Friday, June 26, 2009

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!

Wednesday, June 3, 2009

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