Wednesday, September 17, 2014

A visit to ACH

At the end of August, we had a check up for Reed at the NWA branch of ACH. The day of his check up was exactly ONE YEAR after his first surgery. I remember that day so vividly.


This follow up was eight months after his last surgery. Reed definitely knew what we were doing and he was a little skeptical.IMG_1653

When his doctor came in, he perked right up and then asked him if he flew in a helicopter there. He’s all about helicopters these days. The doctor laughed and told him no. He looked at him and examined his throat/neck and his scar.

He said that at this time, there is no evidence of his cyst having returned. MOST of the time, these cysts return within the first couple of months after surgery. The safe zone is usually around a year, so we are getting close to that. However, his doctor reminded me that with Reed’s complicated history of being a “problem child”, the statistics probably don’t apply in our case. He said Reed’s case has been anything but typical or textbook, so that he was hesitant to say we were in the clear. He also told me that since he last saw us, he had a case come up where someone came back to him with the cyst returning after TEN years. Crazy!!!

Our next step is to continue to monitor him and call them immediately if we find any lumps, bumps, redness or swelling. We’re very hopeful and optimistic that we won’t have any of that. If we don’t, then we will return to see them in a year. At that time, we will need to discuss the next surgery he needs. Because he had two surgeries so close together, and because they weren’t 100% sure, they weren’t going back in, there are three areas on his scar that didn’t heal nicely. At the ends of the scar, his skin comes together in what look like pointy dog ears. These have bothered me since he had his surgery so I was glad to hear his doctor address them. The skin was very thin and he said when they were in there, their main concern was getting as much cleaned out as they could. There is also a spot where the skin is very skin and has stayed pinkish in color. In probably two years, once we’ve more than likely reached a safe point, he’ll go back and have one more surgery to correct these scar issues. It will be an outpatient procedure but it will clean up the area, which I’m thankful for. Of course scars are just cosmetic, but with it being in an area so prominent on his face, I would rather get it corrected than to have him have to deal with it. The points are very noticeable and I don’t want that to ever be a source of embarrassment or give way to teasing for him.  IMG_1656

So, here we are. Now we wait (again). We are truthfully so thankful that he is healthy right now. I was actually looking back at some photos from around the times he had his surgeries, and I can’t believe I’d forgotten how BAD things got for him. There are a lot of photos I took to send to the nurses and doctor that I never shared publicly and it was so crazy to see those again. I know his situation wasn’t life threatening, but it pretty serious. It’s certainly not normal for a 2 year old to walk around with a hole in his chin! I’m just so grateful we’ve come so far and that we have a healthy little boy! I’m so very grateful to his team at ACH for their amazing care and support. We’re so blessed to have such phenomenal healthcare here in our little state!

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The Edwards Family

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