Tuesday, July 31, 2012

Smarty Smardy

Nate is a pretty smart kid but he doesn't get much credit for it.  Maybe people just can't see past the all the tubes and crazy hair, I don't know.  But it's high time we did something about it.

Does that help?

Scott has a really terrible eye infection and can't wear his contacts for the next few weeks.  Nate thinks this is awesome since his glasses have now made an appearance and he's allowed to wear them for a few minutes a day.  We put them on and he pretends to be daddy.  We all get a pretty big kick out of it.

Friday, July 27, 2012

Number One

Nate is #1 and everyone should know it.  So we branded his leg.  Doesn't it look awesome?

Okay, maybe he was just sitting on a magnet for too long, but he picked the right number.

Incidentally Nate is really into numbers right now.  He loves to count and point out numbers when he sees them.  The other day when pulled up to my parents' house he saw their address and said "567!" (Yes that really is their address, please don't stalk them now).  Funny boy.

Sunday, July 22, 2012

Days Without Incident

When Nate first came home from the hospital last August, he wasn't in great shape.  His oxygen would drop dangerously low on a regular basis and it was up to me and Scott to revive our blue little boy.  A few times we had to call the paramedics and ended up back in the hospital, but most of the time we were able to stabilize him at home by suctioning, changing his trach, and/or using a manual resuscitation bag.  Those days were filled with constant anxiety.  We considered it a feat to make it even a few days with an incident. 

That's when we started a "Days Without Incident" counter on our chalkboard.  We considered an "incident" anytime he had a significant loss of oxygen and had to be resuscitated.  There was a lot of going back to "0" on that counter.  Gradually these incidents got less and less frequent and we stopped counting altogether.  I think it's been well over 300 days now.

Nate is so much healthier now, and we are so much better at taking care of him so it's easier to prevent scary situations.  These days we consider it to be an incident when he poops all over his sheets or his feeding tube comes disconnected and he's sitting in a pool of his own stomach contents all over the carpet (thank goodness we're renters).  The "Days Without Incident" counter still gets updated from time to time though.  I like to remind myself how far we've come. 

Saturday, July 21, 2012

Classic Nate

Sometimes we forget that before there was Nate, there was baby Nate.  

Once upon a time Nate was a Cheerio addict.  We often found him in a room in nothing but his diaper, crumbs all over him and an empty box of Cheerios by his side.  In fact, he may not even have SMARD, this could just be Cheerio withdrawal. 

Tuesday, July 17, 2012


Nate is a pretty happy and easygoing kid but he is not one to leap into anything unfamiliar.  I think he's earned the right to be cautious after all he's been through in his life, but I still insist that he gives new things a shot.  I've learned that if you give him an equal amount of patience and pushing, he'll come around eventually.

Swimming was not an instant hit this year.  I think we took him at least three times before he stopped throwing tantrums at the mention of the word "pool".  We started by just sunbathing beside the pool.  Then we dipped our feet in the water while Nate shouted orders to Daddy to swim like a hippo, giraffe, or a starfish (very little difference in technique, if you're wondering). 

Eventually Nate was comfortable enough (and the weather was hot enough) for him to want to get in the water.  Now swimming is his favorite thing to do and he'd go everyday if we could. 

By the way, I realized right after this that he was saying he saw a "three", not a tree.  He was pointing out the number 3 on the depth marker in the pool!  Isn't he clever?!

Some people have asked me how he can go swimming with the trach.  Basically we just have to be careful that the upper part of his tube and his neck stay dry.  Lately we've been taking more risks in exchange for better quality of life, and so far I think it's worth it.  But if you happen to run into his pulmonologist, none of this ever happened.


Monday, July 16, 2012

BYU vs SJSU Tickets Still Available

Tickets to the game are still available!  For those who were waiting for the Ticketmaster.com code, we got it today.  Now you can get your tickets online here OR you can put a call in to Kevin at 408-924-1245 to avoid convenience fees.

There are still great seats available, but the game is on track to sell out by September so don't wait to get your tickets.  If you haven't already visited our Facebook page, "like" it and share with your Bay Area friends!

*To clarify how the seating works, General Admission is on a first come-first serve basis. Meaning, there is no guaranteed seat for you if you have that ticket. We have been told that this game in particular will be very difficult to find and keep a good seat since it will be a sell-out.

Our recommendation is to get Reserved tickets ($33) so that everyone in your group can sit together and if you show up 5 minutes before kick-off, you will have a seat waiting for you.* 

Saturday, July 14, 2012


Nate often asks me if he can watch videos on the computer.  When I ask him which videos, he almost always says, "Nate".  This kid can't get enough of himself.  Should I be worried?

