So it's been since 9:15 am since Faith went back, just over 3 hours ago. First she had a MLB (something Laryngoscopy Bronchoscopy) by the famous Dr. Robin Cotton (he's famous among kiddos with trachs and airway issues anyway), his part took about 15 minutes or so and he came out and talked with us and told us her airway below her trach looks great but that as expected, her upper airway (back of her mouth) is still significantly blocked by her tongue. He thinks that the jaw distraction will be the main surgery she will need to eventually get her trach out, but he cautioned that we should proceed very slowly in making the decision to decannulate (take out her trach) her. He thinks she may also need a tonsilectomy in the future to help with creating adequate space in her upper airway, which is fairly typical for kids like Faith with micrognatia (small lower jaw), but we haven't heard that from anyone else yet. Plus it can cause speech issues, so I'm not too happy to add that to her list of future surgeries and will definitely be hoping it isn't needed or that maybe "shaving" her tonsils instead is an option. I actually don't know much about shaving the tonsils, but I've been hearing other parents talking about it as a newer option that some doctors are now doing, so something new to start researching down the road.
Dr. Gordon has been in surgery with her now for close to 3 hours and I'm starting to feel very nervous about it. It's hard to know that her surgery is taking a lot longer than initially expected - how can that not be concerning that something is not going well?
Ahh, it's over. Gotta go meet with them.
3 comments:
We're so glad that Faith's surgery appears to be over and has gone well. Please know that you all are in our thoughts and prayers
Nancy and Lynne
I have been thinking about Miss Faith a lot! I decided to check out the blog and was overwhelmed with everything going on. Robin I am so sorry about your job, but I am so glad you are able to be right there with Faith through everything. I am so happy for Faith in this big step towards decannulation and more language development. She is such and amazing little girl and I really miss working with her! My thoughts and prayers are with you, your family and of course Miss Faith!
Lindsay Plants
Robin, checked on a whim and found you've been updating the site. 'Course I know this news so far, but anxiously waiting to hear how Faith is doing! Hope the rest of you are holding up as well and getting some much needed rest!
I'm SO looking forward to seeing you next week!
Love you all!
Terry
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