Here's the history...
2 yrs old - first jaw distraction - gained a good couple centimeters and she was able to really start talking and wearing a passy muir valve (one way speaking valve).
5 yrs old - scapula free flap graft - took part of her shoulder blade and some surrounding tissue to build up her left lower mandible where no bone was from birth. Gained some additional airway.
6 yrs old - second jaw distraction - gained another couple centimeters of growth. She was able to be capped all day following surgery, but failed a sleep study to be a candidate for decanulation (removal of her trach tube).
8 yrs old - third jaw distraction plus LeFort III - starts today. Will turn pins for 3-4 weeks and adjust as needed before finishing and removing hardware to solidify.
On top of these major surgeries she's had a lot of smaller surgeries including being trached when she was just 4 hours old, gastrostomy tube and Nissen Fundoplication at 10 days old, bone anchored hearings aids around 2 yrs old plus a couple hiatal hernia repairs (that failed) thrown in the mix.
I've lost track of what number this is, but bottom line, it's been a lot!! It's always hard, but we get through it. She cried going back this time, I don't remember her doing that before so it made me want to cry too. I held it back until we turned to walk away. :(
She did have some fun initially playing UNO with Anthony while the nurse collected all her pre-op info, but once it was time to get the gown on and even with some Versed medicine (an amnesiac that usually makes her a little goofy) she started to get scared. I'm surprised she hasn't been a mess for weeks, I sure started to lose it last week when I found out everything Dr. Gordon was planning to do.Basically this time he decided to do both her lower jaw and her upper jaw. But the upper jaw is way more involved. There are three basic types of upper jaw surgeries - classified as a LeFort I, II or III depending on where they make the cuts. Dr. Gordon said he was doing something in between a II and III. If you Google the LeFort II and III you will see why I got upset - it's just so extensive - cuts through her nose and around her eyes it's just gross and an awful lot.
On the good side though, Fred's parents found this YouTube video (https://www.youtube.com/watch?v=GnP12pX1T9s) about a young girl Melissa who had a LeFort III mid-face advancement and the before and after change is really impressive. But as a parent who has grown to love their child's face just the way it is, you really don't want it to change!!
After that Dr. Gordon was able to get started. He finished around 3:50 and came to talk to us - said it went really well, he had thought she would need to have a blood transfusion during surgery, but she did not - said she only lost about 100 ccs of blood during the whole thing.
It's 6:00 and I still haven't gotten to go see her. I had to start asking what the delay was and learned she was having some issues with her oxygen level. Blood drainage was going down her airway and so they needed to take care of that by putting a cuffed trach in (see here to learn what a cuffed trach is: http://trachs.com/cuffed-and-cuffless-tracheostomy-tubes/). This will prevent the blood from being able to go down her airway and into her lungs. Anyway, they finally called me back to see her...
4 hours later ...
Okay, we got to see her and she is doing good... well that might be an overstatement, but she is sleeping now with a fair amount of help from pain killers (she's on a continuous fentanyl drip) and she is on a ventilator for the night. I hope she comes off of it in the morning, but we have to see how long it takes to wean her oxygen (she's at 40% right now and needs to get back to room air).
They just offered me a sleep room and since she's very drugged up I think I will go take advantage of it instead of trying to sleep here in the hospital room with her. Fred and Anthony are back at the Ronald McDonald House for the night and even though it's right next door I would rather be here with her overnight.
I will upload a couple post-surgery pictures of her tomorrow.
Goodnight and thank you all for all the great text and Facebook messages, means a lot!!
Robin
4 comments:
Robin, I cried and cried while reading this post. Sweet little Faith is going through so much more this time and she is so brave! I am wishing great success with this surgery and hoping that Faith (and all of you) won't have to endure many more surgeries, especially any as extensive and traumatic as this one has proven so far.
As difficult as it has been, I know you and Fred have carefully considered the options and made the best decisions for Faith. One day, hopefully very soon, she will have a good open airway because you made the right choices.
I wish I could be there now to comfort and encourage you. Your post helps me feel as if I AM there. Thank you for this update. I look forward to reading more news soon and will keep my phone nearby if you wish to talk.
Has Faith awakened yet since her surgery? How is her recovery going this morning? Are they managing her pain well?
Perry, Mikki, and I are thinking of you, Fred, Anthony, and especially sweet Faith--every minute--and we send lots of love and healing wishes!
With so much love, always
Aunt Terry
Hi Robin and Faith,
All I can say is wow what a day. I admire your strength and perseverance. I am glad Robin, you are not going through this alone this time and that Fred and Anthony can give and receive comfort. I know the coming days will be difficult, but I have faith all of you will be able to get through them. Thank you for sharing, Robin.
The team here is keeping the home fires lit. You've assembled a very capable team. All of us are thinking about you and your family.
God bless,
Bonnie
Robin....just read Faith's Blog about the surgery. Thanks for describing everyhting so well....you made it very easy to understand.
Just hoping and praying that her suffering will be controlled as much as humanly possible!
I also want to echo everything that Terry and Bonnie said....(wish I had Terry's gift for expressing everything she feels!)
Remember once in a while to wrap your arms around your shoulders and squeeze and take it as a strong hug of support from all your family and friends who love you and family, and especially Faith!
Love, Mom
Dear Robin, Hope you had a good nights sleep, as well as Faith. It certainly was a very stressful day for you, Fred, Anthony as well as Faith. We want to thank you for the detailed report of the operation. You sounded like a doctors assistant. It allowed us to understand the operation and what Faith went thru. Now that she is almost nine years old she really understands what was ahead of her, and yet she held back her tears until the last minute, that's a good sign of character and strength. She gets this from you and Fred. You two have been thru alot but continue to be strong and giving of yourselves. We love you and are very proud of you. Faith is a real trooper. We appreciate very much keeping all of us up to date with all that you are going thru. Love Bob and Rosemarie
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