The light at the end of the tunnel

It’s been 24 hours. 24 hours since bug has not thrown up. I see the light at the end of the longest 8 days of my life so far. I know, I sound dramatic. It’s not just the new parent thing though.

For most parents, when your kid is sick… life pretty much sucks. I’m right there with you, but my fears are much worse. When bug throws up… it’s really intense. She chokes. It comes out her nose. Violently. She not only throws up but her whole body stiffens as she throws herself back because her body just can’t take anymore. She can’t breathe for seconds. You can tell she’s in a lot of pain. It’s torture to watch. She also throws up a LOT. More than I do when I’m sick I feel like.

And it happened for 6 straight days, then a little the 7th, then a TON on the 8th. We saw the insides of a scary ER. We saw the pediatrician twice. We saw someone at urgent care who literally tried to put that light thingy they shine in your ear…. in her ears that don’t have canals. Umm.. hey doc, notice anything different about her? You went to medical school, right?

At first everyone said stomach bug. Bug has a bug. Okay, sounds fine. Then it would happen again. After eating different food and at a different time of day. Then it would happen the next night over and over again after a bottle. Then the next day after not eating for 3 hours. Again and again. A slight fever cropped up. Round and round I went on the phone with doctors. Not sleeping and on google.

Finally, I asked mothers. I asked regular moms and TCS moms. The mothers… they gave me my answer that her doctors could not. An ear infection. One boy with TCS even told me how common they’ve been for him his whole life. With small everything, infections are easier to manifest themselves. The ENT confirmed. This is how you have to diagnose kids with microtia atresia. You kind of have to guess.

So one bottle of strawberry amoxicillin later and we’re on our way to feeling normal again. To forgetting again that TCS will make things just a little bit harder sometimes.

Diagnosing any infection, be it ear or sinuses for bug requires a ct scan. I really didn’t want to do one yet, so I’ll have to guess. I’ll have to look for any signs so that we protect the hearing she has. I wouldn’t be able to forgive myself if something went undiagnosed, untreated, and she lost more of her hearing.

I just read this story about this beautiful boy who had TCS who passed away…. from eating a fruit snack. It was just too big for his little airway and he choked. The streets of heaven are too crowded with angels now. After just watching Landon struggle and suffer while sick, I cannot imagine this mother’s pain and grief. When I see this boy’s picture, I see Landon. I feel so deeply for this mother.

We take her syndrome in stride now. We know what we need to do, have to do and pretty much forget she has it. This last week has been an important reminder. A reminder that she is a little bit different. I have to be on guard a little bit more. Be more watchful. More conscious of my bug and not take anything for granted.

My heart goes out to Julie and her family and all they’ve been through in the last year. From now on, we’ll live our lives in honor of Jonah. To keep his precious memory alive.



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