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.

No longer the "hated foe"

In the past I've referred to Cicily's trach as the "fondest ally and hated foe". I honestly no longer feel that way. I'm so glad she was able to have it out for 2 wonderful months. But I have to say I am honestly so happy to have it back! Now I can suction all that junk out in the morning, and not have to coax her to cough and hope she's just working it all out every day. I can hear her raspy breathing and stick a catheter straight down the tube! I think she'll end up being more healthy this winter with a trach than she would have without it. Who am I kidding, she wouldn't be here this winter without it. And that is the biggest reason I am 100% ok about the trach for now - it will keep my Cicily alive.
It's also weird, when I heard Cicily laugh for the first time hearing her voice I cried. I loved hearing her voice every time she laughed with her trach out. In fact, she was just getting really good at it and really loud with her babbling and talking too. But, the first time I heard her laugh after her trach went back in, it was like seeing an old friend again. It didn't make me sad like I thought it would, it made me smile.
I'm also relieved each time she cries really hard because now I know with her trach back, she'll calm down and breath. Without her trach she'd cry really hard and turn purple. It's such a relief. Maybe the new perspective is just all the prayers you've all been saying for Cicily and our family?? If it is, keep them coming!

And for now I want to say - Welcome back trach, you are no longer my hated foe, but my ally. Thank you for allowing my little girl to hold on to her gift of life.

THANK YOU!!!

If you're one of Cicily's wonderful doctors, nurses, therapists, RTs, MAs, surgical schedulers, audiologists, case managers, etc. then look for one of these cards in your mailbox soon!

We've wanted to send out a special thank you like this to let all the special professionals in Cicily's life know how much we appreciate all they've done for her. The plan was to wait until she was walking, decannulated, talking, and/or eating and then to send out a "thank you - see how all your hard work has paid off" card. BUT, Cicily's life isn't like that. Her life is just hard and things don't come quickly or easily for her. BUT, Cicily just keeps smiling and enjoying her life anyway and all those professionals have helped her to do that.

We thank them and we thank all of you for your concern, love, and prayers!

Special thanks to Aunt Ondria for creating the adorable card!!

The 12 day hospital stay

So after Cicily was stable, they did a chest x-ray to determine if the ET (intubation) tube was in the correct place. The x-ray showed some cloudiness in her left lung, indicating pneumonia. So Cicily was on the ventilator, intubated, and sedated for 5 full days while the pneumonia spread to the other lung and then went away. While she was intubated, she had some special visitors:

Maya could actually come visit this time as the hospital doesn't have age restrictions for visitors in the summer. Cicily has a shirt on that her cousins all signed. What a great get well card!

One of our favorite families! It'll be interesting to see if Jerome is happy or sad that Cicily has her "necklace" back.

On Tuesday July 7th (almost exactly 2 months after it was removed), Cicily had her tracheostomy re-placed. We would have liked to give Cicily a real chance to learn how to handle her secretions without a trach and without being sick. She never really was 100% healthy the whole 2 months her trach was out. However, her episodes just got too severe and her chances were running out. Now we'll have to figure out what works to thin her secretions and she'll have to have her trach capped more and figure out how to cough and breath and not get scared with it all. (Damn that lack of white matter!) It still seems that the trach will be a temporary thing in Cis' life. Chris and I are actually quite relieved that it's back. It's funny, as much fun as it was to hear Cicily's voice when she laughed, I was also happy to hear her trach laugh once again.

The day after her tracheostomy, Cicily woke up from sedation in pain and flailing wildly. She had become addicted to the drug fentanyl that had kept her sedated for the past 5 days. It's an opiate drug, like heroin. So, like a heroin addict, Cicily had to be put on a detox regimen. She was given decreasing doses of the drug methadone to get her over the addiction symptoms.

The above picture was taken the day she woke up, the only time we saw her smile for the next 4 days. It's the first time I can think of in her life when Cicily hasn't just bounced back quickly from a surgery or illness with a smile - it was disconcerting.

