June 1-headed to the OR tomorrow
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#miraclesforAvryJo
June 1 PM update
Today was thankfully a fairly uneventful day.
Today was thankfully a fairly uneventful day.
I had an extensive conversation with the NP today because I was really curious why Avry needs such a long course of high-dose antibiotics—14–21 days—even after 3–4 days of clear cultures, especially since there is evidence that the infection was contained to the Broviac catheter.
He gave a few reasons why Avry’s team is recommending such an aggressive course of treatment:
• The Broviac goes directly into a large vein straight into the heart. Even if the bacteria seems to be living primarily in the catheter, it has direct access to the bloodstream. What is “contained” today can become a bloodstream infection tomorrow.
• Bacteria can form a biofilm. Some organisms create a slimy protective layer on the inside of the catheter. Once bacteria are hiding in a biofilm, they can be difficult to eradicate and can intermittently shed bacteria into the blood.
• Avry’s immune system has been through a lot. After high-dose chemotherapy, transplants, immunotherapy, and prolonged treatment, doctors have a much lower threshold for aggressive treatment because even a small infection can become serious more quickly and this is not a small infection.
• Rare organisms often require extra caution. Since the bacteria they identified is unusual or slow-growing, there is less data available about the safest minimum treatment duration. Infectious disease team recommend a full course to reduce the risk of recurrence.
Most importantly:
• They want to prevent the infection from seeding elsewhere. If bacteria escape the catheter and circulate, they can potentially settle in other locations such as the heart, lungs, bones, or other tissues—even after the central line has been removed. Treating thoroughly helps prevent that.
• Four days of positive cultures before removing the Broviac points to a very serious infection—one that does not simply disappear overnight or resolve without aggressive treatment.
The PICC team has been coming in twice a day to do blood draws, but even so they are having trouble accessing her veins, and it’s causing a lot of pain and discomfort. The team feels it is best to get a PICC line placed as soon as possible.
Previously, they had told us they would likely wait about a week before placing another line because they needed to weigh the risks of inserting a new central line in an immunocompromised child who is still so susceptible to infection. But at this point, the risks of continuing without reliable access outweigh the risks of placing another line.
Avry Jo is scheduled for the OR at 9:00 a.m. tomorrow morning.
Please continue to pray for all of us.
Pray for wisdom for her medical team. Pray for a smooth PICC placement. Pray that this infection is fully eradicated and never returns. Pray for comfort for Avry as she endures yet another procedure, and pray for peace for our hearts as we continue to take this one day at a time.
As always, thank you for loving our girl, praying for our family, and carrying us when the road feels heavy. 💛
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