Monday, December 20, 2010

Worst Blogger Ever

...that's the title I'm bestowing on myself since I cannot get myself together to write a proper post. I've realized that I'm much more of an instant gratification type and Facebook is my friend. Most of my loved ones get info about Kate and the boys through the social media site. And since Kate is not even close to being medically fragile or even medically interesting anymore, I hesitate to write. Then again, I do like the idea of parents who are in the thick of the medical issues surrounding kids with PRS or trachs, to be able to see that there is light at the end of a very long and sometimes very dark tunnel.

It's been 2 1/2 years since Kate's decann and 18 mos since her stoma was closed. Airway wise, she is doing great. We are down to check ups every 6mos or so but at this stage, it's mainly because she still has ear tubes and probably will for a long time to come. Kids with clefts can take much much longer to grow out of needing a little assistance in the ears. Kate is halfway there. At a check up in May with Dr. Jacobs he noted that the tube in her right ear had fallen behind the ear drum and gotten lodged there. He surgically removed it and opted to let it heal rather than put another tube in. She went until October with no issues - tube in left ear, none in right. I thought maybe, maybe she was starting to grow out of it. She's extremely healthy (which never ceases to amaze me) so no sick visits and if she does have fluid in her ear, she's generally asymptomatic for a long long time. Only if a fever pops up do I have any idea things are awry.

Anyway, I digress.... this November, she developed a hacking cough. No other symptoms - no fever, no runny nose to speak of, appetite fine. The only thing that we noticed was an increase in her snoring. Her lungs sound clear and she's acting fine. We went to see Dr. Jacobs earlier this month. I'm thinking he's going to want to bronch her to check out her tonsils and adenoids. Instead he notes her nose being very congested, puts her on Nasonex once a day and says to come back in 2 months. Alrighty doc.

Cleft palate clinic this year was only notable because the team's collective opinion was that Kate could go to check ups with them every 2 years, instead of every year. I was thrilled, if only because the day is so long and the traffic is ridiculous. I don't miss the trips to CHOP every other month. At all.

Otherwise, Kate is great. She was 4 in Sept, goes to preschool 4 afternoons a week and dance 1 morning. She's loud and opinionated and definitely a force to be reckoned with. And today it is 4 years since her discharge from CHOP. She was 11 weeks old and finally home.

Sunday, July 4, 2010

Two years

That's right -- 2 years since the piece of silicone in her neck was removed. A tiny piece of equipment that kept her alive, and created more drama in 2 years than I'd seen in my 40 years.

The sense of relief didn't kick in til much much later. Shock was a more accurate description for B. and I since it wasn't where we'd thought we'd be, nor how we'd expected her decannulation to take place.

Two years ago, we expected Kate would be in the PICU recovering from the long awaited, heavily anticipated LTP (surgical reconstruction of airway with rib graft). Two years and 1 day ago, we hugged and kissed our heavily sedated daughter good bye and let her be wheeled into surgery with a doctor we trusted implicitely, whose intent it was to cut her neck open, and replace scarred tracheal tissue with part of her rib to open her airway and allow her to breathe without that tiny piece of plastic. Two years and 1 day and 1 hour ago, that same doctor came to us in the OR waiting room to tell us that our daughter's body had essentially healed itself - that the LTP he first mentioned when she was a mere 5 months old, need not take place now on her 22 month old body. Two years and 1 day ago and 22 hrs ago, we waited in the PICU for her to be wheeled into her room, with an even tinier piece of plastic in her neck (a downsized trach to prep for decannulation). Two years and 1 day and 18 hrs ago, we watched as an RT placed an even tinier piece of bright red plastic over Kate's trach and absolutely nothing out of the ordinary happened. Two years and 6 hours ago, we arrived in our daughter's room, not having any idea if she'd done ok with the cap and saw a smiley girl who looked just fine. Two years and 5 hours ago, a resident in pediatric otolaryngology removed her trach for the last time and we all held our breath to see what would happen. Two years and 4 hours ago, we exhaled and began the path toward realization that Kate was now "typical" -- with the exception that most 22 mos olds don't have an open hole in their necks.

Two years seems like yesterday.

Two years seems like a lifetime ago.

Wednesday, June 30, 2010

Just a girl

Yea, I'm not the best blogger around, but honestly -- does anyone want anything but the twice a year update. Kate is completely and utterly typical and the days of me obsessing about her medical issues are over. Things crop up occasionally -- one of her ear tubes lodged behind her ear canal and needed to be surgically removed, a speech therapist evaluated her at preschool and had A LOT to say, most of which I discounted because, let's face it CHOP said she was better than good, so I'm believing them --- but really that's it. She's a healthy (no sick visits to the doc since decannulation - NONE), developmentally fine kid.

She likes to swim, she takes ballet, she loves princesses and pink and she drives me absolutely mad some days.