Ready for Surgery!

Just waiting for them to wheel her back now. They just gave her a little Versed (amnesiac drug) which helps her relax and forget being put under. She was pretty upset this morning, mostly dreading the IV (actually the removal of the IV as they put the IV in when she is under). Everyone tries to tell her this is an exciting day, but it isn't for her, we are really beginning to see the affects of going through so many surgeries (I'm guessing we are roughly up to 20 times of her going under anesthesia). The really good news is that this could be the last time for many years!
I'll take another picture as soon as they call me back to see her in recovery. I'm guessing this will take less than 30 minutes! And it's outpatient so we will go back to the Ronald McD house this afternoon and then we fly home tomorrow!! I can't wait to be home an I'm sure she will be glad to be home too.
We've really been missing Fred and Anthony not to mention that we completely missed Dana's graduation. Such a disappointment not to be there.

Enjoying the Craft Room

Faith is having fun in the craft room at the Ronald McD house, but you can see where her heart is...

Back to Ronald McDonald House

Finally got a call to get back into the Ronald McDonald House late last night.  I guess we could have packed up and gone over there last night, but it was already 9pm when they called and I wasn't up to packing, plus I think the hotel would have charged us for the night anyway.  So, we went to the pool one last time instead and will go after breakfast this morning.  it's about 7:30 now, and Faith is still sleeping.  I think I can pack up our 3 suitcases (2 are mostly medical supplies and food, just 1 is clothing) in about 15 minutes - so much easier when you are not trying to decide what you need to bring from home.  Turns out we did forget something - spare batteries for Faith's hearing aids! Oh well, I was able to find a CVS store eventually and buy a pack.

We've been having some fun - especially on Sunday when we went to the Reds game.  Unfortunately they lost the game in the 10th inning, but it was a gorgeous day and we really enjoyed being at the ball park.  And they had a free Beach Boys concert afterwards with beach balls provided to keep the crowd busy while they were setting up!  Faith liked that a lot and was a little rude to a few nice people who offered her a small beach ball - she wanted the huge beach ball, which she eventually got!  She was also excited that John Stamos from Full House was performing with the Beach Boys - she even texted Anthony to tell him!  Funny that my kids know him but have no idea who the Beach Boys are.

Faith has been texting Anthony and Daddy a bunch the past few days - it's so cute - here's one she wrote to Anthony on Sunday:
"I mis you Antony somush Love faith"
:)
and one to Fred:
"Der daddy I mis you sow mush love faith"
:)

She started crying on the phone last night because she really misses them a lot and she's also feeling scared about going back into surgery on Wednesday, even though it is the final surgery and they will just be removing the pin through through jaw (ouch!) and taking off the RED device.  She's been complaining a lot over the past few days about her head hurting her.  I think it's actually her neck that is bothering her, she keeps putting her head back to try and stretch it out.  She probably needs a good shoulder and neck massage!

Well, I better get up and get packing here!
More later,
Robin

At the Cincinnati Reds Game

Children's got us tickets to another Reds game! The weather is perfect and the team is number one so far this season! Faith is actually into the game and learning the basics! Nice day!

Surgery Surprise

Sorry it has taken me so long to post!  Normally I try to blog while Faith is in surgery (on Wednesday, May 22nd) but it actually was such a quick surgery I ended up using the time to get lunch and calling my parents.  Then I was busy in the hospital taking care of her for the first night, then we left and went to a hotel (waiting to get back into the Ronald McDonald House) and we've just been keeping very busy until today.

So, let me back up to the beginning of our trip - we left early Monday morning - Fred and Anthony drove us to the airport at 8am and we caught an 11:30 flight to Dayton.  I have to say, getting through security was a pain this time around.  Faith actually had to be frisked (they called it modified becasue they don't touch kids private areas if they can get approval not to) because her RED (halo device) set off the metal detector.  Lesson learned - ask for a wheelchair in the future, then they would have rolled her through a separate gate and only checked her hands with a swab test afterwards. 

Lately Faith's food has been a lot more difficult to bring through security - ever since I've been carrying her homemade blended formula with us I am used to them scanning that in a machine that can scan clear bottles.  But, starting the day of the Boston Marathon bombing, when we were flying home from Kansas City, they've started giving me a hard time about her pre-packaged formula that comes in boxes (like kid's juice boxes).  I've taken this stuff through security many other times with no questions but the past 4 flights I've been on since that day it's  been a problem - so now I have to be frisked or let them open one of the containers (which I have no way to reseal).  I really don't care about being frisked, I don't find it all that big of a deal, but it's just a hassle and for something that is obviously marked children's formula?  Really?  It's stupid.

