Let The Countdown Begin....

First let me come clean.......I cheated! On Tuesday after we got home from our appointment with Dr. Rahbar, I did an extra unnecessary load of laundry and I had a handful of Cheez-its!!! The laundry was a given....I knew I would fall off the wagon sooner than later. But the Cheez-its were a surprise because I have been cleansing for over a month. It only proved what I already knew...even a low key visit to Dr. Rahbar is emotionally draining for me.

I have to say the trip to Children's was very easy. No traffic, no rushing and no whining. Sloane watched Annie on the way up and Sofia the First on the way home. Mammie and I were able to talk (not always a definite on the trips) and occasionally Sloane said something so loud (bc of the earphones) that we were both startled into laughter.

I did learn something not-cleft related on Tuesday. Sloane has figured it out. She knows the deal! When we picked up mammie on our way, poppie hopped in the car to tease Sloane that he was coming not mammie. Sloane, in her ohhhh, poppie, you are silly manner said: "Poppie, you aren't coming today. You only come when we go to where Dr. Rahbar makes me sleep and I stay there. That's not today. Silly poppie" I was surprised and then not at all. Sloane knows. She connected the dots. I guess in a positive way, when her daddy and I are ready to start talking about her upcoming surgery with her, we can be more open and honest.

Dr. Rahbar didn't lay a finger on Sloane. He actually announced to her as soon as he walked into the room that he wasn't going to. It eased the vibe immediately. We reviewed how things are going and then I pulled out our questions. If you are a fellow cleft parent reading this blog, please know that Dr. Rahbar and his staff are ALWAYS interested in answering every question they can.

My hubby had written down 5 essentials.

• How many children have needed a 2nd surgery? Out of the 200 surgeries Dr. Rahbar has done, only 4 to 5 children need a 2nd surgery. When I asked the question, Dr. Rahbar asked me to remember where we came from. Sloane had a SIGNIFICANT cleft at birth. ALL the children who needed a 2nd surgery were like her. Those children with grades 1 or 2 clefts historically do not need another surgery.

• How many children have needed a 3rd surgery? Only one out of the 200 cases. This child, however, had a much deeper cleft than Sloane's and had a feeding tube as well as a tracheotomy at birth. Her cleft has been closed in a series of 3 operations because it was so deep.

• Does he think this will be Sloane's last surgery? Yes, he does. He is hopeful.

• In regards to making her airway more narrow when he stitches up her cleft more on May 5th,
• will it naturally widen as she grows
• will she a noisier as she breathes
• will it effect her athletic activities as she grows? Sloane's airway will grow as she grows. So any issues we have with her airway after surgery will naturally lessen as she grows and gets bigger and older. She will most likely be a noisier because her airway is more narrow and the air has a smaller canal to travel than the average 3+ child. As for Sloane's marathon career, it is possible. None of the 200 cleft surgical children that Dr. Rahbar has operated on have grown enough to have factual statistics on their endurance into teenage years or adulthood  Sloane's lungs have been and are being compromised from her aspirations daily, but the thought process is that the damage hasn't happened for long enough seeing as though she is only 3 1/2. Dr. Rahbar has closed clefts on 18 and 19 year olds, who have suffered from years of pneumonia because their clefts were not diagnosed, but none of the infants, toddlers or children patients have grown old enough to have data on athletic endurance.

• Will the protocol for this 2nd surgery be the same as the first? Yes, it will be. Sloane will spend her first night post-op in ICU and her 2nd night in a regular room recuperating before we head home.

This last topic wasn't on the list, but the conversation did naturally head into the direction of whether or not to thicken Sloane's liquid a teeny tiny bit until surgery to decrease her aspirations and keep her more healthy than not until May 5th. We haven't talked about this yet. It is on my back burner for the next few days. I think it is a conversation for the weekend after all the dust has settled from our week.

The countdown has begun.....29 days from today  we will all be sitting on a beach in Turks and Caicos. So exciting for so many reasons!!  and then 59 days from today we will all be past cleft surgery number 2!!