Saturday, October 31, 2009

Happy Halloween!!

Aidan has been a little under the weather today (and so have mommy and daddy), so we've decided to stay in and pass out candy instead of trick or treating. But he still looks so cute in his halloween pajamas!! Happy Halloween everyone - hope you all get lots of good treats!!

Friday, October 30, 2009

Pumpkin Time

Kip and I took Aidan to Huber's Farm this week and picked some pumpkins. Not just any pumpkins - we got a 30lb and a 40lb pumpkin!! We left one for Fall decorations and Kip carved (or drilled - isn't everything better with power tools?) into a Spongebob!! Oh I can't wait to see the look on Aidan's face when he sees it tonight in the dark!!

Didn't he do a great job??

Tuesday, October 27, 2009

Mixed emotions.

I am so super excited to tell you all that I got a call today from the Rett clinic, the international Rett Syndrome Foundation (IRSF), just received a million dollar match gift!! AND they asked if we would be willing to do an interview with the media regarding our special little man!! OH, I can't tell you how excited I am!! If you would like more info on the gift, please go to the website listed below: irsf-ir1102309.php

However, two of my dear friends have received some bad news this week. One's grandma fell and had hip surgery on Sunday. She is doing well and starting rehab today. The other friend's grandma had a stroke last week and is not doing very well. Please pray for my friends and their families!!

Friday, October 16, 2009

How things change in a matter or minutes

I had to make my first 911 call yesterday morning. Aidan's trach came out (while still attached to his trach ties), and his nurse and I were unable to get it back in. Aidan was turning a little blue, however with a little help he was able to breathe on his own some. We were rushed to Kosair, with the mindset that he would go to surgery to get it replaced. (I won't tell you many times I almost called 911, from the ambulance, on the way in because NO ONE seemed to care that a rushing ambulance with lights and sirens blaring, was coming down the highway!!)

Luckily, his surgeon was the one on call today (oh, how we LOVE Dr. Downard!!), and she was able to replace the trach without going to the OR. Aidan has been fighting what we think might be a cold or flu bug for the last 24 hours and he had a slight fever, so we decided to stay in the ER for a little while to see how things went.

Aidan's fever was coming down, however he still required some oxygen, so we were going to be sent home via ambulance. While waiting for our ride home, Aidan's oxygen stats started to fall and we were awarded the golden "welcome to the PICU" pass for the night. We were soooo hoping to go home and not have to stay longer to get any germs. But, so is life.

We are hopeful, that we will get sent home today. Tests are still out, and will take a couple days, to see if he has a bug or not. But the doctors are being proactive and treating him with meds.

Thursday, October 1, 2009

What we've learned in a week...

We've been home a week now - and MAN does it feel good!! We're definitely learning a lot this week, and I'm sure we'll have even more lessons under our belts in another week!!

*Aidan is a fast healer!! His trach site look GREAT!

*Night nursing is a blessing!! It really wasn't as bad or invasive as we thought it would be.

*Aidan is still (and understandably) scared of nurses, even at home!!

*We aren't suctioning as much as we thought.

*But we're still suctioning a lot!!

*Getting a routine down is still not very easy in this house!!

*We CAN still go out with a trach.

*We have a LOT of extra baggage when we go out!!

*As long as we take things day by day, hour by hour or minute by minute, we'll be ok!!

*Aidan is cuter than EVER!!