Anyway, we landed in Dayton and the hosptial shuttle picked us up and drove us to the Ronald McDonald house.  We got there in time for dinner and then we watched a movie in our room.  On Tuesday we went to the zoo.  I borrowed our neighbor's stroller (thank you so much Becca!!) which has been so great to have while we been here and perfect for the zoo.  I am able to put Faith suction machine in the bottom of it and Faith can easily get in and out of it, when she feels like walking.  She really enjoyed the zoo and we took our time, spending as long as we wanted.  We saw the Cheetah show where they run the cheetahs and enjoyed some other favorites like the Polar Bear swimming.

That night was a particularly difficult night - Faith has been off all pain medications for 2 or so weeks now and I ended up forgetting to bring any pain medication with us.  I thought of it once or twice, that I needed to bring it, but I never got around to pulling it out of the cabinet and packing it.  Ugh.  So, for the first time in weeks, Faith started crying and signing that her jaw was hurting.  I didn't know what I was going to do.  Here I am in the Ronald McDonald House, not at home, with no tylenol or anything else and it was after 10pm at that point.  No car to go anywhere and no one to watch Faith while I went anyway.  I was pretty sure it was just anxiety about the surgery that was upsetting her, but still some tylenol or the Oxycodone they gave her for pain would have been really helpful in calming her down and helping her to fall asleep.  I told her the only thing we could do was actually go to the hospital (across the street) to which she said yes.  Oh great - the night before surgery and she wants me to take her to the hospital for some tylenol.  Well, I really didn't want to spend the night in the ER, so I had to tell her a couple of times let's just wait and see.  Finally I thought of at least turning her pins backward at least one turn to release some of the tension.  That seemed to help enough for her to fall asleep.  Whew!

The next morning she seemed much better.  Her surgery was scheduled for the afternoon, so we had time in the morning to get checked out of the Ronald McDonald House and go to the hospital for her x-rays and visit the gift shop (again!!!).  Then we went to check in for her surgery and they sent us back for the pre-check stuff and to talk with the surgeons before the surgery.  We met the ENT surgeon who was scheduled to do her tonsillectomy and I was able to ask a question about whether removing the adenoids could affect her speech (thanks to Mama Bear - Sandi on my jaw distraction group for making me aware that this could be a problem) so he told me they can do it where they leave a "bumper" behind so kids can still close off the roof of their mouth for speaking.  That made me feel comfortable.  Then Dr. Gordon came in to discuss his part and get consent, but as soon as he looked at Faith he said he didn't think she needs the chin advancement.  He said her growth from the distraction looked great and that he would just remove the RED device for them to do her tonsillectomy and depending on whether the bone was hard enough he might leave it off and we would be completely done!  That was such a big change of plans!  I didn't want to get my hopes up though cause it was still just a possibility and not definite.

So then it was time to take her back to the OR.  We have been giving her Versed (sp?) the past couple surgeries and it really calms her down a lot.  It is an amnesiac, so they actually relax and forget going into surgery.  I got to start the anesthia again - connecting it to her trach and then waiting for her to go under and give her a final kiss.  After that I checked into the waiting room, gave them my cell phone number and went to get some food.  I came back and called my parents and then they were calling me back already for an update.  I figured Dr. Willging was done with the tonsillectomy but Dr. Gordon walked in instead.  He said he took the RED device off for them to do her tonsillectomy and he looked at her jaw to see how soft or solid her bone was.  He said it was still pretty soft so we could either wire her jaw shut or put the RED device back on for another week.  I opted for keeping RED device on.  Then Dr. Willging joined us and said her tonsillectomy and adnoidectomy went smoothly and that he only shaved her tonsils instead of removing them enitrely because he didn't want to get close to the area where Dr. Gordon made his jaw cuts.  So that meant she would probably heal faster and a little less pain and less chance of bleeding.  He said what Dr. Gordon had done with her jaw was really great and it was easy for him to get into the back of her mouth to do his work.  That is SUCH a huge statement for a kid who was born with no room to even breathe!!

