This past week Malia had surgery to correct the fistula in the roof of her mouth. We're pretty excited about this surgery because it means Malia will no longer have food and liquids coming through her nose when she eats, and it means no more snot entering her mouth when she cries or has a cold. Poor girl has had times where she is completely grossed out and disgusted by what enters her mouth! If you can imagine food sitting in the nasal passage for a few days and then entering your mouth! YUCK!!
This procedure is called a FAMM flap. It's basically taking tissue from the inside cheek in a rope like fashion, fastening it to cover the fistula (or hole), leaving the tissue attached to the inside cheek. We've been told it feels like biting on the inside of your cheek if you happen to accidently chomp down on this string like tissue.
Curiosity got the best of me while waiting for Malia's surgery to be done, and I couldn't help but do some research. I found this video of an actual FAMM flap procedure. Be warned...only watch if you have a tough gut!
The video made my tummy roll and honestly, I couldn't watch every part of it and had to keep glancing away. However, I am glad I watched it! It gave me a much better understanding of the procedure and it is helping us better care for Malia's needs.
Malia HATES surgeries! Can't say I blame her! This is her 5th procedure since joining our family and we know she had at least 2 major procedures in China. The part she dreads the most is the anesthetic. She despises the smell! Even if it smells like bubble gum! She says it makes her feel like vomiting. So, this time she opted to have no additional smells added and thought it was a bit better.
A few weeks ago, when Malia's surgery was cancelled, one of the nurses mentioned that I would leave the OR once Malia was asleep. Malia's eyes grew wide with fear. We've always been able to keep her calm by telling her we will be with her while she falls asleep and we'll be there when she awakens...conveniently not talking about where we are during the surgery.
This time was different. Our poor girl cried and was agitated as she fell asleep...even the anesthesiologists' ipad couldn't distract her. She fell asleep with tears running down her cheeks. Thankfully, I was able to hold her and talk to her until she fell asleep. Thankfully, it didn't take long for her to fall asleep.
The surgery took about 2 hours and then I was able to join her in the recovery room. She was in a lot of pain at first and it took several doses of morphine to keep the pain at bay.
It may sound odd, but I'm thankful that Malia is able to express that she is feeling pain. That hasn't always been the case and she still struggles to tell us when she is in pain. As some of you may know, a child with lots of trauma, where the basic comfort of a loving parent has been absent, can lead to an unhealthy pain tolerance. It's a means of survival, a coping mechanism.
So, long story short...if this little love tells us she's in pain...we KNOW she's in a LOT of pain!
I'm always amazed at how quickly kids heal after surgery. Malia's face was quite swollen and bruised. As you can see, she has a bit of a "cut" on her right upper lip. It's basically a "stitch" to keep the cheek/lip in place so it doesn't move, disrupting the graft. (Keep in mind, I'm not a medical doctor and what I've written is based on my understanding of the procedure)
By the time Malia was moved to her room she was more than ready to eat. She managed to eat some yogurt and pudding and drink some Boost. Poor girl had a hard time swallowing.
Falling asleep that night was very frustrating for her. Malia is used to an 8-8:30ish bedtime. Well, the little 4 year old next to us thought it was cool to watch cartoons till 11:30pm! I actually had to chuckle at some of the comments Malia made..."Mom! Now I know how you feel when Jackson always wakes you up at night!" Lol!
After spending the night on a 2 ft wide mat placed on the floor with a hard pillow and thin blanket, waking a million times, hearing all the beeps...let's just say...I really feel for all the parents that spend days or weeks on end at their child's bedside! My hats off to you! You are incredibly strong!
One of the benefits of being in the hospital...playing on the ipod without a time limit! :)
In 3 weeks, Malia will have day surgery to sever the string like tissue. But until then, she is on a soft food diet. She is not allowed to use utensils, so she is either drinking her food or using this syringe.
Malia is on antibiotics, Tylenol and Advil. Originally, she was only on Tylenol and antibiotics, but the pain was becoming unmanageable 2 hours after taking meds, so we got the ok to also use Advil, alternating between the 2; so Malia gets pain meds every 2 hours...for now. Hopefully, we can cut back on that in the next day or so.
Today, the pain is barely kept at bay with meds every 2 hours. The swelling has gone down a bit, and the bruising is less noticeable and is mostly under her chin.
Malia is very self conscious and has made it very clear that she doesn't want anyone to see her. I happen to think she looks amazing!
1 comment:
Marie, how is Malia doing now? Did the FAMM flap solve the fistula problem? How did her recovery go? We are talking to our surgeon about a FAMM flap for my daughter. The post-op sounds pretty difficult. I'm just wondering how it went for you guys.
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