Begging My Child To Eat – A.K.A. Pharyngeal Flap Recovery

We all survived Bella’s pharyngeal flap (p-flap) surgery with Dr. Stephen Beals to help correct her velopharyngeal insufficiency.   The surgery went smoothly, no big surprises or complications, which is exactly what mother hopes for.   The surgical team was amazing.  Dr. Beals and Dr. Drewson are phenomenal, and I truly believe we worked with the best people possible on this.    We’ve had 1.5 years to plan (and delay) this surgery, and during that time every person who heard that Dr. Beals was our surgeon replied with “oh, he’s the best”.

The pre-op nurses at St. Joe’s ROCKED.    We kept Bella very busy in pre-op, and then Dr. Drewson gave her the magical elixir known as Versed, and while she didn’t appear “drugged” or “silly” as I’ve heard, she could have cared less when we had to leave.   Though she was a little upset when they took the Nintendo she was playing away.  Either way, she didn’t fuss or get upset.  God Bless Versed.

The recovery room was not a pretty site.  She came out of anesthesia very violently, was screaming (well as much as one can when they’ve just had their throat cut up), trying to pull out her IV’s and the tube in her nose to help her breathe, and was swollen and had blood on her face.   It was the most heartbreaking thing to see, and I pretty much decided that there was a special seat in hell for me for putting my poor child through this.  They got some demerol in her system, and she eventually calmed down.  She would doze in and out, but the “in” always included her attempting to scream and cry, and her pain was very apparent.

Even though we’d worked very hard to get a 23 hour stay approved (vs outpatient), the post-op nurse was all set to get us out of there “as soon as possible”.   All while my child is out of it on pain meds, and we are having to hold an oxygen mask to her face because her oxygen keeps dropping and the monitor alarm keeps screaming about it.   After an hour or so, with very mixed emotion to go ahead and head home.   Dr. Drewson actually helped me make the decision, she said look, we will do whatever you want, but staying here you risk infection, she won’t be as comfortable, and frankly you’ll be pissed off most the time because the nurses won’t be getting her meds on time.  Good point on that last one.

So home we went.  For the first few hours were rough, but about four hours after we got home, this child shocked all of us.  She was sitting up in bed, drinking, and asking  to open presents (I had stockpiled some small gifts for her and wrapped them all – they were a nice distraction whenever her nerves hit before surgery, I’d have her look at the presents and decide in which order she wanted to open them).   A few hours later I was so glad we came home, because she would haven been bored out of her mind at the hospital.  She was playing Mario Kart on the Wii (in her bed – with the post-surgical entertainment center we set up for her), watching movies and chatting as much as she could.

The first night was a long night.  I slept in her room, and the pain was certainly a challenge.   Every day it gets a little better and more manageable.   She is a TOUGH cookie.   The first two days she kept crying for something more to eat than the clear fluids she was restricted to.   Unfortunately when day three hit and she could finally have milkshakes and soups, her appetite was gone.   My full time job became getting her to take the tinest sips of juice.   I think Tuesday she maybe consumed 12 oz of fluid over the entire day.   She’d break down in tears, and couldn’t pinpoint why it was so hard to drink (she didn’t feel it was the pain, she said more her tummy was too full).

We are now at the one week mark (YAY!!!!) but drinking and consuming anything is still our greatest challenge.  She’s down seven pounds, and I haven’t had her on the scale in two days, so we may be closer to 9 or 10.   She’s eating a teeny tiny bit of ice cream and pudding, and every five minutes I’m forcing her to sip her juice.   On Tuesday she can eat things like mac n’ cheese, and she keeps wanting that, so I pray when we get to Tuesday, she will eat more.   Watching her lose weight like this is so hard, I hug her and just feel bones everywhere. 

Aside from that we have the most amazing support team around us – my parents, siblings and our friends, especially her dance teachers Jen and Tawnya have been amazing, and have gone to such great lengths to help her feel better, and to work with us on getting her to eat and drink.   Jen and Tawnya have showed up many times, milkshakes in hand, and spent considerable time with her trying to get even a little bit of them down.   We are really blessed with fantastic people in our lives.   She’s gotten some cards and gifts in the mail that have made her feel really special as well.

Many people are surprised that her voice doesn’t sound too different (myself included).  But in five weeks we will return to speech therapy, where she will have to start a very intensive speech therapy program.   I’m hoping we can work with the amazing Deborah Leach down at Barrow.  The entire Cranio Facial Team down at Barrow’s is truly amazing.   Top notch.   We’re very fortunate to have access to such talented individuals.   Bella will have to re-learn to talk in a way.   She learned to compensate for structural problems, which is fabulous, but now she needs to learn to talk correctly, and using the new tool (p-flap) that she has in place.

It’s been a long week!    Two little girls.  Lots of crying from both.   Trying to keep everyone as comfortable and hydrated as possible.   As hard as it’s been, it’s nice to spend so much time with both my girls, with no schedule or clock to watch.   Gotta find that silver lining.