Maggie and I returned to our “normal” routine a bit today – she had mouth care, had “play” time on a floor mat (which lasted all of 7 minutes the first time and a bit longer the second time), had a decent afternoon nap, and I had my coffee before noon. She is still having mild fevers and needing oxygen but looks a bit better. Still no smiles though. The rest of the family spent the day in the car on the way to Duck and arrived safely for a dip in the pool before bedtime. Laney managed to facetime me and and then carried the phone around toddler-style so I’ve gotten a nice tour of the ceilings in the beach house. Here is a pic of Maggie not smiling, and the other faction at a rest stop on the way to OBX.
Maggie graduated from the PICU today and we are thankfully back on the BMT unit – she has stopped having fevers but still is needing some oxygen and having episodes of fast breathing and heart rates. And she remains super cranky and wants to be held all the time. But I think mild progress overall and nothing horridly unexpected. My body is super confused after barely sleeping for a few nights and a bunch of coffee and a nap today – hoping we are not permanently flipping our days and nights. I didn’t take any pictures again today, so here’s one from a few days ago when she was still feeling okay.
Maggie and I are spending another night in the PICU but I think she seems better on the steroids they started. Her fevers are definitely improving and I *think* so is her breathing – she has a new cough and is being treated for pulmonary edema. Now we are in essentially a waiting game for the next couple of weeks until Maggie’s new blood cells grow, hopefully newer better enzyme-producing blood cells. She seems more settled tonight, but has not smiled at me all day and I only got one weak wheels-on-the-bus gesture all day long. I hopeful she will sleep better tonight and feel more like herself tomorrow. Meanwhile, Laney had watermelon day at school yesterday and reports a grand time despite her hatred of watermelon. And Kaya seems to be enjoying Little Farmers summer camp. They had a dance party at a local restaurant with Yoya tonight and look like they are doing just fine. Sorry no pictures today – the only picture I took is a picture of Maggie’s central line site which looks a bit gnarly but I’ll spare you that one.
I have a small bit of transplant experience, plus we were extensively counseled going into this, so I am well aware that pretty much no one gets through transplant without some complications. And well, Maggie is no exception. We spent the day in the pediatric ICU today after a long night of very high unbreakable fevers and fast breathing. The PICU can give a higher flow oxygen that the BMT unit, so even though she is able to maintain her oxygenation on her own, the higher flow makes it easier for her. The team still thinks this is possibly engraftment syndrome, but she has also already reactivated her CMV and infection is also possible. So tonight I will try to sleep in a chair in the tiny closet they call our PICU room. All in all though, I think she is doing okay for now – we sort of expected her to have respiratory issues with her mucositis given her Hurler’s and we expected her to reactivate her CMV. And I’m holding on to hope maybe she will engraft on the early side if this is really engraftment syndrome. So we’ll continue to spend the days/nights cuddling:
Not exactly the first haircut I had in mind for Maggie, but I really think those pigtails were weighing her down. So introducing the new beautifully bald Magnolia Rose. Poor baldy is still having high fevers (like 104ish) every 6 hours – I assumed the worst of some undiagnosed severe infection, but her team made me feel a little better by suggesting she could just have early engraftment syndrome (apparently “pre-engraftment syndrome” is a thing that happens with cord transplants and day +5 is not out of the question). But she is undergoing a big fever workup and pretty much cycling between fever misery and feeling okay every few hours. Stingy Duke has even let us have some apparently pricey IV Tylenol – big spenders! Here’s the slightly-lighter Maggie during one of her good hours today.
Maggie had a better day today, although she has persistent fevers and now positive blood cultures (probably strep from her mucositis) so is on big gun antibiotics. But she found time to play and smile some today – the below picture is mid-“If you’re happy and you know it” sing-a-long. Her hair is also starting to really come out so stay tuned for tomorrow’s likely buzz cut. An early night for this mama after a couple days/nights of heavy baby snuggling though.
Every night I feel the need to write two blog posts – one each for the split factions of our family. The mommy/Maggie faction had a rougher day today on day +3. She had a fever pretty much all day and clearly did not feel well. She is eating minimally and pain medicine didn’t help so much, as I think her crankiness was mainly driven by her fevers. She is feeling slightly better tonight, and getting her first bag of platelets as I write this.
The other family faction had an action-packed day in Boston – I was texted a photo diary which looked to include a trip to play with Audrey, a Red Sox game, a rickshaw ride, a ride on the T, a stop by our old house for a slideshow by Peter’s (our old landlord) son, and meals at O’Leary’s (our old local Irish pub) and Zaftig’s (our old Jewish deli – really need a Zaftig’s in Chapel Hill).
Many congratulations today to our good friends James and Niall today on their wedding day. Maggie and I celebrated from the hospital, and the rest of the family celebrated in person in Boston. I heard they had cheesecake and smarties – something for everyone! A picture with the happy couple is below.
Meanwhile on day +2, Maggie is feeling the chemo a bit and had a harder day than prior. The NG saga continues as the report of a magically appearing NG tube was apparently false (or they lost it again) – suffice it to say that I am very unimpressed that Duke cannot manage to come up with a proper sized tube for my baby. But if that’s our biggest issue, I can hardly complain.
I find it oddly calming that Maggie’s transplant day also fell on the summer solstice. For some reason it makes me feel like the karmic universe really thinks it is a special day. And now, the days will just get shorter and shorter until engraftment! We had a pretty uneventful day, which is exactly what we hope to have every day. Duke still had no NG tubes in stock today, and I got worried about waiting too long since her platelets are dropping – and I have been having a hell of a time getting her to take oral ursodiol – so I decided I’d just figure out how to borrow one from UNC (with full intention of paying for it at some point). Magically, however, when Duke got wind of my plan, they found an NG for her! So NG tube placement is on her agenda for tomorrow. She is still feeling pretty well, although was slightly more cranky and a bit congested today so her mucositis may be kicking in. Tommy and the girls flew to Boston this morning and many thanks to Baba for spending the day to give me a little reprieve.
We made it to the first “milestone” today: her actual transplant. It went as expected, although the syringe was disconcertingly tiny. I am excited that we get to start counting days as “plus one” and beyond tomorrow, although she is currently feeling okay and the hard days/weeks (months?) are still to come. We had a brief “re-birthday” party to mark a new beginning for Maggie. She was cheery all day because it turns out that the entirety of Duke Hospital is currently out of size 6.5Fr NG tubes and they had to order more, so Maggie gets a several day reprieve from her NG. She therefore got to look snazzy for her transplant photos. Here is Maggie saying “Gimme those stem cells!”