So then Dr. Gordon went back to put the RED device back on and a few minutes later I was called back to see her.   She looked much more peaceful coming out of this surgery than her last one.  We spent the night in the hospital and other than her needing frequent suctioning, everything was pretty straightforward.  I talked with the ENT the next moring about her being decannulated in the future and he explained their process to me (slightly different than what I've heard from other families).  After she has had time to completely heal from surgery (1-2 months) we would bring her in for a 48 hour observation while her trach is capped and then if that goes well they schedule a decanulation trial where we come in for a night and they take her trach out and see how she does overnight.  And if that goes well then it's done - she just goes home without a trach!  How crazy would that be?  As crazy awesome as it would be, we can't rush into it.  I'm pretty confident we can get her capped this summer, but I think we should take it slow from there, actually let her get sick and see how she handles a cold while capped (having a trach sometimes spoils us as we are so used to being able to suction everything out).  I know there have been other families and one in particular where they were able to decanuulate their child only to have an emergency situation happen and the child had to be retrached again.  And it's much harder emotionally to go back to a trach than it is to live with it longer. 

Well, once again I've written too much and now it's very late and I need to go to sleep!  Thank you all for reading my long winded posts.

I keep saying I will post pictures soon - hopefully tomorrow!

Robin

Updates before we go back to Cincinnati on Monday

Note:  I started this posting last weekend (Sun, May 19) and never finished it.  I'm going to go ahead and post it now without the pictures I wanted to add and start a current entry today (Sat, May 25)

The past three weeks have been intense to say the least.  We've been through a lot watching Faith's jaw change dramatically, doing her treatments twice a day, suctioning her trach over 20 times a day, sometimes every 10-15 minutes, dealing with the constant drooling, doing a nerve-racking procedure to wind back her pins and then pull the wires tight again, and most of all, missing her beautiful voice and trying to communicate with sign language.

I wont sugar-coat it, it's been really hard work.  For example her treatments don't take that long, but are fairly involved.  We start with cleaning the pin sites, brushing as least her front teeth with a toothette sponge (little sponge on a long stick for rubbing in the mouth after surgeries), applying a little bacitracin and then turning her pins 1 mm in the morning and the whole routine again at nighttime.  We've been taking turns, Fred usually does the mornings and I do the evenings which has been nice to have him share the work with.  Faith really doesn't like any of the treatment and she kinda pushes a little on my arm/hand to try to limit how close I can get to her face, but she says it doesn't hurt when we turn the pins, so we don't feel as horrible as we would if we knew we were hurting her.

But as hard as it is, it is also amazing, to see her jaw double in size, to see her breathe through her nose for the first time in her life and to see her bear everything that she has to go through with such bravery.  Yes, she did cry the morning before the surgery, and there have been tears a few other times, but I don't know an adult who could go through what she is going through with as much acceptance and grace.

Anyway, I wanted to share a few highlights from the last week or so.  Mostly Faith hasn't wanted to do a lot around other people, but slowly she's been warming up.  She had no problem going to a Rockies game last Wednesday, against the Yankees (which meant Fred and Anthony wore Yankees gear and Faith and Mom wore Rockies colors).  We were able to request handicap seating for her, which really helped with being able to suction her without feeling self-conscious and having room for extra stuff.  It was chilly but we we bundled up and it was a fun evening.

On Thursday Faith's teachers came to visit her which she really enjoyed which I think I blogged about last week.  Over the weekend we didn't do too much - I was supposed to run a 5K race, but my knee is hurting so I just ran a very slow run, for a time not worth mentioning! 

On Sunday, Fred and Anthony made me breakfast for Mother's day and we had a really nice day.  The butterflies came out of their coccoons that morning and then Lauren, Carly, Ryan, Dana, Aaron and Hallie all came over and hung out for the afternoon with us.  It was a beautiful day so we sat out back while the kids played.

This last week was busy too.  Fred tried to take Faith to the Channel 7 News Station to meet some of the reporters that Fred has become friends with over Twitter!  I say "tried" because when they got there Faith just started crying and Fred had to give up after 15 minutes and take her home. I think it's really cool that Fred has become friends with them -- he started following them on Twitter a few months ago, and went to meet them at a meet and greet they were doing at a coffee house and has been tweeting with them since then.  Fred studied broadcasting in college, so it's nice for him to make friends with people in the business! The ironic thing about him going to meet them that day at the coffee house was that he was telling them a little bit about his kids and about Faith and they just happened to air a story about Chloe that same day!  He saw it later on and tweeted them about it - Chloe and her family have become good friends to us since we got to visit her as a baby.  Faith and Chloe have roughly the same syndrome, although Chloe has never been diagnosed and could have some other things involved compared to Faith.  Chloe has also been going through exactly the same surgeries with Dr. Gordon here in Cincinnati - twice we were supposed to be here at the same time but the first time Chloe's surgery had to be delayed due to insurance coverage issues and the second time Faith's surgery was delayed because she got sick (in February).  sorry for that long tangent!!

