Clinic Day

Today was a clinic day for Lucy. Every three months, we drive to Sacramento to visit our CF team that helps keep Lucy healthy. Finally, after 6 rectal prolapses, and months of discussing it but never acting upon it, the team referred Lucy to a pediatric GI (gastroenterologist) doctor, who specializes in intestinal issues relating to Cystic Fibrosis. They were adamant that we get in to see a GI doctor as soon as possible to get Lucy's tummy evaluated. I take Lucy in tomorrow morning at 9 am to see Dr. Ashis Barad, M.D. with the Sutter Medical Group, where we can hopefully get to the "bottom" of these butt issues!

So, on an other note, I am a little bit peeved, actually A LOT peeved with Dr. Grumpy. He miscalculated the enzyme dosing for the Zenpep!! Yeah, it's no wonder Lucy has not been absorbing anything in the last month, generic or not! He prescribed a dosing of 3 pills with meals and 2 pills with snacks, but what she really needs to be taking is 5 with meals and 3-4 with snacks! What a huge difference (a difference of 10,000 units of lipase). I was fuming today after Lucy's wonderful dietitian informed me of this, and immediately upped the dose that I give her. I am anticipating less poop and less frequent complaints of tummy aches, no thanks to Dr. Grumpy!

The best news that I received today at clinic was the what the scale read when Lucy stood on it! Lucy, despite the last month's dramatics with the generic enzymes and apparent miscalculated dosing, has gained two pounds AND one inch in the last 3 months. I couldn't believe it! I went in to today's clinic visit really expecting the worst when it came to weight gain/loss. Who knew that even with malabsorbed pooping up to 10 times a day, there is still a chance for weight gain! It was the best news, enough to almost counteract my anger towards Dr. Grumpy.

There was absolutely no issues with her breathing or lungs at this visit. She hasn't even had any signs of allergies or asthma like last year at this same time. No wheezing, no rattling, no sputum, and her oxygen saturation was at 97. The RN did a throat culture to be sent to the lab today, and the results should be in by next week. I am fairly confident that the Pseudomonas Aeruginosa that found shelter in Lucy's lungs has been "put to sleep" by the inhaled antibiotic Tobi, although she still has one more 'on cycle' of the stuff. Only time will tell.

Stay tuned for an update from Lucy's GI appointment tomorrow morning. There may be a "clean out" in her near future to help battle the constipation. You just gotta love all the CF poop talk! Thanks for reading about all the nasty details. :P