We were taken down for an abdominal ultrasound this afternoon. The technician took 63 pictures and went to review them with the Radiologist before letting us go. She told us that they couldn't find anything that could be causing Taylor so much pain. She also noted that ultrasound isn't the best test for kidney stones, that a CT scan is.
When the team (doctor, resident, junior resident, clinical clerk, nurse and pharmacist) came to do rounds I asked about the CT scan. There is not enough evidence at this point (based on the blood work, urine analysis and ultrasound) to indicate that Taylor may have kidney stones, so the plan is to hold off on the CT scan for now...they don't want to expose her to the radiation if it isn't necessary. Fair enough.
Taylor is still completely refusing food and drink, so the decision was made to put in an NG (nasogastric) tube which goes in through the nose, down the esophagus and into the stomach. This was very traumatic, more so for Taylor obviously, but not fun for Mommy to watch. To say Taylor screamed her head off through it is an understatement. Poor thing. One nurse was pushing the tubing in while the other held her down. Mom was here with me and I think she was holding Taylor too. As the nurse pushed more and more tubing in her nose, it started to come out of her mouth {O.M.G.}, so she had to pull it back out and start again. Thankfully the second attempt made it down her throat and into her stomach. They cut out a cute heart sticker on her face to tape the tube down, but she was feeling less than impressed with the whole thing and has been pretty unsettled ever since it went in. Mom and I managed to wash Taylor's hair in the bathroom sink before this nasty procedure was done, so here's a photo with the tube in, and better hair!
Here's Taylor hooked up to her first feed, which is just her ketogenic formula. They set the pump to administer the feed over 2 hours, quite slow, to see how it was tolerated. Everything went fine.
Shortly after the tube was in, Daddy & Marissa arrived for a visit. Thankfully Marissa didn't witness the torture, not sure how she would have reacted! Had a nice little visit, Marissa was pretty good. She had lots of questions for Taylor's nurse. She wasn't too sure about the tube in Taylor's nose though and didn't want to kiss her, so she blowed her a kiss goodbye when they left.Taylor's Neurologist came by this evening. I just love Dr. Bello. He is so kind and compassionate. He went to Taylor's side right away. She'd been pretty unsettled since the tube went in, but he gently stroked her head and she calmed right down and just stared into his face. It was so sweet. He noticed as well that her seizures had increased and talked about possibly introducing Clonazepam short term (72 hours to 5 days) to settle them back down to her baseline. He's also looking at weaning her down on the Sabril and starting Phenobarbitol. So he brought the Sabril dose down slightly and split it between morning and night instead of giving it all at night. He asked if I had questions but my brain is kinda fried today from no sleep that I just couldn't really think of much on the spot. He's on call all weekend, so he said he'd be by again tomorrow.
I must say, I'm not disappointed about being here. I'm upset that Taylor's not well, but I'm glad to be here so that hopefully we can figure out what is wrong. We're in the right place for that!
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