Tuesday, May 22, 2007

Back to the Dr's ... again

We had to visit the surgeon's office again today because of granulation tissue that has developed around the tube site. It's just extra skin cells that grow when they shouldn't. If ignored, it can cause problems with the tube and leaking, etc. We've been putting a topical steroid on but it doesn't seem to be helping, so today Debbie put silver nitrate on to try to burn it off. Strangely, Claira didn't complain. She does however keep a sharp eye on Debbie (and any other person that comes near her wearing a white coat).

She's only gained 2.5 ounces this week. A little disappointing, but since we can't really increase her calories any further we'll just have to take it as it comes.

Thursday, May 17, 2007

Olive Oil ... the Magic Ingredient

She gained 11 ounces in 7 days!!!!! Adding olive oil to her diet seems to have made all the difference. She has fluff! There's almost a roll or two on her thighs! She broke the 13 lb barrier and now weighs an amazing 13 lbs and 5 ozs. We are all excited and she seems to be much happier and stronger. Thank you again for your prayers.

Thursday, May 10, 2007


Okay ... I give up! She lost weight again this week! Excuse me, but I thought we resolved this little problem!
Back in February when Claira was in the hospital with pneumonia Dr. Ranne's staff increased her calories to 30 per ounce. After a couple of days of losing weight Dr. Barton suggested that it might be a sort of paradox where a person's digestive system can actually burn calories while trying to digest something so rich. So we moved her back down to 27 calories per ounce. I mentioned this to Dr. Ranne's nurse practitioner yesterday and she said that wasn't necessarily true. She had us start giving her 2 ML of olive oil 3 times a day. Olive oil is 8 calories per ML so that would add an additional 48 calories per day without adding protein for her to work to digest.
Another issue Claira is still facing is a damaged aorta. Whenever the surgeon started Claira on the heart/lung bypass machine they attached canulas to her aorta and pulmonary artery (pink and purple). When these are removed they stitch the holes where the canulas were and generally have no problems. Claira's aorta (artery that delivers blood to the body) developed scar tissue which has sort of narrowed the passage. The cardiologist said it wasn't severe enough to fix now, but if it doesn't get better he will have to go in using a cathatyr and "balloon" it back open. This doesn't happen very often and even when it does it rarely needs repaired.
Today I called his office to see if this new issue was contributing to her weight loss. He said no, but that we should come in earlier than planned to see how she's doing just in case.

Thursday, May 3, 2007

We have lift off!

At least it feels that way! We got the "all clear" from her pediatrician and surgeon to start feeding anything and everything we can get down her (within reason of course). And as you can see we've wasted no time! Green beans and rice cereal were on the menu today with a swallow of milk ... and I do mean a swallow. Interestingly she didn't like the green beans until I added the rice. Obviously it's a texture thing with this girl. We'll continue the feeding schedule through the tube and everything else is just bonus. She weighed in at a whopping 12 lbs and 12 ozs yesterday.
And if this news isn't exciting enough ... she rolled over from her tummy to her back yesterday! Yes ... I cried.

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Thank you David and Gina Brim for helping to express our gratitude for an amazing show of compassion and generosity.