Monday, April 30, 2012

The Dreaded Sleep Study

Nate had his first official sleep study last night.  The doctors wanted to get a baseline of how he's doing by turning him into a robot.  It took an hour and a half and a lot of frantic sobbing and yelling for "home" to get him to look like this:


9 leads on the head, 7 on the face, 4 on the legs, 5 on the chest, 1 on the toe. 

As soon as we pulled up to the clinic he was begging for home.  When we got inside he kept saying, "Go in car!  Go home!  In car!"  Scott said, "We can't go in the car."  Nate paused and then replied, "Bike!"  Those little wheels were turning to find us an alternate mode of transportation home.

He did eventually settle down and fall asleep around 11.   George kept him company all night long.


Surprisingly he seemed to sleep better than I did on the pull-out chair next to him. Today we are both so tired we can barely sit up.

The goop left in his hair is not going anywhere soon. 

Only six more months til the next one!

Saturday, April 28, 2012

Nate's buddies

Getting out of the house is a lot of work for us.  Every time we leave, we have to carry Nate (26 lbs), his ventilator (14 lbs), suction machine (7 lbs), an emergency bag (1.5 lbs), a regular diaper bag (1.5 lbs), and usually an oxygen tank (5 lbs).  That is a grand total of 55 pounds.  When I take him on short bike rides around the neighborhood, I leave a couple of those things behind, but generally I feel like a pack mule anytime we go anywhere.  I almost always have to have another person with me to get him out.  Did I mention we live on the second floor of our apartment building with no elevator?

So we looooove it when people come to visit us!  

Cousin Milo.  You can't tell in this picture I think Milo likes Nate, too.


Cousin Tommy.  They share a love of all things Thomas the Tank Engine.
Hailey!  She comes to play with Nate nearly every week and he thinks she is the bee's knees.
Holland, or "Holla-kid" as she is known around here.  I think Nate has a little crush on her because he always gets really shy when she comes over.
Nate has a lot of other cousins and friends, but these are just the ones I happen to have pictures of.  So don't feel bad if you come over and you're not featured here.  And if you don't come over, you should. 

Wednesday, April 25, 2012

Q and Eventually A

I have realized since Nate got sick that people have a lot of questions that they don't always feel like they can ask.  It's true that I'm generally quite a private person but I feel like it's important that people know about Nate so I'm actually very happy to answer questions.  But, I never know what people are wondering about until they ask.  So I'm opening it up to you to ask me whatever you want about Nate, his condition, our lives, family, etc.  Ask me anything!  Comments on this blog can be anonymous if you so choose.

I'll try to answer your questions in upcoming blog posts.  Now lay it on me.

Sunday, April 22, 2012

Equation for awesomeness


-


=





Kind of reminds me of





I'm going to miss the bedhead.  But not combing it out.



This was probably Nate's 36th haircut, but it was the first done by someone other than me.  He found it rather traumatic.  We tried to make up for it with a bike ride at Shoreline.


Goooooooooooo!

Thursday, April 19, 2012

Back on Bike

Nate's bike is just about the best thing that's ever happened to him.  When he sees it in the morning, he always says, "Hi, Bike!" like it's his long lost best friend.  That is always immediately followed by a combination of "on bike!" "back on!" "ride bike!" "my bike!" and "back on bike!" over and over again until he's on it.  When we can't actually get out and ride it, he still wants to just sit on it in the house.
laundry day
Today's ride was particularly great.  The sun was out and it was a little breezy and Nate had seen at least ten mailboxes and two fire hydrants.  Then all of a sudden he started saying, "Haaaaappy!  Happy!  Happy!" and then he flung his arms out like he was King of the World.  I said, "Nate, are you happy?" and he said, "Yeah!!!!!"  A little while later he told me he was happy again and then did his hot dog dance.  
Any mention of the word "home" while we are on a bike ride illicits aggressive sign language for "more" and shouting "more bike! more more more!!!"  It's hard to say no to this kid.

Monday, April 16, 2012

Sunday, April 15, 2012

Nate's Imaginary Sibling

A lot of people have asked us about if we're going to have more children.  The answer is a) where are your manners and b) we hope so but don't know if we'll be able to.  When we first got Nate's diagnosis we met with a genetic counselor who walked us through our options for possible future children.  They are:

1) Roll the dice and get pregnant the old-fashioned way.  There is a 25% chance any future kid will have SMARD.  The fetus can be tested for SMARD through an amniocentesis or chorionic villus sampling.  There is the option to terminate the pregnancy depending on the result.
2) Preimplantation Genetic Diagnosis (PGD).  This is similar to in vitro fertilization but the embryo is tested for the disease before it is implanted. 
3) Sperm or egg donor
4) Adoption
Obviously there are lots of pros and cons for each and what's right for one family may not be right for another.  But it is amazing to live in a day where these options exist.  We hope that someday we may be in a position to give Nate the little sibling he never knew he always wanted. 

