I took Maggie to the Nasher Museum of Art at Duke. It’s walking distance from Ronald McDonald House. On Thursday nights it’s open late and often quite empty of people. Becuase of all the art, it’s also very low on UV light, which is also great. Maggie is super light sensitive because she’s taking a prophylactic anti-fungal called Voriconazole. She will often get what appears to be a sunburn from being in direct sun for about 20 seconds.

Anyway, at the Nasher, they were showing a video tribute to Buddy Bolden. Many consider Bolden to be the originator of what would later be called Jazz.

The movie was super creepy. Apparently, Bolden lived a tortured life and was institutionalized at 30 for schizophrenia, which was something they tried to and succeeded at capturing in the film. Maggie is too young to grasp the adult themes but found the bright lights, big people, and droning music fascinating.

Maggie didn’t get a platelet transfusion today for the third day running. That’s great news for a couple of reasons.

First, platelets are one of the last types of blood cells to engraft, typically. So this a great sign of engraftment progress in general. Her platelet count was 32 in the morning yesterday and 28 this morning with nothing added in between. A decline that small over a day can pretty much only mean that her body is producing her own platelets. Not yet fast enough to replace what is used on a daily basis, but much closer.

Second, platelet transfusions are one of the main things that keep Maggie going back the hospital several times a week. Getting off of them means getting some more daily freedom back.

Here’s Maggie in the clinic testing the stretchiness of a rubber glove

I have officially finished transforming our apartment at Ronald McDonald house into a toddler’s dream house. First, I couldn’t handle the anxiety of a baby with a platelet count of 30K to learn how to walk on hardwood floors, so I covered half the apartment in a play mat. Second, I pushed the two double beds apart and dragged one of the mattresses onto the floor, so I could leave Maggie on a soft surface when needed without risking her falling off a bed (if I had to run in the other room to get a new saline flush because she grabbed the first, as an example that happens all the time). Third, I put a pack and play in the bathroom so she wouldn’t have to sit on the floor and play while I showered. And lastly, I distributed our gigantic amount of medical supplies into a logical and easy to access drawer and cabinet network. Maggie is still doing well, although still looks like she is breathing quite heavy a lot of the time. I spent the night on Wednesday awake counting her respiratory rate (which I counted in the 60’s for a few hours, which is a really high number to me). Her team thinks it is still just her being out shape from transplant + Hurlers + her new post-transplant beer (milk?) belly. Otherwise, she is still getting platelets every couple days, IV magnesium nearly daily, Neupogen every other day or so, and IV infusions at home. But every day of the same is a successful day at this point. Day +42 today!

You might be wondering, how does one exercise while swapping one’s DNA with someone else? The answer, by walking up and down an L-shaped corridor over and over. Today we look at the 5200 hallway. Since Maggie spends 99 percent of her time in her room, the hallway eventually comes to feel like “outside.” One of the things I do with Maggie as much as possible is take her for walks, and I find myself using the phrase, “want to go out for a walk?”

Today we go inside room 5203, where Maggie lived for the last 45 days. She only left the unit twice during her stay (not counting the pre-discharge practice field trips on the last couple of days) to visit the PICU both times. Living in this room is a lot like living on a boat or RV. Everything is a smaller version of itself, and we have many fewer total things. Once you get used to it, having fewer things is actually really nice. Yay minimalism 🙂

Happy birthday to my little girl! It’s Kaya’s 6th birthday today. (She’s was very excited). Also, a target of opportunity: Angelica, our Au Pair from last year, called to wish Kaya a happy birthday and I was able to get her, Mila, and the girls in a single photo 🙂

Tracy says I need to post on the blog more, so I’m going to start with a three-part series tour of “5200”, the Duke Pediatric Bone Marrow Transplant unit, where Maggie has lived for the last 45 days, and I’ve come to think of as my second home.

Other than Tracy, Maggie, Baba, and I, no one goes through the airlock to see Maggie unless they’re either medial personel, or under my direct supervision.

I go in and out of the airlock all the time shuttling supplies, so contact precaution is very important for me, and very stressful because I could be bringing in unwanted pathogens. The airlock is where I take a few moments to meditate and mentally ramp up my contact precaution mechanics.

Today was one of the harder days so far, even though Maggie is doing just fine. It’s a long list of small things that have left me exhausted tonight – she has meds due at 7am and meds that end at 10pm, so essentially I can sleep a maximum of about 9 hours, except she wakes up several times a night which leaves me behind. And she now naps during her infusion appointments after she gets Benadryl before platelets, so I can’t sleep then (unless I let someone else take her, which I will not yet do). Plus giving her 4 IV infusions a day, plus drawing all her labs, plus coaxing her to take all of her oral meds, plus a 5 hour clinic/infusion visit, plus trying to get her to keep her mask on, etc, etc etc is hard! So this is me letting you know that life is harder for Tommy and I after discharge, and we appreciate your continued support. I’ve been asked a lot in the last 24 hours when I’m (physically) going back to work and Maggie is still a long way from a kid that I feel comfortable leaving with someone other than a nurse or her parents for very long. Photo today: I tried to give her a real bath tonight, which was great, until I had to take off the tape that was keeping her line dry, which made her cry for longer than bathtime. But here’s a pre-tape removal picture.

Maggie was officially discharged from the BMT floor to the Ronald McDonald House today. And I managed to give her 3 hours of IV medications tonight through her central line and am now fully trained in flushing a line, administering meds with a pump, cap changes, and dressing changes. You’d think I’d have known that stuff before, but I didn’t. 5200 had a confetti parade for us as we left the unit – Maggie was a little overwhelmed but it was fun. Coincidentally, a 21 year old pediatric BMT vet returned to the unit today for a dedication and the team also threw him a confetti parade, because he never got one back in 1997. We snapped a picture of him and Maggie for some inspiration. It was neat to celebrate with him as well, and hear him talk about his gratitude. I too am so grateful to the wonderful team on 5200 and am going to have to think of a better way to thank them than a few paltry hugs. The entire Duke PBMT team is quite amazing and Maggie has been so well cared for. Which makes it that much more nervewracking that she is now entirely in my care…except for the daily clinic visits that is.

Maggie and I took another trip to Ronald McDonald House today to get the apartment set up for her possible discharge. We are staying here for a bit post-discharge to keep her isolated from the germ-factories other girls and to keep her close to Duke. This trip, we were equipped with toys, but she still was somewhat unsure of the place and she was ready to come back to her hospital room after a few hours. As much as she has suffered some pain/discomfort in room 5203, she likes this little room and seems to feel secure here. She also LOVES the crib here, because she is up high and can throw her toys and her paci to the floor. Her favorite game is to try to get toys past me onto the floor. It is not my favorite game. Anyway, there is talk of possible discharge tomorrow if she continues to look this good and her labs/weight hold up. She is eating like a champ and I think she’s ready. Plus I am ready! Here is Maggie showing off her new place.