Theo came home tonight! And we have a potential answer. He did a barium swallow study today, and the speech pathologist noticed that he was close to having his drink go down the wrong pipe. Apparently some kids, particularly those who have had laryngomalacia, can have trouble with accidentally sending their food/drink down the wrong pipe. If he did have food/drink go down the wrong pipe, that could’ve caused a throat infection, which could be what he’s experiencing now. The only problems with this theory are that (1) the throat culture did not grow bacteria and (2) our doctor came in at the end of the day to say that he thinks that the swallow study was influenced by the fact that he just had surgery and, therefore, we can’t rely on this conclusion.
But guess what…a bunch of really scary tests came back negative. Also, the cardiologist did an echo and confirmed that he *does* have a heart murmur (which didn’t show up until now because apparently some heart murmurs show up in toddlerhood!!), but she said it was common and nothing to worry about.
So now that we’ve ruled out a bunch of scary stuff, I’m finally breathing a sigh of relief. The swallow study may not have been accurate, and this may not be the *exact* diagnosis. We’ll have to work with the pulmonologist going forward to get to the bottom of this. But for now, I feel much better that we’ve been able to rule things out, and I’m SO very happy to have him home!
Thank you for thinking of us!!! ❤ It’s been quite an ordeal…
Our prayers r with the little angel. Dont worry, things will get better.it takes huge courage to share ur worst experience s ans feelings.My son was one of the triplets nd was born with hernia, urinary reflux, hypotonia.my daughter is ok.but my son ia mow 11 ns he is not able to cope up mainstream nd lots of behavioral issue. Ww hav not tested for any syndrome .life seems to b difficult wwn our xhildren hav some problems.lets hope for the best.
I just found your blog while doing research on Williams syndrome for school. I have more exams that I can handle this week but I had to stop and read your blog. I really hope that you get good news for Theo and that he ( and your family) can breath easier. I will be following your blog and praying for good health for your family. I will be back and post during the winter break when I get a chance to read through your previous posts.
I hope you have a wonderful holiday!