More on Cincinnati and Update

King Sean and Prince Sam

Before Sam’s surgery, we had some fun at the Cincinnati Zoo again. Sean was nervous about Sam and being around all the people, but it was nice to be able to do something “normal” with Sam since we had to have him in a bubble the month prior. Doing normal things with Sam always tugs on my mamma heart. Sam was more interested in trying to pull leaves off trees, and snatching my sunglasses off my face to throw in the ostrich cages. And, of course, his nose (filter for his trach) went flying too. So, if you go to the Cincinnati Zoo anytime soon and see the ostriches wearing sunglasses…

Our hotel didn’t have a bathtub so we had to improvise. Sam thought taking a bath in the kitchen sink was great. It was a lot less stressful for Sean and I too, because Sam LOVES the water. If he was able, I think he would have his head under the water all the time. He has no idea what would happed if he completely submerged himself in water. He is very brave around water and is constantly trying to put in head under, which makes bath time and water in general, pretty stressful for us. My heart skips a beat when I think of Sam without a trach and the day he can completely submerge himself in water. I think he will be a fish. Oh happy day.

When we knew we had to cancel our flight home because Sam was misbehaving, I instantly started looking for one way flights. It was not looking good.

We found out on a Wednesday evening, Sam would be discharged the next morning. The soonest flight out I could find was on Friday morning at $835 a piece! Not happening. The flights for the following week weren’t much better and we did not want to be stuck in Cincinnati any longer. Will and Abby were perfectly fine at home with my niece holding down the fort. I think they would have been happy if we were gone longer.

We decided to keep the rental car and drive home. We quickly packed Sean’s things at Ronald McDonald House (RMH) after Sam discharged, but couldn’t pass up the free toy from RMH for Sam. Of all the toys, he picked the doctor set.

Sean and I had to play a little Tetris to make everything fit in the SUV, but we did it. We were definitely homesick.

Sam does not travel lightly. And there were still six boxes waiting at the hotel for him!

Two days later, we made it home. Sam did surprisingly well with two full days of driving in a car. Sean and I were exhausted and very happy to be home. Sam was happy to see his siblings.

It has been almost six weeks since Sam’s surgery. We wait one more week to find out if the surgery worked or not. When I asked the doctor in Cincinnati if he thought it was a zero percent chance the surgery worked because of what happened, his response was, “The only person who knows that, is not in the room right now. We just have to wait and see.” Hmmmmm. Faith over fear, Jamie.

Sam’s ENT trained under the ENT who did the surgery in Cincinnati. Thankfully, we don’t have to travel back to Cincinnati for Sam’s bronchoscopy to get the news. Our expectations are low and our hopes are high for the news. It’s yet another sedation for Sam. Prayers everything goes smoothly next Friday.

Like my friend said, ”I figure no news is good news.” Yes, since we’ve been home, Sam has been doing great. We’re still moving slowly on his feedings, but he started at twenty-four hours a day six weeks ago, and is now down to eleven hours a day! And barely any retching! Progress!

He has had zero signs of intussusception. We’ve all questioned if the intussusception was happening longer than we think. It’s a hard thing to catch because they can only see it on ultrasound or x-ray when it’s happening. It’s likely the other feeding tube (j-tube) is what was causing it, which then makes its less likely to happen again. Continued prayers Sam will not get intussusception again.

And BIG Happy Birthday to my sweet boy today!!!!! We’ve kept you alive for six years now! Everyday we get with you is a blessing we didn’t think we would get from day one. I’m incredibly thankful we live where we do, knowing in many other places, you would not have made it past the first day. Keep doing what you do best, by making other hearts a little bigger.

Faith Over Fear!

Sam Strong!