Thursday, April 12, 2012


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
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!


  1. Happy Hospitalversary! Just in this very small snippet of your past year, it's amazing to me to think of the strength it has taken all three of you to get to the point you are now. Annie, you made one really, really cute little boy.

  2. My heart goes out to you and your sweet little family. Our prayers are always with "little Nate", as the kids call him. He is such a precious boy. It's so hard to see your own child have to endure through tough trials, and through reading your blog, you have reminded us of the strength God gives us to to be able to do so. Hang in there! Love, Deb and family

  3. Man, I am so glad it's not April 12, 2011!!

  4. That was the longest and saddest four months of my life! But I also remember his crush on Sophie (and his shameless flirting); how happy he was the first time he got to leave his room and ride around the pedi floor; his mooching my fruit shake whenever I arrived to stay with him; and best of all, how happy he was when we went out the front door of the hospital and he realized that he wasn't going back in again! I will forever be grateful for that hospital for holding Nate together all those weeks and months.

  5. Annie,
    I'm so glad to have found your blog. It's super cute. What a cute little Nate. I love all your pictures too! My Nephew Blake Smith was just diagnosis with SMARD. I left a MSG on Presley Gleason's blog. Well Grandma Anita found me and sent me a really nice e-mail with a link to Nate's blog. So nice. It's so wonderful to find other families dealing with this same diagnosis. I have done a lot of research and from what I have found there are not a lot of information about SMARD. Blake has a blog it is still under construction but here is the URL We are so happy to have found you. I am sending this info to my Brother and Sister (Blake's parent's) Thanks Grandma Anita! I'm going to add you to Blake's blog if that is okay? Hugs from one family to another.