New hearing aids

 Cicily just upgraded to the latest hearing aid model - the Baha 5.  Can you tell she likes it!?!  In the previous post we had the pic of her holding my phone up to her hearing aid to listen to music.  With the Baha 5 she can stream it straight into her hearing aid!!!  It's bluetooth compatible and I have an app to control it on my phone.  She's been LOVING music and now she can listen to it with great sound quality anytime!  I even turned on some kids hymns while she was in church on Sunday and she got a good laugh out of it.

There's also a microphone feature.  I can push a link on my phone and speak into it and it streams straight to her hearing aids.  Cicily and her sisters have been playing around with this one!  Maya or Sophie will go into another room and say a secret word into the phone and then come back in and ask Cicily what the secret word is.  At church I stood outside her class and talked to her.  Lots of fun times being had with these new hearing aids!

trach ties

I'm always on the lookout for better medical equipment for Cicily.  We've been using these trach ties for about a year and love them!!!  They're from the same great company Neotech that makes her little suckers for tip suctioning. 
You can order samples to make sure you have the right size and to see if they work for you.  The company is very nice and great to work with.  We like them because they are comfortable, secure, reusable, quick-drying, cute and they never smell bad.  We use each strap for a total of about 6 weeks with changing and washing in between.
Downside is we have to order them separately from her regular monthly medical supply order.  But they're worth it!

Basically a vegan

About 2 years ago Cis started throwing up after she had eaten, usually only when she was sick.  I experimented with her food a little and found she seemed better without meat so we stopped giving her meat.  She did better for quite a while and then started throwing up again.  We went to her g-tube dr. to rule out that issue and then to her GI dr.  She ran a bunch of food allergy tests and they all came back normal (shocker!).  But she said she could still have a sensitivity to milk.  So we tried going sans-milk and no more throwing up!  Apparently her body can't digest animal products anymore. 
So for the past 6 months or more Cicily has been eating a vegan diet.  She gets her usual mixed grains, veggies, fruit, flaxseed, oil, and salt.  But now she also gets almonds and beans in place of meat and milk.  I do toss in an egg from her own chickens now and again and she seems to digest that alright.
Now not only is Cicily a healthy eater, she's an animal and environmentally friendly eater as well.   

Anyone need a little suction?

Cicily has been very interested in playing with her suction machine lately. She started out suctioning her doll that has a trach. Then she moved on to suctioning her dog Lucy. Now she likes suctioning Daddy, Maya or whoever will let her! She also likes to hold on to the tubing and help us when we're suctioning her. I remember when she was a baby hoping that she'd never have a trach long enough to suction herself. But honestly now I think it's really cute. I love that her life is full of things most people never have a chance to learn about and that she can make pretty much anything a fun game.

My Nurse

This is my very own nurse Kelly. She comes to play with me everyday except for Wednsdays and Saturdays. She also takes my temperature and listens to me breathe. I love playing with Kelly everyday, I wasn't ever nervous around her like I am some new people. I like that she wears glasses like me! Kelly is learning all about me and my little extras, today she even changed my trachy. Hopefully she can go to school with me in October to keep me safe. Thanks for being in my life Kelly!

Glasses Girl!

I just want Cicily to be normal

"NO! I just want Cicily to be normal." That's what Maya said when I told her that Cicily was going to get to wear glasses. I was quite surprised at these strong feelings. First of all, I hate using the word "normal". Second, glasses are pretty common! Third, trach, hearing aids, eating through a tube - not exactly "NORMAL"!
So Maya and I had a discussion on how lots of people wear glasses and it helps them see and Cicily is really excited about wearing glasses. (She actually is, we tried them on at the store and she was loving it! Though it may have been all the helpful people surrounding and oogling her more than the glasses.) It sort of seemed by what Maya was saying that she just likes Cicily the way she is and worried glasses would change her Cicily-ness or something. But, by the end of the conversation Maya was saying she wanted glasses too. I told her maybe Cis could share.
Tune in in a few weeks to see a picture of Cicily sporting glasses in all her normalness.

