Ethan's In The House!

Hi Everyone,

It's official, ETHAN IS HOME!!! It's taken us 9 months 13 days to finally get our family all in one place, but as of about 3:30 pm on Tuesday May 10th Ethan's journey home has come to an end. We couldn't be happier to have our baby back with us. He left Franciscan's Hospital for Children at 16 lbs and off the ventilator. We had many issues with the hospital over the month he was there, but we have to give them some credit in that they did what they said they would do for him.

Traveling with Ethan isn't easy. Due to his heart defect he's still requiring constant oxygen, and needs to travel with a tank to supply that need. As long as he has the trach tube in, we must keep the suction bag (about the size of a car battery) with him, along with an Ambo bag, and the spare trach. These need to be around in the event his trach comes out unexpectedly. He's usually hooked up to an oximeter as well, which measures his oxygen saturation and heart rate. We've been working day and night trying to get the house in order to make things easier. My week off of work went way too quickly, and we are still scrambling to get things together.

Things haven't all been roses since he's been home so far. We've been working with Maxim Nursing to supply the day and night nursing support we need with Ethan. Overall, they've been great, but within the first 3 days we had to fire one of his nurses. In the end, it just wasn't a good fit. I have to admit it's a bit unnerving to have someone you don't know in your house while you try to sleep, and take care of your baby boy. Our other big event home so far happened on Saturday. The night nurse took Ethan's temperature in the early morning, and he had a fever of 101.5. We took him to his pediatrician at 9:30am Saturday morning, and the doctor on call was in a bit over his head. He recommended we take Ethan back down to the ER in Boston. A bit panicked, we packed up the Sienna and make the now dreaded trip back South again. After a chest x-ray, and blood work they couldn't find any issues with Ethan and make the assumption he had a virus of some sort. It was such a relief to find that out, and that he didn't have to stay there overnight for observation.

His fever broke Sunday afternoon, and we finally got a glimpse of the Ethan we were used to dealing with. Kevin has had some trouble transitioning to his brother being home. He's been moved down the bench, so to speak, in that Ethan's needs tend to be a bit more urgent than Kevin most times. He has been working on his revenge though. Kevin's learned that Ethan can not stand the sound of his squealing. Consequently, that's become Kevin's absolute favorite thing to do. It's kind of pitiful to hear the scream, and then look at Ethan turn bright red, his bottom lip quivers, and he starts silently balling.

We've been staying very busy. The weekend before Ethan came home, our friend Megan Rettig came to visit. This upcoming weekend Blake and Betsie are flying in from Indiana. I'm excited to be going to my first Red Sox game Friday night against the Cubs. Tina volunteered to stay back with the boys that night, so I owe her big time for this one. She's been awesome at handling the boys and me! During our episode with the ER on Saturday, she took control of the situation, and got the job done when it would have been so easy to panic. I love her so much, and am so grateful she's by my side during this tough time for us.

I say it every blog, but I truly want you all to know how grateful we are for you all. You kind words, emails, text, etc. keep us going when we are feeling overwhelmed by our situation. God bless you all, and we hope to see you soon.

Love to all,

Ryan, Tina, Ethan and Kevin

Ps. Just a quick update on Ethan's medical situation. He still has a small leak (VSD) in his heart, and his pulmonary stenosis has worsened some. The plan is within the year for them to go in through a catheter and repair both of these. Hopefully this will remove his oxygen dependency. Also, we are hopefully they will be ready to remove his trach this summer. ORL will continue to monitor his diverticulum and see how's it's healing. Worst case he'd have to keep it until next summer.