This will be a somewhat detailed (not comprehensive as I'm Mom, not Dr.!) description of the mandibular distraction osteogenesis that Cicily is undergoing right now. This is Cicily's first jaw distraction and she is 21 months old. The distraction is being done with the goal of moving her jaw down and out so she may be decannulated and make it easier for her to learn to swallow. Dr. Singh is the craniofacial plastic surgeon doing the distraction. The device is a Synthes internal distractor. I turn the "screws" on the device 3 times a day moving 1/3 mm per turn for a total of 1 mm per day. The device will extend a maximum of 30 mm, therefore if we need to, we will distract 30 mm by turning the screws for 30 days.
Device description (in Mom terms): The mandible was broken on either side and then 2 metal plates were screwed into position on either side of the breaks with 4 tiny (3ish mm long) metal screws. A long rod is connected to these plates that extends from her ears to her chin. All this is inside her mouth, between her gums and cheeks. Then 1 1/2 inch flexible screws hang down on the outside of her jaw on either side of her trach. These screws are what we attach the screwdriver to and turn each day.
Living through jaw distraction: The distraction device is very delicate and therefore Cicily (or anyone else- including x-ray technicians!) cannot turn them (except designated 3 turns/day), pull them, or fall on them. Dr. Singh was quite insistant that any of these things could lead to device failure and ruin the distraction. Since Cicily is a wobbly toddler, she has constant 24/7 supervision to ensure she does not twist, fall on, bump, or pull her device. I stay with Cicily all day- we play lots of song games (patty cake, monkeys, etc.), read books, and do light physical and occupational therapy playtime. I also keep watch while she is napping as her habit is to stand up in her crib until she falls asleep and then roll over on her face while she's sleeping, neither of which she should do right now. Chris and Grandma DeEtte have taken turns staying up with Cicily at night to watch for these same sleep habits, give her medicine, suction, monitor oxygen levels, and ensure her trach stays humidified.
So far the distraction process is going better than I expected. Although we are nervous the space in her device is not the 11 mm is should be now, but we will discuss that more Fri with Dr. Singh. I have also heard recently that the screws become more painful to turn at the end of distraction, which I'm glad to know but sad because I was thrilled that Cicily seemed completely unaffected when I turned the screws. This process and time in our lives would not be as calm and relatively easy as it is without our amazing family and friends who have done everything from praying, sending positive thoughts, bringing dinners, watching Maya, and expressing love and concern. Thank you all so very much.
Wednesday, July 16, 2008
Thursday, July 3, 2008
Jaw Distraction Surgery - Phase I
The surgery to place the distraction device went well. (Minus a trach mishap which ended in Cicily having to be intubated through her trach stoma for 18 hours and subsequent drugs to sedate and paralyze her.) But, overall Dr. Singh was pleased with how she was able to place the distractors. Cicily had her usual fighting angry time the first 36 hours after surgery, but is now home and sleeping peacefully in her own bed!
I want to post pictures for those who are interested and hopefully to help other families get a better idea of what distraction can be like. Friendly warning though- if you are extremely faint hearted, you may not want to look closely.
The anesthesiologist let me take Cicily to the OR this time and help her fall asleep happier. She was nervous about the "bunny gown" until I smiled at her and signed, "silly Mom" and that made her smile. I think she still sensed something was up though.
I want to post pictures for those who are interested and hopefully to help other families get a better idea of what distraction can be like. Friendly warning though- if you are extremely faint hearted, you may not want to look closely.
The anesthesiologist let me take Cicily to the OR this time and help her fall asleep happier. She was nervous about the "bunny gown" until I smiled at her and signed, "silly Mom" and that made her smile. I think she still sensed something was up though. A few hours post op.
Still intubated and paralyzed. If there's one thing I could possibly dislike more than the trach- it's the ET tube (being intubated)!
About 24 hours post op.
Finally awake and returned to the trach so she can have a good snuggle before zonking out again. Quite a bit of swelling in her face.
36 hours post op.
A good look at the distractor "screws/keychains/beard" as we fondly have been calling them. The sore on her lips is from cranking her mouth open so wide to position the plates and screws.
48 hours post op.
In the car on our way home from the hospital!!!
48 hours post op.
Home again and smiling. Can you get any more tough and pleasant than that?!
Certainly not back to her normal Cicily self, but MUCH better than yesterday!
