I was pretty strict with both Kaya and Laney at 18 months that 1) no screen time and 2) no pacifiers except to sleep (for Kaya, I had already taken it away cold turkey by now). Maggie, however, I fear I am turning into a ipad/pacifier monster. Because this is now day 11 in the hospital (this time) with a toddler that feels perfectly fine. And Mr. Ipad and Doggie the Paci are really getting her through. Luckily they let us roam around the hospital today. Her drain is putting out less and less and tomorrow she will get another echo to make the final decision on her need for surgery, which is tentatively planned for Monday. I have managed to get her hospital interventions down to: vitals every 8 hours, labs only three times week, electrolyte replacement on the outpatient scales (instead of the aggressive, inpatient ones), and all oral meds. So she hasn’t even been hooked up to an IV for days. Hoping we are not here too much longer.

Kaya started first grade last week and we got word today that Laney will officially start “preschool” next week (which is really just the oldest class in her daycare), and they seem so grown up all of a sudden. Laney gets to switch classes with her best bud Molly and celebrated her promotion by having ice cream with daddy today.

Maggie is doing fine and her body is still working hard to dump fluid into her pericardium. She is likely headed down the surgery route, but no details as of yet. Poor little pumpkin!

We had a VERY quiet long weekend here at the hospital. Maggie’s pericardial drain is still putting out plenty of fluid with no end in sight, but she is happy and feeling fine. We have played with every toy on the floor at least 10 times. We are essentially in a holding pattern to see if she is going to need surgery (called a pericardial window) or if this fluid fluid will slow down on its own. Albeit annoying and somewhat scary, this is a very standard complication for the BMT team here, so they say. Here is Maggie playing peek-a-boo at lunch yesterday.

Well, day three back in the unit and Maggie’s pericardial effusion is back. They drained 50cc the first day, 5cc, yesterday, and 70cc today. Tracy thinks the draw yesterday was stopped prematurely because of a kink in the drain line, so we don’t have good data on the rate of fluid buildup other than at least 70cc every two days.

The effusion fluid appeared redder today, but we tested it and it had a hematocrit of only 2. (Compared to Maggie’s blood which has a hematocrit of ~29). Meaning, the fluid was <10% blood. Whatever the fluid is, it continues to be produced prodigiously. We’ll wait to see what drains tomorrow. Our hospital stay now has no particular end in sight.

In the mean time: let’s go for a drive!

Maggie and I have settled back into Duke 5200 – this time we have a purple room on the right side of the unit, instead of a yellow room on the left. The parent “bed” (read: bench) seems less forgiving than I remember, otherwise, the room is pretty much the same as last admission.

Maggie had her pericardiocentesis this morning – they took off 50cc, which doesn’t sound like that much, but in my review of the literature, it’s maybe on the small side of average for effusions that get drained in a kid her size (5cc/kg). She did fine with the procedure, although was pretty cranky the rest of the day (from anesthesia? or having a drain in her heart? or being back in the hospital? or being tired from partying all night last night instead of sleeping? all of the above?). I read a few papers on post transplant pericardial effusions – they are more likely in young kids (<2), cord blood transplants, kids on cyclosporine, and maybe more common in kids with metabolic syndromes (the metabolic syndrome correlation is in the same direction in all the papers but not ever significant due to power – someone needs to do a meta-analysis. Someone other than me). Interestingly, one of the papers states that all the kids with effusions had vomiting beforehand, which doesn’t make any sense to me (and her team of docs here doesn’t think it’s related), but maybe is why she has been so pukey lately. I see absolutely no difference in her symptoms so far after drainage though. Anyway, we are here until her drain stops leaking fluid and we are settling in for the long weekend.  Here is Maggie pre-procedure today while she was still happy.

Here’s Maggie, double fisting chicken nuggets at her clinic visit today. Does this remind you of anyone else in the family? Daddy?

Also, Maggie was readmitted to Duke 5200 today. She has a pericardial effusion, i.e. fluid build up around her heart. Per Maggie’s doctors, this is most likely “immune-mediated” meaning it’s caused by an off-shoot of her new immune system getting confused about all these funny looking heart cells and recruiting fluid to the area to help get rid of the pesky heart. It’s a lot like puss surrounding a splinter, except it’s on a larger scale.

The next step is to mechanically drain the fluid using a tube, which is a surgical procedure. Also, since fluid will continue to develop, the tube will be left in so it can be used to drain more fluid periodically. All of this boils down to more time in the hospital on 5200. Out of the ~463 pediatric transplant patients at Duke in recent years, approximately 10% had a pericardial effusion side effect such as this.

The family is starting Ballet! Never to early to start building the love of dance.

I spent the morning doing hair, and the girls were super excited.

Thank you Gammy for finding all the outfits!

We were SO excited to have pleasant weather last night and Maggie could not wait to go for a walk outside. If it’s too hot, she gets too short of breath to spend any time outside (I freak out when her breathing gets super labored and bring her back inside) and she can’t be in any direct sunlight. So last night was the first opportunity in months for her to spend more than a few minutes in the fresh air. And she was SO happy. She is so sick of our little apartment and walked holding my hand for farther than I’ve seen her walk in the last week or two. She is still a little bit pukey and sleeping more than before, so it was nice to see her happy and active. Fall cannot come soon enough. Summer is typically my favorite season, but I am ready to put summer 2018 behind me.

Some good (but a little complicated to explain) news on Maggie’s bloodwork yesterday. I’m learning a lot of this as we go, so I’ll share some of that.

Maggie’s white blood cell count went up without drug assistance from 3.2 to 4.3, which is a great number. The threshold for treatment (for Maggie) is 3. So, to start above 3, and then climb way out of the treatment range is a great sign.

Even better is the percentage of white blood cells that are Lymphocytes. Lymphocytes represent the cornerstone of the adaptive immune system and are the cells that would battle off a viral infection. Potential viral infections are one of the main reasons we have Maggie quarantined from other people.

The percentage of Maggie’s white cells that were Lymphocytes was 33%. The typical cord blood transplant child that is 62 days post-transplant would be about 3%, so she is WAY ahead of the curve here. Great news. She’s also doing this while on a drug called Gancyclovir that has known marrow suppressive side effects. (She’s on Gancyclovir as an anti-viral because she has an active viral infection called CMV).

For the future: One type of lymphocyte is the CD4 T cell. These are the same types of cells that you’ll hear people talk about for patients with AIDS. One of the next major hurdles that we’ll try to cross in the transplant process is a CD4 count above 200. We haven’t even measured her CD4 count yet. That first test will happen somewhere around day 100 post-transplant. When the CD4 count hits 400, that’s when Maggie can safely weather a viral infection.

Shown here is Maggie interacting with a 3d model of a blue shark lymphocyte.

When Tommy and I planned our wedding, we argued about very little. All the details we either agreed upon, or one of us didn’t care enough about to argue. But we both wanted a wedding picture with the chapel in the background and one of the only things I can remember disagreeing about was whether to take the picture at the Campus Dr/Flowers Dr circle, or on Chapel Dr closer to the chapel. I think I ended up getting my way (the closer picture), and then regretting it and wishing I had the distance picture. Well, Maggie and I went for a run the other day after it cooled off (I ran, she stroller-ed) and stopped at the Campus Dr circle to shoot a picture of our own. The chapel is pretty tiny in the background though…so maybe I was right after all.