no idea where he got that idea), superheroes, people he knows, Cat in the Hat, and the texture of our ceiling. Here is one of our recent chats:




Last year there were about five months were we didn't hear his little voice at all.  It took a long time for his voice to come back after he got his trach and we were getting worried that it wouldn't come back at all.  Nate's constant blabbing has always been a big part of his personality so we were so happy when he finally started talking again.  His voice and his vocabulary are getting stronger all the time and we love it!

Tuesday, May 15, 2012

Q & A Part 1

Q: Does your insurance pay for things like Nate's hospital stays, breathing stuff he needs to lug around, tests, etc?

A: We are extremely lucky to be California residents because most of Nate's medical care is paid for by California Children's Services (CCS), which is a government program that helps special needs kids.  Insurance pays for a lot too.  He's an expensive kid.


Q: How much sleep do you get a night?

A: When Nate is healthy, I can get 7 hours.  Scott and I both get up once a night to do some maintenance stuff.  Often it's more than that.  Some nights we hardly sleep at all.  But at minimum, I set an alarm for 1:00am, do my chores, and go right back to sleep.  Scott is used to having to get up.  I find it painful every single time.


Q: Do you have hobbies you like to do that you actually get to do?

A:  Sort of.  It's more a matter of energy than time.  By the time Nate gets to bed and all the must-dos are taken care of, I'm often so wiped out I can't even think of taking on a project.  But when I do have the energy, I still really love to sew, embroider, craft, and dream up ways to make our apartment a little cheerier.


Q: Do you like visitors who aren't family to visit? Or are visitors stressful?

A: I do like it most of the time.  I'm happy anytime Nate gets a chance to socialize, since we're usually pretty isolated.  We have a lot of appointments but I try to make time for at least one (healthy) friend or cousin to come over every week.


Q: If you or Scott are sick, what do you do differently with Nate?

A: Let him watch a lot of tv and call Grandma to beg for mercy/babysitting.

I spy an airplane!

Saturday, May 12, 2012

Mother's Day

I've hijacked the regularly programmed post Annie wrote.  We're going to mix it up a bit today.

Annie is amazing.  I thought of different ways to begin this blog post but found the blatant truth the most appropriate.  I've thought about how to express how hard it is to be the mom that Annie is and how good she is at being that mom.  Our life is difficult and Annie is faced everyday, all day with the brunt of that fact.  Inspite of this, the number of people that have heard her complain is the same as the number of people who know where Hoffa is buried.  She is a mother of the purest quality and Nate desperately needs her.  Taking care of Nate is exhausting and trying.  He needs constant attention, extra teaching and a patience beyond my reserve.  Nate brings us immense joy.  He is a sweet boy who has great needs and Annie meets them unwaveringly. 

There have been times of relentless exhaustion.  After a long night or a bad nap, I've seen Annie go from exhausted and frustrated to pure love and joy as soon as she sees Nate's face.  Her love for Nate as his mother is boundless.  It would be easy to describe the extreme difficulty of taking care of a SMARD child but while that shows true dedication and endurance as a parent I think Annie's true excellence and dedication as a mother is best shown by her happy love for her son.

There are so many things I could say about Annie.  She is creative, intelligent, hard-working, funny, patient, if she were a president she would be Baberham Lincoln and so much more.

But most importantly, she is Nate's hero and rock.  Nate will always look back at the incomparable love and support of his mother.  Nate's strength in life WILL be a result of the strength and love of his mother.  Nate will never know how hard it is being his mother because despite the frustration and exhaustion, the face he will always see on his mother will be a smiling one.

 

Friday, May 11, 2012

Victory!

Scott and I just got back from a whole 24 hours away from Nate!  And we all survived!  And, based on his reaction when we got home, he didn't miss us at all! 

People always call kids like Nate "special needs" but I think that's a gross understatement.  A kid with a food allergy has a "special" need.  Nate's needs are indeed "special" but they are also "more".  Unfortunately you just can't call him a "more needs" kid.  It just doesn't sound as good.

Anyway, I point this out because it is hard work to take care of Nate day to day.  And for someone who has never done it for more than a few hours before, it's scary!  So we really owe my mom for taking such good care of him while we were away.  Even with all her experience, our training sessions, and six pages of notes on how to do everything, we still had to talk a few times to go over things and make sure everything went okay.  And it did.  Hooray!

From our hotel balcony.  We were right on the water and it was fab.

So nautical right now.

Sorry Nate, but I didn't miss you that much either. 


Wednesday, May 9, 2012

Thursday, May 3, 2012

G-Tube

Nate can't and/or doesn't want to eat with his mouth.  No, not even ice cream (That is always the first thing people ask when I tell them Nate doesn't eat.  Tastiness of the food is not a factor).  His aversion to food is most likely a product of 1) having very low muscle tone in his facial muscles, making it difficult to chew and swallow 2) having some sensory-processing issues related to his condition, and 3) being in the hospital for four months last year, not eating at all during that time, and being intubated for much of it.  That kind of "oral trauma" as they call it nearly always makes a kid not want to eat.  Also, after you don't eat at all for such a long stretch, it's not instinct anymore.  If we ever do manage to get a cracker in Nate's mouth, he doesn't know what to do with it. 

Nate is safe to eat and does drink water from a bottle when he feels like it.  But he knows right away if you even try to sneak a little juice into his water, and he won't touch anything he suspects might be food.  So, all of his nutrition goes through his g-tube.  This is a tube that was surgically placed directly into his stomach.  
Not actual Nate
Liquids can either be given with an automatic pump or manually with a large syringe.  I like to use the automatic pump because all you have to do is plug it in and let the machine do the work.  And look at all the fun Nate can have while he is being fed!

In the beginning, we were extremely paranoid about the g-tube coming out because we didn't know how to put it back in again.  It was also blistering hot in our apartment.  Hence, the ace bandage!




Nate's diet consists of every healthy, whole, organic food you can think of, mixed all together in a Vitamix.  It looks and smells really good.

I would love for Nate to learn to eat eventually but he has made it clear that he's on his own timetable, and that's okay.  We have made some minor progress from seeing a feeding therapist.  For now I am satisfied that we have a way to feed him and he is getting excellent nutrition.  Seriously, I wish I had Nate's diet.