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 🙂
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.
On day 2 of Maggie’s hospital stay, one of the nurses put up a piece of paper and asked me to write down every time she ate anything. So I did. And when I ran out of room, I started a new paper. And soon I had a wall of papers. And this wall of papers represents a sh**load of work on my part. Because I stopped weaning Maggie when I found out she was going to get a transplant because it is clearly the best nutrition for preemies with developing immune systems and there is some data to support decreased risk of gut GVHD with breastmilk. But then she quit breastfeeding on day 5 or so, since her mouth hurt and bottles are easier. And this has resulted in me pumping around the clock for the last 6 weeks, while also taking care of a sick hospitalized baby. But I truly believe that it has helped her get through transplant, as there has not been a single day where she didn’t want at least a little milk, and she has maintained her weight and came off TPN as soon as she engrafted. So, I am proud of this wall of papers AND excited because I coaxed her into breastfeeding just a little bit today. (Also, I just did the math, and I have pumped for 46 months of my life – that is nearly 4 years!) Otherwise no big updates – CMV levels are still high but lower than before. They are still tossing around the “D” word.
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.