Day +11: Yuck!

Hi all. Day +11 was a wild and unpleasant ride for all of us, especially Gracie and Sarah. I won't go into detail now because I'm really tired, but today Gracie scared the H-E-Double-Toothpicks out of all of us. I feel like someone punched me really hard in the stomach when I wasn't expecting it.

Before I go further, it's important that you know she recovered like a true champion, and before we left tonight, she was better than she has been in several days. I also want to recommend that you read the what Mandy (testdriver) wrote in post that is just above this one, because it (coincidentally??) explains exactly why this happened today and why Gracie's body reacted the way it did.

As background, fluid management in Gracie's body has been a big challenge since she started Chemo. She's retaining fluids, but at the same time she is dehydrated (Mandy's posting - the next one above - describes why). Her pain meds have been pretty high as well, and she needs lots of fluids to keep the narcotic levels safe, a delicate process in a baby her size.

Today, in a nutshell, it all fell apart late morning. Gracie had started benadryl as part of her ERT protocol (she had ERT today). She also had been given a bolus of her pain meds, and was already on a relatively high level of narcotics to manage pain. The combination caused her oxygen saturation to plummet suddenly (also described in the posting above). When you combine this with the discussion of "wet lungs" that we heard from the medical resident yesterday, it all scared the dickens out of us. Poor Sarah was alone with Gracie at the time, but Jim got there quickly, and Noni, Muntz, and I all arrived just after the event.

Fortunately, they were able to stabilize Gracie. They decided to stop her pain meds for most of the day, and returned to a much lower dose this evening. Great news is that this afternoon and evening she was alert and playing and having a ball for the most part. In fact, it was the best I've seen her in a week!

It just goes to show how difficult it is to know how to treat pain in someone that can't tell you "it hurts." She appeared to be in pain for days despite the level of medication she received (and I'm sure she was). After a few days, she may just have been so gorked up on pain meds that we couldn't tell if enough was enough. She still "looked like" she was in pain, and we wanted to do our best to keep her comfortable. But again, she can't say when enough is enough. It's just impossible to tell. It was pretty clear this afternoon that she will be fine at a lower dose. She will also be more alert and more active, which will aid the healing process.

More Good news: All of her cultures for which we have results are clear. She had a chest xray that also came back fine.

We've never been so scared. If there is a silver lining, it's that the event got the unit staff's attention and my family's attention, so everyone is being a bit more vigilant and thorough when examining our Gracie. And if I find that resident who spooked us with the "wet lung" talk I plan to take him over my knee and whip him until he cries and promises to be more careful with his terminology. Grrr! Tomorrow, I'm taking mommy to a spa for a massage and a facial. Very well deserved!

As always, thanks for the warm thoughts and prayers. Keep em coming. And don't forget: GROW! GROW! GROW! GROW!