Today was extra special because Tommy and I switched off mid-day and I took Kaya and Laney out to lunch. The first hour was a pretty horrendous show of crying for attention and fighting with each other, but the post-food second hour was nice. Meanwhile, Maggie had a great day at the hospital, and now begins my week to try to convince our BMT team to discharge Maggie. A lot of things have to fall into place – she needs to get off diuretics (or at least on a stable regimen), she needs to prove that she doesn’t need platelets daily, she needs to have a viable plan for taking oral medications, and she needs to be on a limited number of IV meds that I can do at “home” (ie, the Ronald McDonald House). Her CMV is also still active, but I doubt that would keep her inpatient. Currently she is on 6 hours worth of IV meds, which kind of seems like a lot, considering she will have a clinic visit every day which will take a few hours as well. But she is looking quite good – she is very active, eating well, and feeling good. We went down to the Children’s outpatient clinic waiting area today and (after I obsessively disinfected everything) she walked for a while using a toddler chair.

Maggie left the hospital for a short field trip today. She had a great time. We went to Ronald McDonald House (RMH), where Maggie will live for the next two months or so.

RMH is amazing. Everyone there is extremely friendly, there is dinner cooked by the community every evening, and we have access to a private room with a kitchenette and laundry area. All are essential because Maggie can’t share those services with others.

Today was also the first day since chemo that Maggie didn’t get platelets. That’s great because the need for platelets is probably the limiting factor for discharge. Her need for platelets needs to drop to consistently every other day or better before she can leave the unit over night.

Maggie was downright bored this morning – I think our car trip off the ward yesterday made her realize how boring her room is. She is still needing daily platelets and on a bunch of IV medications, but she is doing really well and gaining more and more stamina each day. We took another wagon ride around the hospital this afternoon (car was unavailable). She really wanted to bring Elmo with her, so I stupidly let her, and she was so excited to hold him for the first 5 minutes of the ride. And then of course she threw him overboard in the dirty hospital hallway and I refused to give him back. And then she spent the next hour of the wagon ride trying to get to Elmo through a series of crying and/or trying to throw herself overboard. We miraculously made it all the way to Duke South where I reminisced about medical school by getting lost in the basement, just like I did every day of medical school. And Maggie got tired right as we made it to the Davison building and made me carry her all the way back to Duke North while pulling a wagon. But we snuck outside for 8 seconds to take a picture on the West Campus quad! (Note that I don’t actually have to wear a mask outside of 5200. But if I take off my mask, Maggie takes off her mask. So I wear a mask too)

Today was a special day in the hospital because they let us leave the unit! Except for her brief visits to the PICU, Maggie has been confined to a tiny hospital room, or the hallway outside her room. She was SO EXCITED to ride in a car around other parts of the hospital today. First we went to the fish tank, then we went to the children’s clinic building (after hours so no one was around). She was so excited that she hopped out of her car and walked (holding my hands) around the lobby. She lasted about 20 minutes on our adventure with full excitement before she got tired Then we explored some of the newer parts of Duke that I’ve never seen before by ‘car.’ I graduated from med school here less than 10 years ago and I can’t recognize most of the Duke medical complex. Then we tried to watch a helicopter take off, but there was no action and Maggie needed a rest, so we wheeled back to 5200. I’m already hoping we get to do it again tomorrow!

My partner in crime is finally old enough to run against Donald Trump in 2020! I’m thinking Rose/Obama (Michelle of course).

Also, Maggie had a great day today. She’s eating and drinking well, walking and playing. Her central line repair-number-2 worked, which means she’s off her IV and is allowed to use both hands again. Phew.

Who else would make a good running mate?