Monday, July 9, 2012


Nate has now had his trach for an entire year.  I can't believe it.  Actually, I can.  It's been a very long year. 

After spending last April-June in the hospital, Nate was discharged. He used a combination of an oxygen cannula and a biPAP machine that forced air into his lungs (basically what the vent does now but the air went into his nose instead of his neck).  He seemed to be doing okay at home, but he definitely wasn't himself most of the time.  He was still withdrawing from the narcotics he'd been on in the hospital and just didn't seem healthy.  (If you want to catch up on more of last year's hospital saga, read this.)

One morning, after we'd been home for a couple of weeks, Nate didn't wake up. He had needed a bit more oxygen than usual that night and I was concerned so I woke him up. Only he just wouldn't really wake up. His eyes looked dead and he seemed totally unaware of me.  I called the paramedics and then my mom showed up unexpectedly with Nate's cousin Greta.

Nate was lying on the floor and Greta, who was one year old, crouched down right next to Nate and started to poke him really hard all over his body.  She seemed very confused about why Nate was just lying there not moving and was trying to poke him back to life.  It was a horrible, stressful morning but looking back on that always makes me laugh. 

When the paramedics got there I had him on as much oxygen as I could give him and his heart rate was way, way low. He was intubated immediately in the ER and had CO2 levels of 212 (normal is 30-40).  No one could believe he'd made it.

The next morning, Nate got his trach.  I know people will think this is really weird, but Scott and I went to the mall while Nate was in the OR.  This was his third surgery and we had learned from the other two that it really doesn't do any good to sit around waiting.  The operations always take longer than they tell you they're going to and all it does is stress you out.  We just had to put our trust in the surgeon and then get out of the hospital.  I guess it was our way of dealing with some of the stress.

We got back to the hospital just before Nate came back up to his room.  It was amazing to see the change in him after the surgery.  He just looked so comfortable.  I hadn't seen him breathe that comfortably since he was a baby.  He had great color in his face and I felt like we'd made the right decision to give him the trach.

At the time, we had no idea what we were up against.  We didn't think he'd have the trach for more than a few years, and we definitely didn't think he had anything like SMARD.  Nate's trach has complicated all of our lives in countless ways, but it is also the reason he still has a life to complicate.  So I guess we'll take it. 

Sunday, July 8, 2012


Last week Nate's cousin Callie had the idea that she wanted to bring Nate into her princess tent.  She set it all up with blankets and pillows and invited/demanded Nate to come inside.  He loved playing peekaboo and going "in tent" and "out tent" over and over. 

Callie is such a sweet friend to Nate and he is always so excited when we get to go see her.  

Friday, July 6, 2012


Because of Nate's trach and overall respiratory weakness, his secretions have to be suctioned out periodically.  He can cough stuff up into the trach tube, but then it has nowhere to go.  So, we get the fun job of suctioning it out.  We use a suction machine attached to a catheter that goes right down his trach and sucks everything up.  If that sounds gross to you, it's because it is.

This has become a very normal part of all of our lives.  Nate will ask for suctions when he needs them and tell us if the suctions aren't doing their job and he needs a breathing treatment (it still makes me laugh to hear my two-year-old say "nebulizer"). 

The other day Nate's friend Holland was over and she had a little coughing fit.  Nate kept saying "suction, suction" because that is what he gets every time he coughs.  Holland's mom pretended to give her a suction but Nate wasn't fooled.  He kept pointing to the suction machine and insisting that's what she needed.  When no one went to go get it, he decided to take matters into his own hands.  He turned himself around, army crawled to the suction bag, and tried to open it up.  What a good friend.

Suctioning Mommy
Suctioning himself
This video was taken six months ago when Nate first started to pretend to suction himself and anyone else who would let him.  It's longer than it needs to be but you'll get the idea.

Wednesday, July 4, 2012

Happy 4th of July!

This morning we went to our church's annual 4th of July pancake breakfast.  This year included a "parade" for the kids led by Lady Liberty in an afro wig (you looked amazing, Karen!).  The parade started off with the best of intentions and the kids generally following the chalk arrows in the parking lot, but quickly degenerated into an every-kid-for-himself road rally with a fair share of crashes and tears.  It was fantastic.

Monday, July 2, 2012

Slide or Breaths

Now that Nate can comfortably spend a little more time off the vent, he's really been enjoying the slide.  Last weekend we took him to the playgroud where Scott took him down the slide over and over again.  After each time, we would give him the option of going down the slide again or taking some breaths from the vent.   Most of the time he picked breaths.  He'd take a few and then be ready to go again.