On Thursday Anthony had his field day and Fred took Faith to go watch.  Surprisingly she seemed pretty comfortable there around all the kids at his school.  They all know her and are always happy to see her, plus she has been going with Fred to pick Anthony up after school for most of the time she's been wearing the RED device (halo) on her head.

On Friday Fred took Faith to her own school for their field day and she saw all her classmates!  They were so happy to see her and although she was a little shy, it seemed liked she had a good time seeing them too.  It worked out perfect since we are leaving on Monday to head back to Cincinnati and she won't be back until after school is out for the year.  We are hoping to throw a welcome home party for her and invite all her classmates, but I have yet to get it organized!!

I wanted to post some pictures for each of these activities but I'm too tired tonight.  I'll try to find some time soon!

Keep on Going Says Dr. Gordon

The past few days had us feeling a little worried about how things were going, but I finally called Dr. Gordon's cell phone this afternoon and he has reassured us that he is happy with the pictures I sent him on Friday and he got the x-rays from the hospital. He said her x-rays looked good and he explained why he thinks one side has less resistance than the other, but not to be worried.

 

He wants us to keep turning for another 10 days and he promised that when he goes back in to do her chin advancement that he will shape (by bending the new soft bone) her jaw into a position that will reduce the under bite.  It's really hard to see her like this, the more we distract, the greater the under bite, which causes her upper jaw and nose to actually look sunken into her face.  I just don't want her to go from having one extreme that makes her look different to the opposite extreme.  It's taking every ounce of my trust right now in Dr. Gordon!

 

He actually had me back up her pins and re-tighten the wires so we can keep turning for the next 10 days. That was tough and I felt way out of my comfort zone.  I really hope I didn't cause any damage while doing that.

Before moving pins back:

















After I screwed the pins backwards and shortened the wires:

Quick Update

Faith had a great visit from her teachers this afternoon and they brought her some cool things - 2 chrysalis (caterpillars in their cocoons) and a cup with a sunflower seed planted in it, and a t-shirt from the Deaf Hard of Hearing Track and Field day that happened today.  I'll have to take a picture of the t-shirt, because it shows a major change in the Deaf community, that BAHAs are beginning to be common enough that they included it in their drawing using different hearing aids as the letters/pictures on the shirt. 

I of course didn't think to take a picture of Faith with Mrs. Nancy Frank, Mrs. Karin Leonard or Ms. Kelly.  Guess we will have to have another visit with them next week to do that!!  Faith really enjoyed seeing them and I can tell it's a little stressful when she hears someone is going to see her for the first time, whether it's one of the neighbor kids, her teachers or when I tell her I sent a picture of her to Mrs. Frank to share with her class.  So, it's good for her to realize that no one cares that she is wearing this halo device, they still see her as Faith, their friend, student, sibling, aunt (to Carly and Hallie) and of course, daughter - our precious daughter!!

We still need to get Faith scheduled for an X-ray.  We tried to get it done on Monday, but ran into some difficulties.  Dr. Gordon (her surgeon in Cincinnati) tends to think everything is easy and had suggested we could just do the x-rays through her dentist office instead of going all the way to the Children's Hospital here which he knows isn't close to us!  But, in reality, it was very difficult.  On the phone it was all fine, they said sure, bring her in.  But when Fred got their with her, they didn't know how to deal with it.  They had all these questions about the halo, how they would take an x-ray with it on, etc.  Well, it's not like we can just take it off to take a picture and then put it back on!