Admittedly Maggie gets a lot of screen time in the hospital, because she has only so much physical stamina and I have only so much mental stamina to play with blocks all day. And apparently 5 weeks is how long it takes a 16 month old (even one with Hurler syndrome) to learn to work an iphone. Maggie can now bring up the camera from the lock screen, which I’m fairly certain many iphone owners cannot even do. And below is her first selfie showing off her bald head. She had a fine day, but her line repair failed, but failed in a way that a second try was possible, so we are making do with a peripheral IV for another night. It really stresses the nurses out to have four 2-hr long medications due at the same time in a baby with only one small IV. And it really stresses mommy out to know that if she loses that IV, she gets poked for another, and it’s my job to keep it in. So far we’ve kept it in for 36 hours and hopefully we’ll make it another 12. No other big updates today, which is a good thing.

Maggie has officially engrafted! Her counts stayed high today (even higher, actually) and she has reached her first transplant milestone. She has many more milestones to meet, but this is a requisite first step. Unfortunately, she didn’t have a celebratory kind of day, because her central line literally sprung a leak this morning. It is a triple lumen and right above the hub where the 3 lumens merge and run together, her catheter developed a tiny hole. I am not surprised, because it has been twisting and turning for the last 5 weeks. So, I got to watch a central line repair, although we won’t know if it is successful until tomorrow and we couldn’t use her line all day. So poor Maggie had to get a peripheral IV and we had to switch off her 3 continuous infusions. And she may need another surgery for a new line. She almost pulled her NG again last night too, but a quick mom-hand and a fortuitous nurse check-in saved the day.

Today was a pretty great Sunday for several reasons:
1. Maggie’s ANC rose to 1989. That’s solid, and hopefully marks day 2 of engraftment. One more day >500 to be official.
2. Given the presence of some neutrophils in Maggie, we let Kaya and Laney come visit for a few minutes. They were very excited and managed to mostly keep their masks on. Laney was very pleased to actually meet Maggie’s doctors (she asks me where the doctors are every single time we facetime).
3. Maggie clearly felt a lot better this evening – she was laughing and pulling up and even smiling at the nurses (whom she has acquired a (deserved) mistrust of). She even drank 15 oz of milk today, and ate a fruit puree/yogurt and a bunch of goldfish.
4. She took a nap without oxygen. She just fell asleep again tonight and she’s not going to make it all night without it, but it’s a step in the right direction.

The Rose house has been a buzz lately with the recent visit from the Tooth Fairy. Aside from cold hard cash, you’ll never guess what else the fairy left behind. That’s right, a custom smelted Rose family challenge coin, designed by famed challenge coin engineer Steven Gangstead. Kaya was very excited. Laney’s FOMO was in high gear, and she was very distressed when after a full night of attempting to remain awake, she missed the tooth fairy.

Also, Maggie’s ANC was 1300 today, which is well over the 500 needed for one of the three consecutive >500 ANC days that make up the criterion for successful engraftment.

Our new au pair Mila arrived today from Colombia (via a few training days in NY) and the girls, Tommy, and his mom met her at the airport. A sleeping Maggie and I facetimed with her to say hello as well. We are very excited to integrate her into our family, even in the crazy disarrayed state that it is in currently. I hear they are off to the Museum of Life and Science tomorrow after a good night’s sleep.

Today was a pretty blah day in the hospital – Maggie was a bit cranky for most of the day, and so was I. I found myself agitated at a bunch of little things today – for example, the food trays are never right. Whenever we transfer units, they reset our orders and send a random automatic assortment of food. But why would they ever send an auto-tray to a 16 month baby consisting of coffee, a bagel with syrup (?), chewy bacon, and plain oatmeal with no brown sugar or other mix-ins?!? And lunch was no better. Maggie’s neutrophil count did not quite reach 500, but at least went up a little for the last 2 days straight. She is still needing oxygen but a bit less than yesterday. Highlight of the day was seeing another baby on the unit celebrate her 1st birthday – she is the only other kid with Hurler’s I’ve ever met, and she is very cute. I only briefly walked by the celebrations though, since I was having a pretty blah day, but I did snag a piece of birthday cake.