Since the last post we've been to the Doctor twice, so I'll back up to last Tuesday. The MRI results were generally good. The large hemangioma on the brain shrunk, but the one on the liver (biggest) stayed the same. (This is the opposite of what we'd seen before.) Her fibrinogen was low, however, so we had to stick around forever to get a transfusion. It had been 2weeks since the last one though, so it wasn't a HUGE deal. Still, there was discussion about increasing the newer med since we had tapered off the steroid which had been being effective. That brings us to this past Tuesday...
Fibrinogen levels were low again which was disappointing but not terribly surprising. Since quitting the steroid, we'd noticed that one of the hemangiomas had visibly grown significantly so we knew something was off. These changes meant a couple of things for us right away. First, we had to go back for another transfusion today, which from leaving the house to getting home takes half the day. Second, we have restarted the steroid. They don't seem to be concerned about side effects of continuing this for a while longer.
All of this is significant because it appears that some of the hemangiomas may be responding to the beta blocker and others not. Early on there had been discussion of another syndrome because of the initial presentation. Once the biopsy came back, however, it was diagnosed as infantile hemangiomas - a really unusual presentation but encouraging to all because of the prognosis. Now that we're seeing the different responses (or lack thereof), they believe that she may actually have BOTH. We can't really know for sure because they'd have to biopsy one from the liver, and that's not going to happen. It feels a little like we're in an episode of House...basically a little bit of trial and error.
For right now, we are praying that the steroids make a noticeable difference in her fibrinogen levels - and quickly. If it doesn't stabilize, we'll be looking at other, scarier, more involved treatment options. The new "diagnosis" in itself is pretty intense as it is.
Please be praying...
*for the steroids to be effective...or better yet, miraculous improvement across the board
*that we can take this all one day at a time - its easy to get ahead of ourselves with worry about the unknowns as well as the knowns (maternity leave ends in 7 weeks, for example)
*peace and rest so we can do all the normal new baby stuff!
On a more positive/normal note, Aida IS doing all the normal baby stuff - eating, pooping, inexplicably screaming from time to time, and being all around adorable. She has been gaining weight well and may very well pick up the pace with the steroids. :) Eating isn't always super easy because she has some tummy troubles, we think, from the meds. When her day isn't totally screwed by hospital hoo-ha, we have a decent routine, but it doesn't involve tons of sleep for me! Either way, she has some serious bouts fussiness at times. I can usually handle it when it happens at 7pm. When she's awake crying and hollering from 3-5a, it's a little tougher. :) We're learning her and getting better at calming, but it's usually a workout. Our current best friend is a small, battery operated, travel white noise machine. :) It helps a little to remember that today she should only be 4days old! Instead, today we mark 5weeks.
Thanks to all for continued prayers, support, meals, gifts, patience, etc. We appreciate it more than you know. Love to all...
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