This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Wednesday, October 14, 2009

Slow And Steady

Dr. Willis came in earlier and told us she looks good and is doing good. He said: "So, they told u we're not extubating her today?", and we said "yeah", and he said "Do you have any questions?", and Todd said "no", and I said "Yes".... hello, have we met?? Obviously no one warned Dr. Willis about 20-question-Melodie. ; )

So I ask him, what's the difference between yesterday and today...why was she waking up so much yesterday and not so much today? He said yesterday they were trying to wean her off the ventilator, therefore they were lowering the sedative dose, and therefore she was waking up. Except when she woke up, they weren't expecting her to become agitated thereby causing her lung vessels to constrict and for her numbers to get high (blood pressure, etc) and oxygen to get low. (which I kind of knew already)

He said that they started giving her the Sildenafil  (aka Viagra..see previous post) last night to try to stabilize the bloodflow in her pulmonary (lung) vessels. He said it can usually take 1-3 days for the drug to get in the system and begin to really work. My next question was "Okay, if the Viagra (sildenafil) helps keep her pulmonary vessels open then what happens when she's released?", and Dr. Willis says "Oh, we're going to send her home on the Sildenafil"... and I'm like... ah crap. :(  Not what I was hoping to hear, but oh well, who am I to complain?

Then I asked "So, today you're going to let her rest, let the sildenafil do it's thing, then tommorrow try to extubate (take the breathing tube out)?", and says "yes".  So, all day today Scarlett's just been sleeping and resting. Nurse Becky said that she's woken up a few times when she comes in to assess her, but she just barely opens her eyes, moves a tad, then immediately doses off to la la land again. Unlike yesterday with the "wigging out" episodes every few hours. She's much more peaceful today.

My daughter Violet has an "Elmo's World" DVD called 'Opposites'. It has 3 ten-minute shows on it: up/down, open/close, and fast/slow. In the fast/slow segment, they do a Tortoise and The Hare analogy. The tortoise says and repeats "Slow and Steady", while the hare is running running running. One of the heartmoms commented on my last blog post "Slow and Steady", and I really liked it, because it aptly describes Scarlett's recovery. Sleep well my precious little princess... all in good time. :)


  1. Dr Willis did not care for me or my opinions at first, then he started to chill a little and take some of my advice and some of it worked. I always thought he was so pecimistic and Dr Rhee was my optomist, but then they were both good. Glad all is well. I will keep you all in my thoughts and prayers.

  2. Becca has been on Viagra/Revatio/Sildenafil for 4 1/2 years. I know she is much older than your precious Scarlett, but the important thing is the med does what it needs to do. I am so grateful it is available for our children.

    *Holding you close*

    with Hope,
    ~ Chris A ~

  3. Scarlett looks so good! I am awed and grateful for the remarkable improvement in her color immediately after the repair work was done. Melodie, you are doing so great at trusting the process. I know it's not your natural response, but it will grow on you and it is perfect for Scarlett's recovery. All in Scarlett's time, slow and steady. All three crews on both ends of the week include an update on Scarlett's progress in their daily crew briefs, so the prayers and positive energy is coming her and your way 24/7 from work! We'll keep her continuous cheering section going until Scarlett comes back home and beyond.
    With Much Love,
    Susan and the whole gang