“Wild horses, couldn’t drag me away…”

Hi friends. We’re still in the hospital, going on almost 2 weeks! Time really does fly here. I think I said that before when Sarai was in the NICU, and it still holds true. We’ve had quite a few visitors, and are just letting the days go by. Sarai hasn’t had a spasm since Saturday afternoon!! Dr. James is very happy with that, he said she’s a “fast responder.” Starting this morning, they cut the ACTH to one shot a day, this will reduce the chance of her having any side effects. Her blood pressure has been rising a little, so they want to bring the dose down before it goes any higher. Hopefully we still won’t see any more spasms!

Sarai has been exhausted, sleeping most of the day, and still isn’t herself. She’s definitely lost some muscle tone, to be expected after almost 2 weeks in the hospital. I’m trying to stretch her and get her in a sitting position as much as possible, but it’s really hard to get her awake for more than a few minutes. They did some blood work and took a urine sample to make sure she doesn’t have any infection that could make her sleepy. There was a small indication that she had a urinary tract infection, so they did a second test to be sure the sample wasn’t contaminated. (They were going to jump right to “cathing” her, but I almost lost my mind, and then they did something less invasive. Sheesh.) Turns out, no UTI.

Dr. James told us last night they were going to do the EEG tomorrow thru Thursday to give Sarai a day on the lower dose of ACTH and see how she does, but wrote that it was to be done today. So we had to set the day-staff straight, they finally called him to confirm and it will be done tomorrow after all. (I swear, I don’t know what would go on if we weren’t here. Did I tell you about the nurse who brought the wrong medication? That’s a good one…)

Sarai had an echocardiogram yesterday. Overall, that doesn’t show anything of concern. But it did show that she has a small patent ductus arteriosus (PDA). That’s something they talked to us about in the NICU, it’s a valve that hasn’t closed on it’s own yet and is very common in premature babies. She has no complications from it and it should close on its own eventually. We will follow up with that when she’s about a year old.

We’ve had PT, OT and speech people stop today by but Sarai was too sleepy. They’re going to try and come by again in the morning. The music therapist also stopped by while she was resting. She sang her the must beautiful lullaby, I wanted to cry.

Poor baby is going to spend her very first St. Patrick’s Day hooked up for the EEG. But hopefully we’ll be out of here on Thursday after it’s done, maybe Friday since Dr. James doesn’t come until the evening to read the reports. It’s really time to go… my fangs are starting to show and the claws are coming out. This morning I almost decapitated a med student who’s been very nice to us. Quick message to him…. Sorry Dr. McViking, but I can’t help but shoot the messenger.