The monumental screw-up part 2

Yes, I know. Slacker mommy.

So I gave you the first part of our lovely Shands/Lake Shore story a few weeks ago, and then left you hanging. Sorry about that, loyal fans. :(

So, lets catch up.

I left off at our admission to Wolfson Children's Hospital due to what looked like a contaminated blood sample drawn from Gracie's foot. Well, the next 4 days were a blur of continuous needle pokes for Gracie. It was terrible. Anytime any hospital staff would get near her, she would scream her head off, anticipating another poke. Unfortunately, her fears came true more often than not. Poor baby. As for the original positive culture from Lake Shore, our docs at Wolfson spent quite a bit of time attempting to get more information about the sample, and even the sample itself. They were told by the lab at Lake Shore that the sample was sent to Shands Gainesville for further study, but when our docs called "Big Shands", they had no idea what they were talking about. Somehow this sample had been "misplaced". At this point, our Docs at Wolfson are ready to make a formal complaint about this situation and Shands at Lake Shore sends them copies of the preliminary lab sheet which stated that the blood was drawn intravenously. Now, if you're officially confused by now, I don't blame you. But what that means is that someone lied when they submitted Gracie's blood for culture. I'm also being questioned about the capture method to make sure I know what I am talking about. I'm also officially furious. Shands at Lake Shore will be on the receiving end of this anger on the day a pull a bill from them out of my mailbox. I also plan on inviting them to pay for Gracie's stay at Wolfson's as well. We'll see how it goes and I will certainly keep everyone posted. And I'm sure it will come to no surprise to anyone that we will no longer be taking Gracie to Lake Shore if she runs a fever. We will go straight to Wolfson's from now on. Its just not worth it.

On to other topics.

Gracie continues to blossom and do well despite our minor roadbumps. We are still dealing with our mystery rash, and I am more and more convinced that it is NOT GVHD. Unfortunately, I will have to wait quite a while for confirmation of that because Gracie's biopsy (and ear tube replacement) is scheduled for March 23rd. Yuck! I had no idea it would be so long from now. When we first spoke to Dr. Joyce about this they told us to keep the next few Thursdays available for the procedure so we were thinking it would be pretty quick. I plan on calling our nurse on Monday and finding out if this is really the best we can do. So due to this, we are still on a therapeutic dose of CSA and no plans to wean off yet. Bummer.

Gracie doesn't seem to care much about the CSA issue, since she takes her meds in her formula these days. So she's just hanging out, being cute, and having fun. She's got about 15 or so words she can say, and she signs a little bit as well. We're hoping to cultivate her communication skills quite a bit in the coming months so that we can get her to express herself better and with less frustration. We're also hoping to see her start walking on her own. She's getting close, and I'm hoping it will happen soon. She is definitely a social girl, she loves to smile and wave at people and babble lots and lots. She's had a recent spike in her appetite as well. She's such a sweet baby and I am so proud of her for having such a wonderful disposition despite her circumstances in life. She really is an angel.