Cicily's 1st ambulance ride

I guess to live 2 1/2 years with a trach and never have an ambulance ride or trip to the ER is pretty good luck. So, it's a bit of a surprise that Cicily's first ride in an ambulance to the ER came 1 month after she was decannulated.
Short story: Cicily coughed up too much junk and couldn't swallow or spit it all out, and it was blocking her airway. She wasn't getting enough air, and Chris called 911. Ride in an ambulance and 2 day stay in the hospital.
Long story: Cicily has been sick on and off (mostly on) since a few weeks pre-decannulation. She's done amazingly well during the day at coughing and swallowing her minimal secretions. However, at night or in the mornings, she coughs up lots of thick crap and can't do anything with it. (We're not sure how much this trouble swallowing has to do with her brain issues and how much is related to not eating. Unfortunately, it's probably a combination.) So last Wed night she'd been sleeping and coughing, but doing fine. Then I went in to change her diaper right before I went to bed. As soon as I put her flat on the floor and got her diaper off, she coughed and started fighting to breathe. Chris and I took turns suctioning her mouth with a Yankeur, giving her back blows (infant Heimlich), providing supplemental oxygen, taking her outside (sometimes the change calms her), and singing comforting songs. Usually these tricks work, and Cis calms down and starts to breathe normally. Tonight though she kept getting more and more scared and breathing less and less. After a few minutes (who really knows how long time passes as you watch your child turn various shades of white, purple, and blue) Chris called 911.
The fire truck arrived first. They proceeded to give her an O2 mask, ask lots of questions, hook her up to a pulse ox, and take her blood pressure. I asked about performing an emergency tracheostomy (I thought perhaps her tracheal granuloma had regrown and blocked her trachea). When the captain looked at me like I was insane, I told them to get us to the hospital immediately. (I hope I wasn't too rude, that's another thing you're not too concerned about as you watch your baby's color change.) They were concerned about getting a good blood pressure reading, but then the ambulance came and we quickly got on the gurney and headed for the hospital. In the ambulance they gave her oxygen and an albuterol treatment and that seemed to help some. In the ER the nurse (who was VERY good, by the way), suctioned Cicily's mouth with a 14 french catheter and got a TON of junk out of her throat. Then the RT set up a cool mist and oxygen mask, then gave her a steroid breathing treatment. After that she finally was with it enough to pull off her mask (she hates them). A few minutes later she was pulling away the tube I was holding up to her mouth and giving it to her Grandma Sue to use. What child wakes up in the ER after nearly dying and starts playing around and laughing with her grandma?? That would be our Cicily.
So then she spent the night in the PICU and the next day and night too. It was all very uneventful. We did get a full lesson from the RT in how to deep suction orally and they gave us a supply of 14 french catheters to take home. Our tiny 8 french catheters would be worthless in these situations. We now have an "emergency box" that we keep by her bed with anything we may need for future episodes.
A tip for parents with kids with trachs: I know there are tons of things that can happen to our kids and if we let ourselves, we could worry to the point of being incapacitated. But, we never thought we'd need to deep suction after decannulation and apparently nobody else did either. If I could do it again though, I'd definitely have someone teach us the technique and have larger catheters at home before Cicily came home without a trach. Ah the things we learn the hard way!

Decannulation Party

An event 2 1/2 years in the making! We had Cicily's decannulation party a couple weeks ago. The two main events on the agenda were Cicily wearing a turtle neck and being completely submerged under water for the first time. She actually got to do both at the same time as her swimming suit was a turtle neck! We invited all our family and a couple friends to celebrate with us. Cicily really liked having her face in the water. She'd sit in her tube and dunk her face in every now and again.
I couldn't help but swim in the pool and cry as I thought of last summer swimming with Cicily with hardware protruding from her chin and all the incredible things she's endured to be able to swim and put her head in the water. It was a joyous day!!!

Cis in her decannulation party swimsuit with her Grandma Sue

Trach Free

A playful Cis - a few hours post decannulation

Wow, I've been thinking about writing this post for 2 years! Cicily was decannulated (trach out) yesterday May 2nd. A good day!!! She was in the PICU Friday night with her trach capped (we'd also capped at home for a few days during the day). Saturday morning Dr. Mancuso came into her room and I (Mom) got to do the honors of pulling out her trach for the last time. It was glorious to not have to put a new trach back in and strangle her while I tightened the tie. Cicily didn't even flinch or anything as she went from using her trach to breathing entirely out of her nose and mouth. She was watching all the medical personnel in her room like a hawk, making sure they weren't about to pounce on her I think. The rest of the day Cis was happy, especially when we'd ask where her trach is and she'd reach up to put her finger in her trach tie and it wasn't there! She's made the transition much better than I thought she would. The first 5 or so times she coughed she'd cry a bit, but then she got used to it. I expected to have a few days of her being out of sorts with her brand new breathing pattern, so she's pleasantly surprised me. The trach stoma (opening into her neck where the trach went) was actually mostly closed up after only 2 hours of the trach being out. Dr. Mancuso expected it would close quickly because her trach size has always been so small (3.0 neo) and she just had surgery done on it a month ago.

