ICU Day 7

11:25 AM: After some intense days, I just got some great news! One of our doctors just saved a bunch of money by switching to GEICO. Myla also got her NG tube taken out. That's the nasogastric tube that runs through the nose, past the esophagus, and into the stomach. This tube had been helpful in giving her medicines and especially in pumping out what seemed like gallons of the green bile she was producing. The removal of the tube should help with Myla's ability to nurse. If you are on the bored side today, stick a tube up your nose (but be careful), wrap it around your head, and then try to drink from a 1/2 empty can of Coke.

Further, preparations are underway so it's only in the dry heaves stage, but we are about to be retched from the bowels of the ICU to the 5th floor. I know, it's an icky metaphor. When you are done with the Coke experiment, you can use Lakoff and Johnson's Metaphors we Live By to figure out what I'm really saying about the organizational culture of hospital life. It's not that our time in the ICU has been a totally bad experience. It's just a different system, and it takes a little time to learn the rules of the game. For example, there is only one phone in the entire ICU for parents to use, but if you can smuggle in a pack of smokes for your nurse, she'll make sure you get phone time. It's all about knowing how the system works, just like the rest of life.

I am expecting a boring afternoon as we transition up to the 5th floor, so I'm not planning an update until early evening, let's say 8:00. However, if there is breaking news to report, then I'll break in. In the meantime, I'm hoping to catch a picture of a Myla smile. :)

6:13 PM: Today has gone really well with Melissa holding Myla in the rocking chair. At times, Melissa was deep asleep and Myla was just looking around with her wide eyes. She even flashed a short smile at Melissa, but it was over before I could swing my camera around at her. At least we're on the right track. Tonight, we'll remain in the ICU. Even though Melissa is with a great child, there is no room for her in the 5th floor inn, and we can't head for a stable because Myla is still neutropenic. In fact, her numbers dropped today meaning that her ANC is back to zero. In other words, she has no defense system yet. But, that's normal, and I think we're in good shape. I learned today that the TPN supplemental nutrition that Myla is getting through her central line is $1,000 a day. I told Raul Matthew, "That's enough to buy you a Happy Meal from now to the end of the year." His response: A shrug of the shoulders.

10:18 PM: No exciting news to report, thankfully. We do have, however, a major decision facing us. When Myla's primary doctor saw how sick Myla had become, she decided that this would be Myla's last round of chemotherapy. Of course, she didn't tell us this at the time, but now that Myla seems to have bounced back so well, she is open again to the idea of us continuing with 5th and final round of chemo. Very simply, here's the issue: A 5th round of chemo would likely improve Myla's chances of survival, but it could also kill her. What to do? We're leaning very strongly toward completing the 5th round, and here's why.

1. First, if the 5th round would increase Myla's chances for survival, then it would make sense to do it.
2. Second, this more aggressive approach seems warranted given Myla's aggressive AML. Even if Myla were to make it past the 5th round with flying colors, her chances of surviving to age 5 are only 50%. My thought is that since this disease is so aggressive, why take a passive approach to her treatment? (I know, because the treatment might kill her. And that's the dilemma).
3. Third, in order to fight the infection Myla seems to have had, she was given a medicine called GCSF, which is designed to make her body produce white blood cells faster after a round of chemo than it normally would have. In other words, it makes her ANC go up faster. This is good, but the potential downside is that it could also fan the flames of any chemo cells still in her. Put another way, if the last medince she gets in her treatment has been shown to bring leukemia back to life, then it sounds too risky to just walk away from treatment at this point. To me, that would be like placing another log on a campfire you think has gone out and then just hiking away. It just makes sense to head into a fifth round, but not without Myla getting plenty of rest in between rounds 4 & 5. In fact, her doctor is talking about taking a month off between these rounds.

That's that major decision we have to make. A relatively minor decision is what to do with Myla's central line. We need to have it taken out before we head home because it's a temporary line held in place by 2 stitches, and there is too much risk of it coming out while we are at home. So, do we have the new central line installed before or after her break? Personally, I'm leaning toward having it installed before we leave the hospital because it will keep Myla from getting poked several times during that period. Plus, without a central line, Melissa might have to give Myla shots of GCSF daily. The beauty of the central line is that it eliminates all of the poking.

10:42 PM: Melissa just reported that Myla had a messy diaper, so that's great news as it's evidence that her digestive system is starting to work again. She also ate well once she got the NG tube taken out.