Zoe has had a big day so far today. We’ve just checked into the Duke Pediatric Blood & Marrow Transplant unit (PBMT), known here as 5200.
We started off this morning with two alarms to wake us up: one at 3:30am, and one at 5am. The first was to get Zoe’s last feeding in before her NPO starts and she isn’t allowed to eat, the second to get us up in time to make a 6am surgery check-in. We didn’t actually make it in until 6:30 am, but who’s counting.
The procedure went as well as could be hoped for. Zoe got a 2nd Central Line put in (installed?), and now has 3 tubes dangling from her little chest. One from the original Broviac, and 2 from the new one, which is what’s called a double lumen. She is recovering just fine, other than a little flush we didn’t notice any major changes to her temperament or condition after the surgeon was done.
Later in the day Zoe is due for her last dose of Fludarabine. Fludarabine week has flown by, we’ve seen little or no reactions whatsoever, so when they say it’s a well-tolerated medication they aren’t kidding. The next few days should get more intense as we finish up conditioning and knock out the rest of her bone marrow. She will have no immune system left by the end of day Monday, so between now and then we will see how things go.
A little about the PBMT unit, or 5200.
The Pediatric Blood & Marrow Transplant unit is a self-contained portion of the hospital reserved specifically for transplant patients. It has 16 beds, a common room for kid’s activities (including siblings), a kitchen and laundry for parents’ use, and a room to store workout equipment and large toys.
Each room, with the exception of two (which are a suite of sorts, sharing a bathroom when siblings are being treated), has it’s own bathroom reserved for the occupying child’s use, or in the case of infants the live-in parent’s use. Rooms also have a small TV, refrigerator and “couch” that folds down for the live-in parent to sleep on.
The unit itself is on a separate air system and is what’s called positive pressure. This means that all air enters the unit from it’s own system and only exits the unit. Outside air doesn’t enter to prevent airborne contaminants or infections.
To enter you go through a large hospital door into a room akin to an airlock. Only one door is allowed open at a time. Visitors enter, put covers on their shoes (or change into “clean” shoes from lockers that each room has) and wash. Then they can enter.
So far we’ve met several parents here, all very nice of course. One family from Wisconsin here with their 3 year old who just arrived pre-transplant, and another family 1 month post-transplant with both their 9 week old and their 2 year old, who had the same condition and are using the shared suite.
Finally, I didn’t get it up yesterday, but here’s a short clip of Zoe playing last night before we were admitted.
I hope everything goes well.
Zoe is in my prayers.
May god bless you all.
She looks beautiful and healthy, as usual! Mara
Dear Evan, Michelle and Maya,
We are so glad to look forward to hearing from you each day. Zoe is making good progress and we are so happy for that.
We enjoy the pictures and videos. I told Zoe to talk to me today and she did!! She smiled and formed her mouth as if to speak. What a great personality she has.
You are all in our thoughts and prayers. Hug Maya for us.
Love, Nannie and John
So happy to hear things went well today. We are praying that things go well next week!
I loved the video of Zoe. She is such a happy baby!! Love to you all!!
Beautiful smile! Beautiful baby!