Last night before I left the hospital and let Chris take the night shift, Cicily was breathing so rattly and I wanted to suction her so bad! It was a weird feeling to hear her needing to cough or be suctioned and not be able to do anything about it. She had a great night though and didn't have any major oxygen desaturations. She does still cough and cry when she sleeps, but that's the only time the change seems to bother her.

Right now I'm listening to her voice as she cries herself to sleep - what a glorious sound! Yesterday she was laying on me trying to take a nap in the hospital and had been crying. As she settled in to sleep, she started making those sobbing hiccupy noises like, "huhuhu " and I could hear them!!! And then she started making sleep-talk sounds as she drifted off to sleep and I layed there and cried happy tears.

For those who are concerned about the aesthetics of Cicily's neck, sometime in the next few years Dr. Mancuso will revise her trach scar to leave a nice neat horizontal line on her neck that can barely be seen.

Mom untying Cicily's trach tie for the last time. Cis was still in her jammies for the big event.

And it's out!!! Look at that bare neck! It's so kissable.

The only picture we have of her trach stoma. It closed so quickly! A thorough, unobstructed neck washing for the first time.

Outlined path to living trach-free

Problem #1. A jaw that is too small
Fix - 3 month jaw distraction surgery

2. A granuloma grows in the trachea
Fix - surgery to excise the granuloma

3. Granuloma surgery is cancelled numerous times
Fix -reschedule and be patient

4. Infection inhibits granuloma surgery from being completed
Fix - reschedule, wait, antibiotics like crazy

5. A hole develops in trachea from granuloma surgery
Fix - wait 10-14 days for hole to heal

*new 6. Contracts pneumonia 10 days post-op
Fix - hospital stay with IV antibiotics, home antibiotics for 2 weeks and then cap again
Seriously, now it just feels like a comedy of errors or something like that! I am feeling more patient now though.

So Cicily's tracheal scar tissue removal surgery went well. Dr. Mancuso excised all the granuloma and stitched her little neck back up. Then she went to the PICU and her trach was capped for 24 hours. During the 24 hours of capping she was breathing EXCELLENTLY!!! Her oxygen saturations were completely normal while she was sleeping, eating, playing, everything.

There was a minor snag in the plan however. There is a leak in Cicily's trachea from surgery. When her trach was capped and there was more pressure to get air from her lungs to her nose/mouth, the air would leak out of the hole in her trachea and fill up her cheeks. She looked like a swollen balloon! So we took off the cap, swelling went down and Cicily came home from the hospital. Now we have to wait 10-14 days to re-cap and make sure she doesn't become a balloon again, and then we can pull the trach.

Mom's note: I'm very excited about Cicily breathing so well with her trach plugged. It's more than I expected from her at 2 years old. I can't describe the thrilling feeling knowing she could start to cry loudly, talk better, splash in the bathtub, not have to cough all the time. . . .
I'm also freaked out about not being able to suction the stuff she coughs up, hearing her breath differently, and other things. I don't know how to describe what a mixture of emotions it is.
When Cicily was in the hospital with her trach plugged, we made plans Tuesday night to pull out her trach Wed morning. Chris stayed with her Tues night and I went home to sleep. I'm in bed, almost out when the phone rings and Chris tells me it's not going to happen Wed. morning. I was tired, angry, sad. We have a plan in place now for decannulation and I feel good about it. I do feel like it will happen soon most of the time. Sometimes though, I feel like there have been so many curve-balls thrown that I don't know what to expect next. I try to focus on being grateful that her jaw distraction went so well and that she is capable of breathing without her trach now.

Sporting Orthotics (not braces)

Cicily is finally (after waiting 2 months for insurance) wearing orthotics on her legs to help her stability. They are technically AFOs, ankle foot orthotics. Maya may correct you as she did her aunt if you try to call them braces. Are you thinking what I think everyday when I put them on, "how much more gear can you put on a little body??" The plus side - she does get to wear expensive skater shoes that I'm sure someone thinks are cool.

