Brinley Noel: Post Palate (or not) Surgery Update

Brinley’s surgery went great! Her recovery is the hard part right now. She’s extremely uncomfortable and not sleeping much from a combination of pain, not being at home and maybe even some tummy troubles with all the different pain meds in her (not sure about that one). Please continue to pray for quick healing of her mouth.

As for the surgery itself, it went great, as I mentioned, but it didn’t go down how we expected. Our expectation was a palate reconstruction with maybe a tongue tie release thrown in. What we got was no palate work at all and a whole lot of tongue reconstruction work. That’s right, the whole landscape of her mouth has changed. I will try to remember everything correctly but I don’t have all the right terminology yet so I’m sure I’ll be correcting myself in coming posts (or more likely, my wife will). Her palate actually was pretty intact with only a very small cleft in it that may or may not require surgery in the future. She also has 2 uvulas (or a split one, kinda the same thing) which is fairly common. Dr. A didn’t do any work at the back because she didn’t want any scarring to get in the way of growth and development back there.

Brinley’s tongue before surgery:

· Large lumps of flesh on either side of her tongue, almost looked like wings.

· Many small roundish nodules under her tongue in the front

· Tongue position was very vertical and flopping back to block her airway.

· Didn’t really look much like a tongue to be honest.

Brinley’s tongue after surgery:

· Those large lumps were removed

· Most (maybe all) of those nodules were removed.

· 3 ties on her upper lip were removed and somehow Dr. A lengthened her upper and lower lips by double (not sure how that’s measured but that’s what she said) giving her much better range of motion with them.

· Some work was done reconstructing the base of the tongue allowing it to lie much more normally and not flopping back! This is probably the most important result of this procedure and a real answer to many, many prayers the last 2 years.

· Her tongue actually looks somewhat like a tongue. Small yes, but the texture and shape are tongue-like!

She still has a lot of swelling in her mouth so it’s hard to go into too much detail about the interior beyond what I’ve already said but the size of her lips and mouth is very apparent as soon as you look at her. She still has lots of dried caked on blood on her lips as we haven’t wanted to try cleaning it and causing her more pain and when we suction her we do get some blood still. We’re pretty sure it’s not fresh and just residual she’s coughing up and/or dried blood that gets loosened by saliva but we’ll be glad to see it gone regardless.

The only real sleep she got was when we put her with Sarah on the reclining chair and she’s sleeping again with Sarah as I write this post. Sleep is the best thing for her right now. We’re feeding her fairly small amounts but she’s tolerating it well so we’re not too concerned about nutrition. Pain meds can slow digestion so we didn’t want to give her too much too quick. Sarah and I didn’t get much sleep but we’re doing well regardless. It’s hard to see Brinley in such pain but we’re excited at the possibilities and progress she’ll make as she heals. Dr. A says she is cleared to resume therapies as soon as she is feeling up to it (just no passy muir for a couple weeks) so that’s nice. She won’t get too far behind and she usually enjoys her therapy sessions.

Oh, and the tongue tie we were expecting to be released… that was the one tie that was left alone. Go figure. We are so thankful for an awesome team led by Dr. A that did an amazing job. She is such a brilliant surgeon and we are truly blessed to have her for our Brinley. The anesthesiologist team did fantastic work too with Brinley coming out of anesthesia amazingly well this time. Thank you everyone for all the prayers and words of encouragement. We will hopefully be going home tomorrow if Brin continues to improve! Alessa had a great first day of preschool so thank you to friends and family that made that a special time for her! All our girls have been well taken care of and they are enjoying some fun time with grandparents while we are with Brinley.

Sorry this took so long to get to you. I wasn’t able to get my laptop on the wifi in the hospital so I had to wait until I got a chance to go to Panera and upload it there.

Just before surgery

Just after surgery (really)

One of her few times actually sleeping

She was only happy when mommy was with her. A nurse kicked mommy out and Brinley glared at her, then screamed for hours until she could lay down with mommy again.