Dr. Wagner came in to see us late in the afternoon today to tell us that he had gotten several emails from EB families commenting on how well Rafi was doing. Of course he knew all her numbers and the ins and outs of her progress to date, that was a given. He just wanted to drop in to see how things were going. I think he feels the need to show his face and reassure us (and all the other BMT families for that matter) that he is on top of the case. He doesn’t need to, there are a plethora of people watching over Rafi, but he does anyway. However, I really think he came to see us because earlier in the morning during rounds with the resident, the fellow, the nurses, the pharmacist and nutritionist, the attending, Dr. Orchard, told Jackie they thought there was a possibility Rafaella could be discharged within a week.
Within a week? Really? That would be amazing. Both Jackie and I just smiled. It would be so nice to be at our apartment here instead of separated every night. We could eat better. I can’t emphasize enough how fresh lettuce and spinach with chick peas, corn, black beans, broccoli, red peppers, celery, cucumbers, black olives, artichoke hearts and beets with some olive oil and balsamic vinegar is going to taste. I am going to have to eat that way for the next month once we are out of here. I am sure my cholesterol and blood pressure are at all time highs at this point. While the cafeteria here isn’t bad for hospital food, it is still hospital food. Plus, it is obvious that all our well intentioned friends who send us delicious cookies and brownies, really want to put us into the cardiac wing. I am a “cookieholic”, a cookie monster if you will, but after this I am not sure I am going to be able to eat another one for awhile.
I think within a week is a little over optimistic on their part, but I like the way they are thinking. Rafi has a lot to accomplish before discharge can happen. First and foremost, she has to be afebrile (without fever) for three days. Today was probably the first day where she didn’t have a fever for two hours. Then of course, she spikes a 103.3 fever. That’s 1.6 points lower than before, so at least we are heading in the right direction. Rafi needs to be weaned off the IV antibiotics and must be able to tolerate them through her gtube. She also needs to be weaned off the fentanyl. That’s plenty of milestones to hit for now.
Did I mention that her WBC is 1.0 and her ANC is .5?
Did I mention that her numerous wounds are looking better? It’s amazing what some white cells can do.
It was also a nice day because, for a good extended period of time, Rafi was a lot like her old self. She was chatty, she was smiling, and she wanted to play. The last time she spoke this much was about a month ago. Thanks to the speech and feeding therapist, her favorite thing is now Dum-Dum lollipops. So when I came back into the room this afternoon, after a trip to Walmart to get her the Dum-Dums, and after I put the bag of 300 away in the closet I hear, “Daddy, where are my Dum-Dums?” Now this is funny because she has only heard them called that once. It’s days like today when I wish I could have the video camera going all day.
Until tomorrow……