Monday, June 30, 2008
Photo Album - 20 months
Isabel (Cis' cousin) and Cicily playing house
Lovey Sisters
Cicily with her new occupational therapist Lynette
We went to Tempe Splash Park today as part of our "fun day" before surgery for the rest of the summer. Both girls enjoyed splashing in the water!
Isn't she supposed to have a small mouth?!? :)
Wednesday, June 25, 2008
Nice People
After Cicily was born, I started to prepare myself for rude comments and stares. Right from the beginning I have been primarily very pleasantly surprised. There are so many good, kind people in this world. Having Cicily has given me a greater hope for our society. The kind acts range from the overwhelming everyday responses in the store about how beautiful my girls are, to people we know gushing over Cicily's adorable smile, to kind strangers on the online TCS group becoming like family, to friends and family giving so much time to make life a little easier for us, to Dr.s bending over backwards to improve Cicily's quality of life.
I've even found that people are more accomodating and helpful when Cis is with me! Thanks Cis, your great looks and and little extras are helping us out!
The latest unbelievably kind act began yesterday. Two of the doctors working together for Cicily's jaw distraction -craniofacial plastic surgeon and orthodontist- came up with a new idea to have a helmet of sorts custom made for Cis to wear for a few weeks to make her bite more closed after her jaw is grown. So the woman who created the baby helmets for kids with flat areas on their heads called us herself yesterday and met us in Phoenix to take Cis' measurements for a custom helmet. It's a $4000 device that she's doing for free and she's putting hours and hours of her time into it on a couple hours notice. I was so overwhelmed that I cried when I hung up the phone (mostly because it's unbelievably kind of her, but also a tiny bit because now my planned "fun" week has turned into an appointment-filled crazy week). If anyone needs a baby helmet for plagiocephaly- I highly recommend Cranial Technologies!!
There are just so many good people I meet all the time, it's so inspiring. So I just wanted to say a giant THANK YOU to all the Nice People out there in the world and especially to all of you loving, concerned people reading this.
We love you!
I've even found that people are more accomodating and helpful when Cis is with me! Thanks Cis, your great looks and and little extras are helping us out!
The latest unbelievably kind act began yesterday. Two of the doctors working together for Cicily's jaw distraction -craniofacial plastic surgeon and orthodontist- came up with a new idea to have a helmet of sorts custom made for Cis to wear for a few weeks to make her bite more closed after her jaw is grown. So the woman who created the baby helmets for kids with flat areas on their heads called us herself yesterday and met us in Phoenix to take Cis' measurements for a custom helmet. It's a $4000 device that she's doing for free and she's putting hours and hours of her time into it on a couple hours notice. I was so overwhelmed that I cried when I hung up the phone (mostly because it's unbelievably kind of her, but also a tiny bit because now my planned "fun" week has turned into an appointment-filled crazy week). If anyone needs a baby helmet for plagiocephaly- I highly recommend Cranial Technologies!!
There are just so many good people I meet all the time, it's so inspiring. So I just wanted to say a giant THANK YOU to all the Nice People out there in the world and especially to all of you loving, concerned people reading this.
We love you!
Sunday, June 22, 2008
You can hurt me...but don't mess with my sister!
We went to the pediatrician for Cicily's 18 month and Maya's 4 year check up on Friday. Cicily skated with no immunizations this time. Maya, however, needed the last few shots of her young life. So she laid down on the white paper and I sat Cicily next to her head so we could hold Maya's hands. Maya started to cry as the 3 shot series began. Then I look at Cicily, who didn't even cry at all the last time she had a needle poke, and she starts crying huge tears! It was so sad. This was Cicily's sad cry with no sound and big rolling tears, not her hurt or mad cry that's more loud with fewer tears. It was kind of cute to see Cicily so sad for Maya, but I was glad it was over soon and both girls moved on to happier thoughts!
Thursday, June 5, 2008
Photo Album - 19 months
Together with both her Grandpas. What a very lucky girl! We were taking a tour of Pueblo Grande with our special guide- Daddy.
This is Maya's dog, Aurora, that Cicily is in love with. It talks and says, "Hi Maya" and Cis thinks it's the greatest toy! She knows just where to pet it (or hit it) to make it talk and she's giving it kisses here, not trying to eat it.
Love the cute molar smile!
Sunday afternoon, us girls were putting on Maya's play makeup after church. You can't see the makeup very well, but Maya's and Cicily's lips are all pink!
Surfing Safari with Dad!!
