Cardiac Conference Results

Dr. Young called today with the results of the VQ Scan. Nothing unexpected; just confirmation of what was learned during the catheter procedure and angioplasty.

The measured blood flow to the left and right pulmonary arteries: 70% to the LPA and 30% to the RPA. This will serve as a baseline. Charlotte will have regular follow up echocardiograms. If the TR jet (pressure in the RPA) looks concerning, she’ll have another VQ scan as a more direct measure of the pressure. If the VQ scan confirms high pressure levels, we’ll move to another angioplasty. The idea is to stave off the next surgery for as long as possible, but to continue lowering the pulmonary pressures in the hopes of preserving the pulmonary valve (one of Charlotte’s replacement parts).

Exciting news out of this procedure and the Cardiac conference—we’re weaning Charlotte off of the Viagra! We’re thrilled to be losing a medication (she’ll be done with it in about 10 days). This one has been especially difficult because we had to serve it at 7 a.m. and 11 p.m. so one of us had to be awake. We’re down to twice a day and we’ve moved Viagra to the 9 a.m./9 p.m. slot with her other meds. We’ll be weaning her off of the Lasix next. Yipee!!

Next Cardiac follow-up should be in about 3-4 weeks.

On the feeding front: Charlotte is eating more and more every day. We don’t know if the tube was causing a problem and she’s now able to eat more comfortably or if the angioplasty is kicking in. I guess it doesn’t matter and is probably a combination of things. Keep eating, kiddo!

Charlotte is on Tube-Free Probation

Charlotte had what looks like a rash on her cheeks, her chin, all the way to her ears. I didn’t want to put the tape on her face until she saw a doctor.

Dr. Ramadan took one look at her and said:
1—The rash is typical baby stuff. She’s wiping her hands all over her face after sticking them in her mouth. The little red bumps on her face are dry skin from rubbing her face. “Just normal baby stuff.” She’s getting the rash under her chin because she’s getting chubby. “Getting chubby,” the doctor’s exact words. Hooray!

2—When I told Dr. Ramadan how well Charlotte had been eating since the tube came out, she gave me the go ahead to leave the tube out until Wednesday as a trial. Fingers crossed.

Today’s weight= 11 lbs. 10 oz.

The Tube Slithers Out

Little Charlotte’s cheeks are so ravaged by the tape we use for the NG tube. Today, she was wiggling and writhing while we pumped a feed. She basically rubbed her cheek against a cloth and the tube slithered right through the tape and out of her nose.

We just can’t bear to put the tube back in. We don’t want to make her scream and we don’t want to hurt her little cheeks any more. And she’s eating so nicely since the thing came out. We’re going to give her a night off and decide what to do tomorrow.