One Week!

Good evening everyone,

I'm coming to you live tonight from Unit 3 of the Franciscan's Hospital for Children in Brighton, MA. Ethan and I are having our first sleep over, with me staying with him at the hospital. They require that both Tina and I take 24 hours of full time care under the hospital supervision, so we have a better understanding of what we are in for when he comes home. Ethan is such a good baby, he's relatively easy to take care of (which I never thought I'd say about trach care). I administered his meds, cleaned and changed the G-tube dressing, and cleaned and changed out the trach ties. The not-so-little guy is a sweaty boy, between the heart condition and the trach, and needs his ties changed twice a day.

Maybe I'm speaking prematurely, as it's only 10:11pm. However, caring for Ethan isn't as daunting a task as it first seemed months ago. Thankfully, he's made enough progress that we don't need to worry about a ventilator. He's only getting 3 meds, one of which is a multivitamin. I keep praying that we will be able to get the trach out this summer, because then we might finally have the most difficult issues behind us. The G-tube will probably remain for a while, at least until he's figured out oral feeds well enough to gain weight from them. The G-tube is extremely easy to care for, and makes administering meds a breeze.

We've been working around the clock to get the house ready for his arrival. The sad thing is, we had to move Kevin's crib out of the nursery and into our room. When Ethan comes home we will have help via home care nursing who will stay up with him at night. The positive side is it will allow us a chance to actually sleep. On the flip side, we now have Kevin in our room. He likes to talk in his sleep.

Kristen's back from AZ for Leanne and Nate's wedding. We missed not being there for the wedding (CONGRATULATIONS YOU GUYS!), and we missed having our amazing helper basement creature around as well. While she was gone, it was litterally the first time Tina and I had been alone since before the boys were born. It was very nice to spend some time with my lovely wife, but it also made logistics for us extremely diffcult. It's strange to think that with all of the traveling we do now, starting next Tuesday we will effectively become hermits until Ethan is OK to travel.

Hopefully we'll have the opportunity to explore this great state we will in now, and we tentatively plan on making a road trip back to Ohio in August, that is if Mr. Ethan cooperates. I'm taking next week off of work to help the transition home go as smoothly as possible. So much to get done in such a short time. Not that I'm complaining. I'd get it all done tonight if that meant he came home tomorrow.

We've spent the last 9 months and 6 days in a nightmarish Groundhog Day. Where we've spent more time in the car traveling to and from the hosptial, then with Ethan. Where Kevin doesn't yet know what a "normal" routine is, because we ask so much of him at such a young age. I think the smell of the hospital disinfectant is permanently stuck in my nose, and the alarms that are designed to alert have become nothing more then white noise on the floor. Tina and I are so ready to finally have this chapter in our lives behind us. Right now, it still doesn't seem real. We are ready to move on with our family, and show the boys all about this world.

I cannot thank you all enough for all of the support, prayers, and friendship you've shown our family. We are truly grately to you all, and appreciate all the love we've received. Please keep Ethan in your prayers, that he might get the trach out this summer. I'm so excited to post the first picture of him FINALLY coming home.

Much love to all,

Ryan, Tina, Ethan, and Kevin