So, poor Fred thought he just didn't know enough to answer their questions and he couldn't reach me on the phone (after he called me and specifically asked me to answer my phone if he called, and then I just forgot and left it on my desk and went to a meeting - not good).  Anyway, I told him later, there was nothing I could have said to help, they were just the wrong place to take her.  So, I ended up calling Children's Hospital, and explaining that we saw their craniofacial surgeon (who specializes in cleft lip/palate surgery, not jaw distractions) awhile back and he knows Dr. Gordon and agreed we could work with him if Faith needed to be seen while we are home in between her surgeries and that we needed to get x-rays done and have them emailed to Dr. Gordon.  So they said sure, they could do that for us, but I needed to have Dr. Gordon's office fax them the directions (which I already knew - he wanted two x-rays done at 72 inches away from her face - one profile and one straight on. but who cares what the mom knows, have to have an order from the doctor) Okay fine.  So, I called Dr. Gordon's office and spoke with a nurse I haven't met there yet, and she said she would get that done and fax it off.  Once Denver Children's craniofacial team gets the order, they would pass it on to radiology who would call us to schedule the appointment (oh, and they have a satellite location in Parker, which is only about 15 minutes away from us).  But, we haven't heard from them, so I guess tomorrow I need to call both places back and find out what's happening.  We really should have done the x-ray at the beginning of this week.

Sorry for my long rant about that, but it's just a typical frustration we deal with in coordinating Faith's care!  Also, I'm a little worried about whether everything is good, for two reasons. 

1. The pin turns much easier on her side where they did the scapula graft than on her better side.  It could be nothing, but I'm worrying it's because the new scapula bone isn't connected to anything and therefore we are not pulling the two bones apart, but just pulling the new bone forward without distracting it where the cut was made.
2. The wire that goes through her chin seems to be sticking out much further on the bad side while the better side of her jaw still looks the same as it did after surgery.  I can't quite figure this out since it is just one wire going from one side of her chin to the other.  Unless her chin is getting narrower, I don't know how more wire could just start sticking out when it didn't before.  Sorry I don't have any pictures of this right now, but I asked Fred to take some pictures tomorrow so I can send them to Dr. Gordon to look at.
3. Finally, this isn't something going wrong, but we are almost out of length on the screw that we are pulling her jaw forward with.  Once it's done we are supposed to started turning another set of pins on the back of the halo device which I'm not quite sure how well it will work.  So that's just a little worry that will most likely go away as soon as we have turned the new pins and know that it works.  Again, I know a picture here would help a lot!

These are the reasons why it would be so much easier if we lived close to Cincinnati or if we had stayed there for the whole time like we did when she was 2, or why I just want to get an x-ray done and emailed so maybe Dr. Gordon can tell me none of these things are issues to be worried about!!!

Okay, that's enough for tonight!  Hopefully I'll be able to post some pictures tomorrow night.  Faith's jaw is already distracted so far it's hard to believe!  I think we've already gained almost an inch in length - last time it took 4 weeks to gain 1-2 cms!    Tomorrow night we are going to a Rockies baseball game as the Yankees are in town and of course that is Fred (and Anthony's) favorite team.  So, cross your fingers that we don't get rained out!

Thanks for reading!
Robin

Day 12? Making Good Progress

I am so sorry to not post any updates in over a week!  We flew home from Cincinnati last Monday night and I went back to work Tuesday morning (while Fred became nurse and teacher at home!).

I have been wanting to do an update ever since we got home.  Faith had a MAJOR MILESTONE that night.  For those of you who saw my update on Facebook, this won't be news, but for the rest of you, I have to tell you about it!

Fred and I were saying goodnight to Faith and she started laughing about something (I don't remember what) and all of the sudden I noticed her nostrils flaring just a tiny bit as she was laughing.  I realized she was exhaling through her nose!  So I got her to do it again, but first I covered her trach completely and said breathe through your nose.  I'm not sure whether she breathed in through her nose or mouth but I had my finger just below her nose and she exhaled this big puff of air on my finger and I just was so stunned!  This is the first time in her life to be able to pass air through her nose!  And after just 5 days of turning her distraction pins!   It is so exciting to think she will suddenly be able to truly smell, what a new world that will open up to her!

I've been wanting to capture a video of it ever since, but I just haven't had time.  I did though get a short video of her playing a game of Trouble with all of us, she has been playing this game about 10 times a day and wins most of the time!!

Also, we have been receiving some really wonderful videos from Faith's class.  These have been so sweet to watch.  Faith sometimes doesn't want to look at the videos,  I think it makes her miss her friends.  But she is warming up to it and tomorrow her teachers are coming to visit!!  I will try very hard to at least get a picture of her with all of them!

Here is today's morning news from Faith's class:

We are working on scheduling an X-ray appointment for Faith this week so we can send Dr. Gordon an update and make sure everything is still progressing well.  I will try to post some pics of her progress very soon, but I'm just too tired tonight and need to go to bed.

More soon!
Robin