September 18th: More Testing, No Answers

We had a second day of testing at the hospital today. Annie had a renal sonogram and full upper abdominal sonogram. She had her routine dexa bone density scan and a routine spinal x-ray just as part of her annual testing.

Her chest x-ray from yesterday was clear. The nodules in her lungs that were reported on the last CT scan ended up being an imaging flaw from all the spinal hardware she has. So her lungs are good!

Annie's blood work from yesterday shows that her white blood count has gone up a little from last Friday when she was discharged. It's now at 18.9k. And still no one knows why. The rest of her lab values don't look too bad. She still has elevated platelets. Her hemoglobin has come up to 11 from 9 on Friday. Although that increase could just be because she's a little more dehydrated now and her blood is more concentrated.

Her sonograms today looked good showing no problems with her kidneys, liver, gall bladder, or pancreas. She does have some debris in her bladder though, so we'll probably have a UA and culture done tomorrow.

We met with Annie's hematologist today. He thinks we need to have our GI scope her again for a possible GI bleed. We've seen just a few flecks of old blood in her last vomit last night, but not much and only that one time. So if we see more, or a scope shows bleeding, we'll have to stop the injection treatments for her blood clot. However, Annie's vomiting has subsided a bit this afternoon, although she is only getting gatorade at a rate of 40cc/hr. The hematologist will continue to monitor Annie's blood clot and will do another sonogram of it in a month.

We definitely prefer to be at home with Annie, but it has been a difficult two days running around getting testing done and trying to contact doctors by phone to figure out what's going on and what still needs to happen. None of the specialists we're working with are on the same page and trying to relay messages through nurses is really hard, so that has been difficult today. We hope to form a better plan tomorrow when we see our pediatrician again and have him coordinate care among her specialists. We also have Annie's regular annual appointment with most of her specialists next week, so if we can keep her hydrated until then, that will hopefully be a chance to get everyone on the same page and make some progress in her treatment.

Today she is doing a bit better with tolerating some clear liquids, but she's having more seizures again, particularly her gelastic seizures. She had myoclonic seizures this morning for about two hours and needed Diastat. We might need to get an additional seizure medication on board when we meet with our neurologist next week. But I'm hoping Annie's seizures return to normal once we get the underlying problem resolved.