Tribe members that have been with us for several years now may recall that, in February of 2022, Scarlett contracted bacterial meningitis from an infusion, in which she was in the hospital for nine days. You see, Scarlett gets infusions of Brineura at Boston Children’s Hospital (BCH) every other week, in an all-day-long process in which the medicine is fed directly into her brain from a port installed in her skull. As such, there is always a risk of infection, and it happened again last month.
I had taken Scarlett into BCH for her usual Friday infusion appointment on March 24, 2024, where everything had seemingly gone just fine. However, the next morning, BCH called us at home. When Scarlett has her infusions, one of the things that is done is to take samples to inspect things like her white blood cell count, any potential infection, etc. And the phone call was to tell us that they had seen some bacteria from the samples on the prior day’s infusion. They wanted us to bring Scarlett in as a precaution.
Now, keep in mind that — in the incident that happened two years ago — it was actually Gina that noticed that Scarlett was “off” to some extent. Mother’s Instinct being what it is, she brought Scarlett to the hospital herself, and they discovered the meningitis, telling us that Scarlett may not have survived the night if we hadn’t brought her in. But this time? Well, Scarlett was a bundle of joy without a discernible issue present.
Still, Gina brought her in to the ER as requested… where she sat for 7 hours with Scarlett. They admitted her and got her started on an antibiotic via IV as a precaution. They also took a second sample, just before starting the IV, as a comparison. Gina ended up spending the night there with her, and it was learned that the second sample found no bacteria. Still, the hospital wanted to wait and see what the bacteria grew into to determine the seriousness of the situation, which meant staying even longer. So I swapped out with Gina the next night. The whole time, though, Scarlett’s mood never changed; she was her usually happy self, literally hopping around in her bed while enjoying her usual YouTube music channels on the TV.
Eventually, I was visited by the Infectious Diseases (ID) team, who told me that the bacteria they had found in Scarlett’s port was Staphylococcus aureus, which they said can be aggressive. Their recommendation was brain surgery for Scarlett to have her port removed, and then a second surgery once it was clear that the infection was no longer present to put in a new port. We had done this just two years ago and were reluctant to do it again. And, at least back then, it was clear to anyone that saw Scarlett that she was in dire straits. Here, Scarlett seemed just fine. Plus the second samples had found no bacteria. We were told it was of course an option to not have the port-swap surgery, but then we ran the risk of the infection spreading if present. Of course, Scarlett had also been on antibiotics since she had arrived as well, though…
Gina and I talked it over, and we were leaning toward not doing the surgery. The ID team also was in talks with the Neurosurgery team, with the Complex Care team bridging the gap. Basically lots of teams all giving input on the situation. Now, this was over Memorial Day weekend (because of course it was), so they were waiting for everyone to reconvene and they would all discuss what they thought was the best overall recommendation. Thankfully, they came back with the recommendation to leave the port in. Scarlett hadn’t seen any changes in her behavior, had been on several days of antibiotics by that point, and that second sample had shown nothing, either. They wanted her to continue antibiotics, though, so they wanted to install a PICC line in her so we could continue them at home. For that, they wanted to sedate her and bring her to the surgical center for it. After doing this, they wanted to monitor her and see that she was okay for 24 hours before sending her home.
Well, complications began around this point. Ironically it wasn’t until the PICC line had been installed that Scarlett started having issues. Her mood worsened, and she had alarms going off regularly in her room regarding low oxygen intake. They gave her a chest x-ray, and even an oxygen mask at one point, and her numbers were still super low, with her not even waking up at one point. She also had several seizures during this time. Every time this happened, and alarms would sound, what seemed like the entire floor of nurses would rush in to try to assist. She also vomited during his time as well, which she almost never has done in her life. Needless to say, they didn’t want her to go home yet. They even hooked her up to an EEG to monitor things further.
One thing that they did notice, though, was that the PICC line needed to be moved a few centimeters. I was told it was “tickling her heart,” which is just a terrible phrase that nobody in medicine should use. They did this bedside, adjusting her PICC line… and her mood improved. It basically went right back to how she had been before the PICC line. Of course, I inquired about the correlation and was told by someone that it was unlikely to be related but… how curious.
They still needed to make sure that she was good for 24 hours before sending her home, though. She had also started new meds that they wanted to make sure she responded well to, and we also were arranging for delivery of the in-home meds to administer once we were released.
Saturday, June 1st came. It had been a week since Gina had brought Scarlett in, the two of us swapping overnights and working from the hospital during the day. I was told around 11am that Scarlett was good to go home and they were working on discharge papers. Around 8pm, we were both finally in the car and on our way home.
Scarlett’s now been home for another week. We had hoped to send her to school, but BCH never sent the school the requisite paperwork regarding her meds, so she ended up spending her penultimate week of kindergarten at home. There were a couple of spikes of concern, when we noticed some hives on her face, and she did throw up once, but I brought her to Urgent Care nearby and she was deemed okay overall. We presume it was just from the antibiotics doing their thing. And of course some points of discomfort from having a needle sticking into her arm. But, overall, she has been a very happy girl, and back to normal.
In fact, she basically was normal the whole time, until the PICC line surgery. It’s tough because, you hear that your daughter might have an infection, and of course you want to speed on over to get her checked out. But then you’re bound and imprisoned until they deem you safe to leave. It makes you question even bringing her in, unless you’re prepared to spend at least a week in the hospital while they figure things out.
But things have settled down now. She is getting the PICC line removed here at home today, and she will be able to return to school for the remainder of her last week. And we have a lot to look forward to as well! We will be going to Ohio next week to pick up her service dog! And Scarlett will be starting First Grade come this Fall. But hopefully we are done with the extended hospital visits for a very long time.
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