Post Op Days 1 - 4

So hard to find time to write or to even make phone calls to let everyone know how she is doing, I started this post late last night and realized I had to stop and try to sleep and it's taken me till 10pm tonight to start again.  I've relied a bit on Facebook and text messaging from my phone to at least give a few updates.  But I want to keep up her blog because it's a better place to journal, I can write more details, post pictures I wouldn't put on Facebook and it's a keepsake for Faith to know what she went through someday when she grows up and wants to know more.  Probably too much!!

Seeing Faith after surgery was difficult.  They finally let me come back to the PACU (forgot what it stands for, but basically it's the recovery area for same day surgery) to see her and she was upset and trying to talk but I couldn't understand anything.  She was in pain and it was not a pretty sight (skip to the next paragraph if you don't have a strong stomach for this stuff) - Dr. Gordon didn't cut her skin anywhere except a small hole under her chin, but he was able to get to her upper jaw/cheek bones through her mouth and by pulling open/down her eyelids.  I'm grateful she won't have external scars, but it is really gross.  She was bleeding from every opening - her eyes were the worst, her nose, and mouth.  They tried to clean her up before I saw her, but I don't think there was really a way to get her clean for any length of time - I've been seeing it for the last three days.  Luckily the bleeding pretty much stopped yesterday (Saturday).

I'm going to post pictures in reverse order here to try to minimize some of the shock, you can decide when you have seen enough!!

POST-OP DAY 4: Sunday, 6/21 - Father's Day

Happy Father's Day to Fred from Anthony and Faith!  Not the best way to celebrate, but as a dad, you just do what you gotta do for your kids. Faith was a little cranky this morning, so she wasn't very sweet to Daddy.  Luckily she wrote him a nice Father's day card before we left Denver and she did hand it to him this morning.

Faith managed to sit up by herself today too.  She likes to hold her head and then pull herself up - helping her is definitely off limits right now.  She doesn't trust that anyone else can help her without bumping or going too fast or doing something that would make it hurt more than it already does. She also managed to slide out of the bed and into my lap so the nurse could change her sweaty sheets and give her a clean gown.

Towards the end of the day today old friends from Colorado, Keshena, Dennis, Aidan, Colin and Evan, who moved to Columbus OH awhile back drove down to visit us.  Faith was happy to see them and they brought her lot's of gifts.  I didn't get a picture of all of us, but a cute picture of the boys and Anthony together...

POST-OP DAY 2 or 3 (it's all a blur now):  6/20 or 21, The swelling has gone down substantially and she was starting to be able to open her left eye.  You can see she looks somewhat comfortable and is watching TV.  The beautiful quilt on the bed was a gift from the Ronald McDonald House when we arrived on Tuesday - some wonderful volunteer couldn't have put together a prettier collection of prints for this.  So nice to have something pretty to look at!

POST-OP DAY 1:  This is in the PICU the day after surgery and just after being taken off the ventilator and put on a cool mist humidifier.  We fluctuated between room air and oxygen depending on her blood oxygen saturation level.  It was interesting that while she was in the PICU all the doctors, residents, nurses, respiratory therapists do rounds outside of the kids rooms and invite the parents to join as well.  Fred noticed that it looked like what my teams do at work when we do daily stand-ups.  He is exactly right, the team goes around and talks about the kids latest stats and the goals for the day.  

POST-OP - Day 0 - Wednesday 6/17, this is after we got settled into her PICU room they allow Anthony to come back and see her fro about 15 minutes.  I love this picture, because he did exactly the same thing the first time he ever saw Faith after she was born and he was only 2.5 yrs old!!  She is a bloody sight in this pic, but Anthony managed to ignore it all and just give her a little comfort.

All for tonight.  We are really hoping Faith will get discharged tomorrow, but need to just wait and see how it goes tomorrow.

Goodnight,
Robin

Surgery Day - June 17

So today is Faith's 4th big jaw surgery.
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!!

She went back into surgery today around 9:30 am, and Dr. Robin Cotton, a really well-known ENT did her bronchoscopy and then came to show us the results (pictures).  Basically, they cannot see past her epiglottis when she is resting, but they are able to see her vocal cords once they manipulate her jaw forward and pass the endoscopic tube down her throat.  Hopefully when he does it again at the end of the distraction it will look significantly better.

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

Before Surgery Pics

Took these pics yesterday. So this will be the comparison when she is all done!

Before: forward facing

 Before: Left Side (scapula graft/worse side)

Before: Right Side (good side)

Close up of her teeth!!

On Our Way to Cincinnati!

Hit the highway at 9:24 am, thought we were gonna start before 8, but not being on a strict schedule and being able to take lots more than you can when you're flying caused a bit of a delay! Kids are happy in the backseat watching a movie on the DVD player, so we're off to an easy start!

The plan is to drive ~ 9-10 hrs to Kansas City today. I thought I found a great hotel with a water park in it, until I discovered that they close at 6 pm on Sundays and are closed all day on Mondays and read some crummy reviews about the hotel too. Oh well we'll just sleep and get back on the road in the morning!

On Monday we are driving to Indianapolis, about 2 hrs from Cincy. Our niece, Meghan, hooked us up with some discounted rates, but couldn't find anything in Cincy for Monday night , so figured it would be a nice way to break up the driving to stop in Indianapolis.

On Tuesday we go straight to the hospital to see Dr. Gordon and have him explain his surgical plan for Wednesday. On the phone Friday his nurse told me it will be both the lower and the upper jaw. I learned a lot about the upper jaw surgery years ago, called a LeFort II, but she said he is doing some something between a LeFort II and III and I realized I had no idea what the difference was.
I looked it up after getting off the phone and it just means the cut the bone in a different place. It kinda shook me up, it involves her eye sockets and the bridge of her nose. I almost want to say no. I'm having to trust him more than ever. Thankfully thus is his fourth time working on Faith and we've always had good results in the past. He also said for us to expect her to be in the hospital for 5-7 days. That's a LOT longer than the 1-3 nights I was thinking it would be.

We are staying at the Ronald McDonald House from Tuesday - Sunday, but now Faith probably won't get to spend more than the first night there. It still will be much easier for us as we can walk back and forth from the hospital anytime to trade shifts or go shower or get a bite to eat.

I will try to post a little every day or two to keep everyone up to date. Thanks for reading!!

Robin

Good morning Faith😊😀

1st Day of New School

Tuesday (8/12) was the first day of school for Faith who is now going to Cougar Run. She was so excited and happy, it wasn't until this weekend that I think she even realized she misses her old friends at Summit View!

Her new teacher, Mrs. Dimino, seems very sweet and has been there for around 10 years I believe. I think Faith is very happy in her class.

I re-did the info "booklet" I had done a couple years ago and changed it from being about her upcoming surgery to just being about Faith; who she is and what's different about her and lots of cute pictures.

I came in and chatted with the class on Friday and it was funny how the conversation about Faith and her surgeries quickly changed to be about all the kids in the class and their surgeries (must have been at least 5 kids who have had tonsillectomies!!) and trips to the hospital for stitches!! I thought it was perfect because they were relating to Faith's experiences with their own.

So, since the booklet includes this blog's address, this is probably a good time to welcome any new readers!! Thank you for coming to read more about Faith and feel free to add your comments!

I'll try to upload the booklet soon for those of you who didn't get to see it yet! More pics coming soon too.

Robin