Well, I guess I was right to wonder how a swallow study is done on a kid who doesn’t eat or drink anything by mouth. My question lead speech, the specialty who performs a swallow study in combination with radiology, to talk with Sam’s ENT. They decided we have to do feeding therapy before they perform the swallow study. Bummer, but it’s okay.
Yesterday was not a good day in our house. Let’s just say, the cancelling of the swallow study was not the only, nor the worst, of our bad news for the day. When it rains it, it pours, BUT there will be a rainbow. And, like I have said in the past, it could be so much worse.
Again, don’t just keep Sam in your prayers. Each time you pray for our Superman Sam, pray for the hearts of me, Sean, Will, Abby, and Ryan. My kids lives have been turned upside down over the past two years, and to say all of this hasn’t affected them, would be silly. Someday, I will write about the other half of our story, but for now, I can only ask for prayers.
Thank you for continuing to follow Sam’s story. I’m so thankful to the nurse at Children’s who encouraged me, so long ago, to start a CaringBridge site. You have no idea how much therapy I get from writing and reading previous posts and comments. I find myself going back and reading things I would have never remembered had I not journaled Sam’s story. Sometimes, if I’m having a bad day, I read past comments and my heart smiles again. Thank you for your encouraging words. They go a long way and are not forgotten.
We’ve had a few good days! Thank you Lord! And thank you for the prayers. This little boy sure knows how to keep all of us on our toes! I thought for sure his surgeon would cancel surgery, but, thankfully, I was wrong. As of now, surgery is still scheduled for Monday! I say that, with a bit of fear and excitement all in one.
It’s been a long week around here. Sam getting sick is no comparison to my other kids getting sick. We don’t know what we would do without our home care nurses. Thank you so much to all of you. It’s because of you we get to keep Sam at home.
Also, another shout out to his care team. They are the best. As you can imagine, Sam has a pretty big care team. Depending on what’s going on with him, we call the appropriate specialty. Often, we call a few different specialties, because there are so many things going on. Each different specialty works together with the other. Communication between Sam’s care team is one, in my opinion, of the many reasons Sam is still here today.
Remember the doctor who had the bad reviews? He is the main surgeon who will be doing Sam’s upcoming surgery. When we called his care team to let him know what had been going on with Sam, they told me a few times, he wouldn’t get back to me until the next day, as he was going to be in surgery all day. Makes sense. Guess what? He might have been in surgery all day, but he called me personally that evening. Any of you who are in the medical world or have had surgery, know, surgeons often go through their nurses. They don’t generally call their patients personally. Every time, we have had concern with Sam, he calls me personally. Yet another reason, I get a bit fired up when I see the bad “Google” reviews on him. : )
We had to cancel a lot of appointments for Sam this week, but we didn’t end up having to cancel his haircut. We are so fortunate to find someone who will come to our house to cut his hair.