Maya was of course the first to get Cicily to smile again! She even got a laugh out of her. One morning we brought Cis' dog Lucy for a visit. That plus Maya won lots of smiles!

After 12 days in the hospital, Cicily was discharged. Because of the addiction and not moving for almost 2 weeks, Cicily was still unable to sit up on her own or even hold up her head. The night she came home, I ran out and bought her this chair she could lounge in and completely recover in.

Cicily has been SO happy to be home. She's been smiling almost non-stop. I think she's happy to be alive and healthy.

The Episode to end all episodes - Life and Death

On Friday July 3rd at 5 am Cicily had a couple big coughs. Chris and I woke up and Chris ran into Cis' room (I walked). Chris got her out of her bed, and she had already started gasping for breath. She was having another "episode" that we've seen so frequently in the past 2 months, with each one getting more severe. Cicily hadn't had an episode for over 2 weeks, but here it was again, so we began our standard treatment. I held Cicily on her rocking chair while Chris got her albuterol breathing treatment, oxygen, and humidifier. I held all 3 of those tubes to Cis' mouth and sang her songs to calm her while Chris suctioned her mouth and throat with a 14 french catheter.
We and Cis' doctors have theorized that she has these episodes because she's only used to coughing up junk into her throat and then out the trach it comes and with no trach as a trap door, the secretions get stuck in her throat and she gets scared and begins gasping. It's almost as much of a mental panic as it is her airway being plugged up by secretions.
After a bit of the usual treatment, it was clear Cicily was not bouncing back like normal. Chris left the room to call 911. By the time he got the phone and was back in the room, Cis had stopped breathing completely. We put her on the floor and Chris started giving her breaths with the ambu bag. I felt her chest and couldn't feel her heart beating. So after a second of both of us freaking out knowing we had to start CPR, we collected ourselves and I began chest compressions with Chris giving breaths. After about 10-20 compressions I started to feel Cis' little heart start to beat under my hands. So we stopped CPR and by this time the fire department was here. The ambulance came quickly after. They proceeded to intubate Cis and attempted to give her an IV (our carpet still bears the blood stain). Then we were off to the hospital in the ambulance. The nearest hospital to us is a heart hospital for older people. That's where Cis was taken because they had to "stabilize" her before they could transfer her to her normal hospital.

Cicily stable in the PICU at her "home hospital"

Chris and I both thought Cicily wasn't going to make it past this episode. When Chris went to ask our neighbor to stay in the house with Maya before we left in the ambulance, Chris told him he thought this was it. At one point before the CPR I put my hand on Chris' arm and said it's ok. I was very calm with the idea that if it was Cicily's time to go then she'd at least be free of her ill-functioning body and she could go chase after some ducks with her great-grandmas. I'm incredibly happy that Cicily did not want to leave us though. She amazes me at how gracefully and joyfully she accepts her calling on this earth.

After a horrible new "episode" on Friday, Cicily has been in the hospital and now has her trach back in. It's mostly due to her white matter issues, her "TCS airway issues" are perfectly fine. Discouraging, but she wants to live and we want her to keep making our family and others smile. The complete story will be written out at a later date.

A new detective in the Case of the Missing Myelin

We asked Cicily's neurologist #4 if he could provide us with a list of neurologists who specialize in white matter issues. He kindly gave us a list of 3 doctors who research white matter (myelin). One was in Salt Lake City, one in Maryland, and one in DC. We checked into all of them and what research papers they've written. We're quite excited because they all have a strong interest in white matter diseases. We decided we'd start closest to home, and see if we could get Cicily in to see the doctor in Salt Lake City.
So in July we'll be heading up to Utah. The doctor we're going to see is an MD and PhD. He uses zebra fish to study white matter. We're hoping he will get interested enough in Cicily to study her white matter, or lack therof rather.
We've decided to stay a few extra days and make a vacation out of the trip. That means two of our last three vacations have been planned for appointments with doctors. Good thing we have doctors to see, or we'd never get a vacation!

Random Photo: I gave Cis a tangelo from our tree that wasn't going to ripen. She popped it into her mouth and thought she was so funny!