Post-op Update

I am so sorry that we haven't updated the blog sooner but we've been fairly busy. I hear there is still some confusion surrounding the surgery and what was worked on so I am going to try to clarify. Last January Brinley had her "duplicate toe removal" and while she was under anesthesia her ENT took a camera and looked at her mouth and airway. At that time we were told that she did not have a tongue, it was just a mass of tissue where a tongue should be. It also occluded (blocked) her airway and was the reason that she has a trach. At that time he and the plastic surgeon said that they could not do any reconstructive procedures because there simply was not enough to work with. The only option given to us was a 30 hour procedure (with 1 Dr doing the work!) when Brin hit adulthood. They would have harvested mature calf muscle and created a tongue that could be more cosmetic than functional. I digress, but please keep in mind this ENT is excellent at what he does and I am confident that the changes that have come are a result of all of our prayers and a miracle from our mighty God! 

Leading up to surgery it was thought that Brinley needed a cleft pallet repair and a reorientation of the musculature at the top/far back part of her mouth. The surgeon had us sign several wavers though as she was not sure what exactly she would find once she went in. What she found was that while Brinley does have a cleft, it is very small. She said there are a lot of people walking around eating, speaking, drinking with a cleft just like Brin's. It may or may not have to be fixed down the road and that will be determined by her speech capabilities. The musculature was also fine (she had given us a 15% chance that this would be the case) and she noticed that the tongue had grown considerably so...she took the nodules and lobes out, somehow reconstructed the base of the tongue so that it now comes down and out instead of up and into the airway. It is still shorter than a typical tongue but it has taste buds, is mostly the right shape and it's THERE! She also released 3 "ties" on the upper lip and was able to get twice the range of motion on both lips. This will help with speech. 

Wednesday we had our follow up appointment with the plastic surgeon. She was very pleased with Brinley's recovery and Brin was cleared to use her passy muir (speaking valve) again. Down the road we will be looking at:

*Phase 2 of the toe procedure, it involves the growth plate so that won't be for a few more years...

*A tongue lengthening procedure (most likely in her teens)

*Some sort of dental stuff I am sure, but we won't be referred to them for a year or two still. 

All of this brings us to our next step which will be meeting with the ENT, getting a swallow study and determining if Brinley still needs the trach. Her SATS (oxygen level in her blood) have been amazing since surgery. She doesn't really gag on her tongue anymore either. Which is simply amazing because it was so.hard.to.watch. We felt so helpless! I am excited that the ENT will be able to make his decision based solely on the airway needs and not having to keep other procudures/timing and such in mind. The swallow study will also give us a good idea if Brinley still needs to be on her reflux medication. We are hoping to be able to take her off of it soon because there are some negative side affects of prolonged usage. 

Hopefully that made things more clear. Please feel free to ask questions. Our prayer points are *that she would relearn to swallow her secretions *that she would start crawling. There are more, but those are the major two at this point.

Before and After

Doing her own neb treatment- very independent lately! 

Baby tongue!

Playtime with R (SEIT)

All sprawled out

Nurse A giving Brin a back rub. She bucks and grunts if you stop.

Friends! (Nurse H's little guy)

This little girl is such a champ and is acting two already! If you want to come celebrate her birthday with us please feel free and shoot me an e-mail or text. All the information is in the previous blog post. 

A huge thank you to each and every one of you for your prayers and meals- you continue to be God's hands and feet and bless us so much! We are excited to plug back into life with all of you now that procedures are winding down for a while!