A Day in the Life

Our days have fallen into a type of regular rhythm. There are certain things that are very predictable, and that is somehow rather comforting. I have a feeling that when this is all behind us, I will want to remember what our days were like.

This is my best attempt to capture a typical day:

4:00 am: The nurse comes in to draw Aaron's blood for his daily counts. Aaron doesn't move a muscle (the nurses have been known to reassure each other that he isn't dead). If Mike is lucky, he sleeps through it too.

(Related side note: In general, Mike is on hospital duty at night while I am there during the day. We've found that this works best so that I can get the kids ready in the morning, and Mike can work from the hospital. On the weekends, we sometimes switch.)

8:00 am: Aaron is likely still asleep. The tech comes in to get Aaron's vitals and weight--usually quietly and gently, occasionally loudly and rudely.

8:30 am: Aaron wakes up. He orders breakfast and plays a game on the iPad while he waits for his food to arrive. Sometimes he can't wait and eats a bowl of cereal instead. He also does his first mouth care of the day.

(Related side note: Aaron has to swish a Biotene rinse and then suck on a Troge lozenge four times every day. It's like the laundry: as soon as he finishes one, there's another one to do. He doesn't like the taste of it, and it also takes forever to do because the Troge has to slowly dissolve and then he's not allowed to eat or drink anything for thirty minutes. To keep track of all of his responsibilities, we draw a pyramid of check boxes every day: 1 shower, 2x brushing teeth, 3x out of bed, and 4x doing mouth care. The next morning, we erase them all and start over.)

9:00 am: The BMT team comes in with the daily report. They usually say something like, "Well, things are pretty boring. But we like boring." If it's Dr. Harris, he'll make some crack at BYU. If it's Dr. Boyer, he'll want to play with Aaron's Legos. Sometimes, Aaron's blood counts have dropped enough to require a blood or platelet transfusion. They often talk to us about adjusting doses of various things (lately it's been all about his tacrolimus level, which is the immunosuppressive drug he's taking to avoid rejection). We had some good news on Monday when Aaron's white blood count bumped up from 0.1 to 0.2. They said that's usually the first indication that engraftment is getting close.

9:15 am: The nurse starts the tacro through Aaron's line. It takes two hours to complete.

9:30 am: I arrive at the hospital after dropping off the other boys at school. Mike and I exchange pleasantries and bring each other up to speed for the day. If the BMT team has already left, I get the report from Mike. I meet our nurse for the day (if we're lucky, we get Kathy--our favorite). At this point, I know most of the nurses--if not by name, at least by face.

10:00 am: I give Aaron the 5-minute warning for the iPad or Nintendo and maybe force him to do his mouth care if he hasn't already.  If it is Wednesday, he plays hospital bingo.

10:05 am: We work on Language Arts. We're using the Good and the Beautiful curriculum, and so far, I really like it. It usually takes him about 30-40 minutes to finish. If Mike happens to be with him, then they work on math instead.

10:45 am: If I'm not fast enough, Aaron is back on the iPad. Managing screen time is a beast. I always knew there was a reason why we don't have a video game system and why we also have very strict rules about the amount of screen time per week. But it's one of those things we just have to let slide for right now. It's an escape for Aaron, and frankly, I'm glad he has one.

11:30 am: The physical therapist arrives for a half hour of exercises. When we first arrived at the hospital, Aaron hated physical therapy. His easy going nature turned sullen, and he dramatically did the exercises with a scowl on his face before flopping onto the bed and telling me how much he hated PT. But after a few chats (and, I'm not ashamed to admit, a bribe), he changed his attitude around, and now he cheerfully participates. If it's a day when the physical therapist doesn't come, then he does his own exercises (usually pedaling on a little pedaler) while watching a show.

12:00 pm: I ask Aaron if he's ready for lunch. He says he's not hungry. Sometimes he eats a package of candy to appease me (we're all about the calories these days in any form). The nurse brings in his anti-nausea medication (he used to be on three different anti-nausea meds, given two hours apart; now he only takes Zofran every six hours). He does his mouth care again.

12:30 pm: Aaron gets a dose of cefepime (a prophylactic anti-bacterial medication) through his IV. Once that one is done, and if he promises to drink plenty of fluids, the nurse usually unhooks him from the IV pole for the rest of the afternoon.

1:00 pm: Aaron reads for twenty minutes (usually under protest). Or he starts a Lego project (his preferred activity). We have a lot of Lego creations decorating the room now.

2:00 pm: Sometimes art therapy or music therapy or the child life specialist stops by. Although this is a highlight for many kids at Primary's, it isn't for Aaron. He usually would prefer not to do anything with them, but when he does, he likes it.

2:30 pm: He finally eats lunch (sometimes just in the form of more unhealthy snacks).

3:00 pm: More screens; I knit. If the nurse comes in, I chat with her (or him). I haven't disliked any of the nurses, and I've loved almost all of them. To date, one of my favorite stories was about when one of the nurses had her car stolen, and when it was found a few days later, the only thing that had been stolen out of it was a bag that contained several boxes of peppermint Joe Joe's from Trader Joe's. She was furious.

3:30 pm: If it's Tuesday, Aaron plays hospital trivia. It's a favorite of his, and he has yet to lose to the contestant.

4:00 pm: If we're lucky, we get a visitor (or two). We've had friends from school, people from our neighborhood, cousins, aunts and uncles, and grandparents, This is the best way to pass the time. Aaron is always up for a game or two.

6:00 pm: Aaron is back on screens. I'm knitting again. He does his mouth care again. Are you catching the pattern here?

7:00 pm: The nurses change shifts. Mike and I change shifts too. Sometimes Aaron gets another visitor.

8:00 pm: Aaron eats dinner; he takes a shower; he does his mouth care one last time. The sheets on his bed get changed. He climbs into his nice, clean bed all nice and clean himself. He watches a few episodes of Studio C (one of the few things he actually likes to watch in the hospital).

9:00 pm: The nurse starts his second dose of tacrolimus. He usually falls asleep before it is through running.

12:00 am: The tech comes in to get his last set of vitals.

And then we start it all over again.