Cicily is not a fan of the AFOs. She hasn't learned how to maneuver and crawl in them yet, so they actually limit her mobility at this point. I'm sure she'll get it sometime, I just hope it's soon! They do really help her gait though when we hold her hands and she walks. They also help her legs stay at a better angle when she stands at the couch and make her more stable.

Don't worry, the walking equipment plans aren't over yet. In addition to AFOs she may also get to sport a spandex compression suit to help her stability, and not just an old-lady walker, but a super walker called a gait trainer! Of course none of it sounds like a great time to me, but if it is a step in her gaining the ability to walk, I'm for it. Hell, if it'd help, I'd put her in a bubble of pickle juice all day!!!

Going Bilateral

Cicily got her new BAHA last week!!! She's now the proud wearer of two hearing aids on her headband- one on each side. We've been working on getting this additional BAHA since last May, so we're very excited!
Theoretically this gives her a higher hearing threshold and some directional hearing. All I know is now she can hear me when I'm suctioning her trach and when I whisper to her at church. In fact, Cicily hears better than I do now! At her hearing test this past Tuesday she heard a very low tone that I didn't even hear. (So, good that Cis hears SO well, and kinda bad that I hear less than my girl with a hearing loss!) :)

A little trach humor

I put the Passy-Muir valve (talking valve) on Cicily's trach today and as always, she started to babble and make tons of loud noises that we're not too used to hearing. Maya says to me, "Mom, you're going to have to turn that thing down for church tomorrow."

laundry & scar tips

Along with all the detailed new medical knowledge I've acquired being Cicily's Mom, I've also learned some useful everyday tips I thought I'd share.

#1 Laundry Blood Tip
We've had a lot of blood on clothes around our house in the past couple months, but not a single blood stain! Here's the secret: salt. Pour it directly onto fresh blood or two day old blood and soak it in cold water, wash the clothing, and blood will be gone. We actually had a salt solution in our washing machine every day during the month of July.

#2 Scar Tip
Growing up I always put vitamin E on my scars to make them dissappear. Dr. Singh also recommended this practice and added massaging the scar to the regimen. I bought a bottle of vitamin E capsules and 3-4 times a day I poke one with a pin and massage a little into Cicily's jd scars. We'll see if it's just as magic as the salt in making things dissappear. :)

G-tube site tip - Mepilex AG

I have to share what has finally worked to get Cicily's g-tube stoma (The opening in her skin where her g-tube goes into her stomach.) to heal. We've always used gauze on and off to help the site. On to soak up all the gooiness, and off again to let it "breathe". Since she had the g-tube placed when she was 2 weeks old (Oct. 06), the stoma has had issues with granulation tissue, more granulation tissue, and her stomach lining coming out of the hole. Nothing we or the surgeon tried was working long term.

So on July 1 when the distractors were placed for her JD, Cicily's general surgeon, who initially placed the g-tube, Dr. Graziano, did a resectioning of granulation tissue on her stoma. After surgery it looked so much better! No more stomach lining popping out. It hurt Cis like crazy though for the first 2-3 weeks post op.

I also asked Dr. Graziano (another Dr. we would heartily recommend to anyone) to prescribe a new gauze to put around the g-tube site. It's called Mepilex AG, it's a foamy guaze treated with silver. I've put that on the site every day and kept it on all night and the site looks better than it ever has. There is not a trace of ooziness or blood anymore! It's so great to not have Cicily be able to pull on her g-tube and make it bleed and no more bloody pajamas (at least by the g-tube). So, spread the word to fellow g-tubers - Mepilex AG. It comes from a medical supply company and it really worked for us.
(Do you think this could score an advertising profit from the company? ;))

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)

Cicily's Shakes (food)

People seem to be very interested in Cicily's eating and it's a bit of a new hobby for me, so I'm going to explain what she eats. I've explained her g-tube and pump situation and how she was eating breastmilk until 10 months old. But, now she's over a year and should be eating normal solid food. How does she do this you wonder when she can't swallow very well? The standard answer is to give special medical formula for kids (like Pediasure). This formula consists basically of water, vegetable oil, corn syrup, milk, and added vitamins. I just couldn't imagine mixing up a shake with these ingredients and feeding it to Maya every day and feeling like she was getting adequate nutrition, and I feel the same about Cicily! So, I've gotten into mixing a very thin shake of all real food for Cicily that we can send through the tube. It's called a "blended diet" and it's sort of a movement in the g-tube community. I've joined an online group to help get ideas and trouble shoot.

