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.

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.

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.

Tonight was our wonderful au pair Angelica’s last night at home before she does a quick round trip to Niagara Falls and Chicago (driving with her friends, in 4 days, I think she is crazy) and then heads home to Colombia. This was the girls’ last night with her and there was a party and presents and cake! Angelica came to say goodbye to Maggie earlier this week and Maggie was SO HAPPY to play with her. She will be surely missed. Maggie and I spent the evening being grateful for being back in her room on 5200 with our team of wonderful nurses and amenities. It feels like coming home after a (thankfully not that long) trip. Maggie seems to be feeling pretty well but is still needing oxygen and her breathing is a bit tenuous. But we got some great news today that her early chimerism studies show that all the circulating blood cells are donor derived, so her slow engraftment is likely not due to graft rejection and I am really hoping for a higher neutrophil count in the next few days. So farewell to Angelica, farewell to the PICU, and farewell to Maggie’s own blood cells!

Today marks 1 month in the hospital and to celebrate, we got shipped back to the PICU last night due to Maggie’s breathing fast and hard. She started having fevers again and with fevers come her fast breathing and need for oxygen supplementation. It was a bit less severe than last time, and they are similarly working her up for infections but thinking it may just be her engraftment syndrome. Our PICU accommodations are slightly more spacious this go round, and I have an interesting view of the new Duke Children’s Hospital construction site. Maggie has settled out nicely and is looking pretty okay tonight – I am hopeful maybe we can go back to the BMT floor tomorrow. No rise in her neutrophil count yet – that we are still waiting for. I facetimed with the girls for a while and all seems well at home. Kaya was very excited to report the tooth fairy did show up, and Laney is excited about Pirate Day at school on Friday. Sorry no pictures today.

Big news of the day is that Kaya lost her first tooth! She has been super excited for weeks (actually, years) about her wiggly tooth and today was the day. We’ll have to see if the tooth fairy can manage a visit tonight (he has been a little stretched lately, but I think will pull it off). In the hospital, Maggie had a good day although is feeling crummy tonight. I think she has actual engraftment syndrome (with that other stint being pre-engraftment syndrome). I’m hoping we can manage with Tylenol and lasix and avoid more steroids (and the PICU), but we shall see. She did have some neutrophils in her blood today, so here’s hoping for even more tomorrow. Is 500 too many to ask for?

Our hospital room is only so big, so keeping a baby entertained can be challenging. One way I try to mix things up is by giving her time in the different places in the room – her crib, my bed, her highchair, the floor (on a playmat), and on the chair. I think the chair is her favorite because she feels like a grownup, and because I let her watch movies on my computer. Her physical therapist tells me to give her lots of playtime in the “high kneel” position pictured here. I’m not entirely sure that watching movies in that position is what PT had in mind, but I think it still strengthens her gluts, right? No movement on her blood counts today, which is discouraging. She is still feeling okay and today they stopped her steroids to try to get a handle on her CMV and stopped her pain medicine (because I don’t think she’s in pain anymore). So we wait and high kneel.