Thursday, April 12, 2012

Hospitalversary

A year ago today, Nate was at the mall having a birthday lunch for Grandpa Green.  He'd had a cold for a couple of days and seemed pretty tired.  We had just left the restaurant when he started to labor so hard for breath he turned blue.  The ambulance came and our adventure began.
just a few days earlier
one of the last pictures we have of Nate standing
he had the funniest little walk
look mom, no tubes
We were initially admitted to the PICU but after a little nap he seemed to be doing a lot better and they sent us down to the regular children's ward.
Before too long his oxygen was dropping again and he got sent back to PICU.  Over the next couple of days he just kept getting worse and worse. 
just stabilized after a big scare
bi-pap
After a couple of days on bi-pap it became clear he needed to be intubated.  He was intubated for three weeks and had two surgeries during that time.  When he was finally extubated, it lasted less than 24 hours and they had to reintubate for another couple of weeks.  While he was intubated, he had to be in an induced coma.  He was on heavy doses of Ativan, Fentanyl, and Versed.  The longer he was intubated, the more drugs he needed to stay asleep.  The 16-year-old boy next door was on a lower dose of these meds than Nate was. 
We missed our little Nate a lot during that month.  We couldn't hold him at all while he was intubated.    
Finally we were able to successfully extubate and we began the process of weaning him off his drugs.  He would have terrible withdrawal fits.  Giant pupils, sweating, and uncontrollable shaking.  He still wasn't off his drugs by the time he was discharged and we had to give him Methadone and Ativan at home.
We were so happy when we finally got to bring him home on oxygen during the day and bi-pap at night.  But it still didn't feel like we had Nate back.  He was happy sometimes but fussy a lot, and he was still withdrawing from his drugs and just wasn't healthy.
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.  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).  
The following morning he got his trach.  It felt so good to see him breathe with such comfort and when he woke up after the surgery, and he seemed like the happy little boy we remembered from months earlier.
Unfortunately the hospital saga doesn't end there.  We were discharged a month later and then readmitted twice after some horrible incidents.  This story is getting really long so I will spare you the rest of the details but let's just say that hospitals are horrible places and we won't be forgetting April 12th anytime soon.  We're so happy we made it through the year and we still have our awesome little Nate!

Sunday, April 8, 2012

2nd 2nd Birthday (not a typo)

Nate had the greatest surprise waiting for him at Grammy and Grandpa's house today!


Once he got strapped in, he wanted to get moving!


 He tried really hard to reach the pedals.


Since Nate isn't mobile, he really loves any chance he can get to be on the move.  This week we're going to rig the back bucket so it can hold his vent and then we can really go to town.


The whole thing made him so haaaaaappy.

Saturday, April 7, 2012

Easter Saturday

Last Easter, Nate was lying in a hospital bed in a coma.  This year was only slightly better since Nate decided to wake up at 4am and not go back to sleep.  We dyed eggs as soon as Mommy could bear to get out of bed.   And in case you were wondering, I do know he needs a haircut. 
Thumbs up!

He was really into dying the eggs and taking them in and out of the carton once we were done.

Nate got to try out his new-to-us wagon at Grandma's in the afternoon.  It was a hit!
Tommy wanted to join.

And soon everyone wanted a piece of the action.


Then there was an egg hunt and some special candy-less eggs, just for Nate. 


He was also nice enough to pick out some of the good eggs for Mommy and Daddy.  Everyone's happy--I have jellybeans, and Nate has some new cars and stickers.


We love Easter and are grateful for the Gospel that helps us do hard things.


Tuesday, April 3, 2012

Birthday Report

Nate had a very happy birthday. This is Nate being "happy". When I take a picture now and tell him to smile and be happy, he says "haaaappy" and then the picture looks like this:



We spent most of the day at my parents' house with cousins and aunts and uncles. Nate played marbles and colored at the craft table with Greta and Tommy.




I made Nate a kite cake with birds and trees since he's really into kites and birds and trees.



He's also deathly afraid of open flames so I thought rather than torture him with a candle, he could blow the kites like the wind. He didn't want to blow the kites but he did want to grab them off the cake and play with them.



He got lots of great presents but opening them was a bit of a chore. Nate is really obsessed with opening and closing things, over and over again, and if something gets opened he then wants to have it closed. So after we opened a present he wanted to close it again. Don't worry he's not an idiot, just a little OCD.



The last couple of days have been a breeze for me since he has so many new toys to play with. Next week he gets Party Numero Dos at Grammy and Grandpa Green's. He's pretty 'cited. Lately he's been throwing his arms up and saying "cited!!" like so:



This birthday was really important to Scott and me because there were a lot of times during the last year when we weren't sure if Nate was going to have a 2nd birthday. We are so happy he's still around.