This picture was just taken today. I put gel in Cicily's hair and it went super curly. Again, you can't really tell in this picture, but get ready to see it in real life as I think she'll go curly more often. (We're loving our garden in the background, Cicily's enjoying freshly grown squash in her shakes.)Monday, June 2, 2008
The Trach Club
I've decided there's a little club of sorts for kids with trachs and the people close to them. . .
Maya, Cicily, and I were at the library today and we happened down the same isle as a little girl about three years old. At first I noticed her shoes were the same as Maya's new shoes, and then Maya bursts out- "Mom, look she has a trach!!!" She was so giddy you'd think she just bumped into Santa Clause at the library. Then Maya turns to Cicily and says, "Look Cis that girl has a trach just like you and she's walking and everything." Cicily waved to the girl as she does to almost everyone she sees, but she wasn't quite as giddy as Maya. Sadly we were too busy being excited that she had a trach that this girl ran ran off before we could talk to her. So we continued looking for books and another girl runs past us (I know we were at the library, but yes these two girls were running- full of life- trachs and all!) and Maya shrieks, "She has a trach also!" It was such an exciting thing for us to see other little girls breathing and making noise just like our Cicily does. I realized it's the first time Maya has seen anyone with a trach other than her sister.
2nd Trach Club story: Last summer our family was swimming at a hotel pool. Cicily was bobbing in the water and splashing around as usual, but it was getting late and we got out to go back to our room. As Cis and I were drying off a lady came up to me and said, "Excuse me, would you mind if my granddaughter talked to you." I of course gear up for the same old questions about Cicily like 'what's that around her neck?' I was surprised this time though. The little girl says very animatedly, "My little brother has a trach just like her! She's very cute." I was so pleasantly surprised and excited to meet this little girl, I almost cried!
So I realize there's a special affinity for families who have a member who breathes with a tracheal tube. It's like a special club that's new and sometimes exciting to be a member of; but also one whose members rejoice when people get to leave their society.
There are some famous members of the Trach Club. Catherine Zeta-Jones had a trach for pnuemonia when she was little. You can in fact see the scar on her neck, Chris and I noted it in the movie No Reservations. Elizabeth Taylor, Laura Innes (ER), Luther Vandross, Christopher Reeve, and even Pope John Paul II also had trachs. (See http://www.tracheostomy.com/resources/more/famous/index.htm for longer list)
Maya, Cicily, and I were at the library today and we happened down the same isle as a little girl about three years old. At first I noticed her shoes were the same as Maya's new shoes, and then Maya bursts out- "Mom, look she has a trach!!!" She was so giddy you'd think she just bumped into Santa Clause at the library. Then Maya turns to Cicily and says, "Look Cis that girl has a trach just like you and she's walking and everything." Cicily waved to the girl as she does to almost everyone she sees, but she wasn't quite as giddy as Maya. Sadly we were too busy being excited that she had a trach that this girl ran ran off before we could talk to her. So we continued looking for books and another girl runs past us (I know we were at the library, but yes these two girls were running- full of life- trachs and all!) and Maya shrieks, "She has a trach also!" It was such an exciting thing for us to see other little girls breathing and making noise just like our Cicily does. I realized it's the first time Maya has seen anyone with a trach other than her sister.
2nd Trach Club story: Last summer our family was swimming at a hotel pool. Cicily was bobbing in the water and splashing around as usual, but it was getting late and we got out to go back to our room. As Cis and I were drying off a lady came up to me and said, "Excuse me, would you mind if my granddaughter talked to you." I of course gear up for the same old questions about Cicily like 'what's that around her neck?' I was surprised this time though. The little girl says very animatedly, "My little brother has a trach just like her! She's very cute." I was so pleasantly surprised and excited to meet this little girl, I almost cried!
So I realize there's a special affinity for families who have a member who breathes with a tracheal tube. It's like a special club that's new and sometimes exciting to be a member of; but also one whose members rejoice when people get to leave their society.
There are some famous members of the Trach Club. Catherine Zeta-Jones had a trach for pnuemonia when she was little. You can in fact see the scar on her neck, Chris and I noted it in the movie No Reservations. Elizabeth Taylor, Laura Innes (ER), Luther Vandross, Christopher Reeve, and even Pope John Paul II also had trachs. (See http://www.tracheostomy.com/resources/more/famous/index.htm for longer list)
Subscribe to:
Posts (Atom)