So here's how we prepare Cicily's "shakes". Start with a Vita-Mix blender- an absolute must have for a blended diet. It's a commercial grade blender that's downright amazing! I cook whole grains - barley, quinoa, wheat, millet, oatmeal, etc. Then every day I toss the grains, vegetables, fruit, meat, flaxseed, olive oil, coconut oil, and water into the blender and blend for 3-5 minutes. The result is a wonderful, thin shake that we can feed to Cicily 4 times a day via g-tube! She's the healthiest 1 year old I can imagine!! No processed toddler foods like mac and cheese or sugary ice cream for this girl! She eats great foods on a daily basis like: yogurt, almonds, spinach, flax, broccoli, whole grains, blackberries, beet greens, squash, salmon, etc. My Grandma would be so proud! Sometimes I even get to pick her food fresh from our own garden. (I'm sounding a little extreme now :)) Chris and I always joke that we should start drinking our own "Cicily shakes" and that when she gets rid of the g-tube and starts eating chicken nuggets and other normal foods, she's going to get sick.

Like I said, it's a bit of a new hobby for me to see just how healthy I can make the food I pump into my baby. If anyone has suggestions/ideas of super great foods or combinations of foods- let me know!!!

Suction Machine - for trach

This is a great video of Cicily's big sister Maya (3 yrs. old) suctioning her Cabbage Patch's trach. She got this doll for her birthday and was showing it to her cousin, Alexandria, complete with the suctioning demonstration. A fairly decent respiratory therapist already!



This is the suction machine- our friend that gets packed along anywhere Cicily goes. Thank goodness for portable suction machines!! Trachs create extra "secretions" in the throat (trachea/airway) and if you have a trach, you can't just cough up those nice little secretions and spit them out or swallow them as most people do. Thus, the invention of the suction machine. We use it with a suction catheter to suction deep into the trach (when I learned how to do this at first in the hospital I felt like I was playing the game "Operation", then I found out if you touched the sides nothing would buzz and Cicily would still live - phew!) Or we use the tip you can sorta see in the picture (if you can't see, feel free to ask for a demonstration anytime!) to suction the secretions Cicily has already coughed up that are sitting at the edge of the trach.

Hearing Aid - The glorious BAHA

Cicily was born with microtia (small underdeveloped ears) and aural atresia (no ear canal openings). This gives her a conductive hearing loss. This means she can hear up to 60 decibels, which is similar to what you might hear if you plug your ears. Makes lots of sense since she just doesn't have ear openings- her ears are always plugged! :) To allow Cis to hear she has had hearing aids since she was 2 weeks old. Her hearing aid is a special rare type called a bone conduction hearing aid. It works by having a microphone that picks up sounds and then the aid vibrates the bones in her skull to stimulate her inner ear. She used to have a traditional B.C.A. that had wires and was a huge clunker on a tiny head. At 4 months old she got a BAHA (Bone Anchored Hearing Aid) and we LOVE it! It's digital so the sound quality is better and it's smaller. Sometime before Cicily is 6 she will have the BAHA implanted into her skull (possibly as early as 2 yrs old). They actually implant a screw into her skull and then put the BAHA device on to an abutment that sticks out of her head (I saw it on a plastic model head and yes, it does resemble Frankenstein's screws- only smaller! :) ) This will greatly improve the sound quality as the vibration of the sound will actually go strait to her skull instead of having to travel through her skin first. And she won't have to wear the headband that the BAHA sits on now. If you'd like more info, you can check out the BAHA site http://www.cochlearamericas.com/Products/2013.asp

Headband Mom rigged up so she could wear her BAHA and have a cute baby girl headband.

Headband without the BAHA. The plastic piece is the cradle that the BAHA snaps into. The backside of the cradle rests tightly on Cicily's head so it can vibrate the sounds to her skull bones.
BAHA sitting face up without headband. This is as it will look under her hair when it is implanted.
Backside of BAHA. You can see the post that snaps into the plastic cradle on the headband. When implanted, that post will snap into the abutment on Cis' head.
BAHA in Mom's hand to show the relative size .