Day 1 of 4 week antibiotic treatment for the port

This is by far the hardest days since diagnosis.  So hard that I will take 4 weeks of family leave starting today.

We got a visit from Infectious Disease Department yesterday.  They have new recommendations for septic patients who have a central line device such as the port, and have had blood culture positive.  The bacteria they found in the blood culture on Friday when we came to ER is Staph, the harmless bacteria that lives on human skin.  Maybe Lucas bit the inside of his mouth, maybe because he had a sore on his lips, maybe Lucas got a minor cut somewhere on his skin, or maybe he bled a little when we tried to floss or brush his teeth -- we don't know how but this bacteria got into Lucas's blood stream.  For healthy people like you and me, no worries as the "segmented neutrophil" type of our white blood cells fights those foreign intruders such as bacteria infection just fine.  But for chemo patients with impaired immune system, it could be very dangerous.

The fact that Lucas had a positive blood culture (yes, we asked about the possibility of false positive from contamination, the answer is for Staph it's very unlikely to be false positive), and an implanted port, triggers the following antibiotics therapy:

(1) Ancef Cefazolin, the antibiotics came from the sensitivity test, will be used in IV every 8 hours for a continuous 4 weeks.
(2) Vancocin Vancomycin, the strong broad spectrum antibiotics, will be used for the lock antibiotics therapy.  It's measured just enough for Lucas's port, so very tiny amount.  It will sit in his port for 1-2 hours, then taken out.  Repeat daily for 4 weeks.

What does that mean for me?  That means I will have to be his unofficial nurse again!  We can't stay in hospital for 4 weeks, insurance won't pay for it and staying in hospital always carries the risk of getting a hospital super bug that's drug resistant.  Every 8 hours means the home care nurse can't do it all either, as she has a 40 hour/week schedule also.  For the record, insurance usually pays for up to 3 times/week of home care nurse.  So when these were all explained to me today, by a big crowd of various medical staff, I have no choice but to say that Yes I will learn to administer the IV abx and the lock abx for the port.   He will be accessed continuously for 4 weeks, the longest we have ever experienced. He most probably would get the needle change without the numbing cream. This is so much pressure for me that I immediately contacted my manager that I will need to take 4 weeks off. I'm still waiting to find out the details of family leave but felt the support from my team and have transitioned the work to a coworker this afternoon.

OK, being the nurse is not that bad.  Roughly 8 days out of these four weeks Lucas needs to be hospitalized for scheduled chemo (high dose Methotrexate), estimated 4 days in a roll each time.  We started 4 week therapy today and expect to go home on Thursday or Friday (his last fever was 12pm today, fingers crossed that no more fever and ANC starts to go up), so 3 days there.  We will go to clinic weekly, especially on the off-chemo weeks, so 2 days there.  Then I will still try to schedule home care nurse -- though it doesn't seem to be very considerate to let her do the lock since there will be at least 1 hour of wait time.

And we have no alternative anyway. Staph is known to like to hide out and grow on the port itself and there's still a slight chance that it will grow there even if the blood cultures continue to be negative. 4 week therapy is a new recommendation that would lower the possibility (waiting for actual empirical numbers from the infectious disease doctor). It's much better than taking the port out, then wait to install another one, since the surgeries are rather involved.

The good thing is that Lucas's fever is more spaced out and not as high, and his energy level comes back a little.  His ANC today is still zero, but WBC, hgB and platelets all improved.   The best part is subsequent blood cultures are still negative.

Lucas will need an ECHO to make sure his heart is in good shape since blood infection from Staph could potentially harm the heart. This is usually done day 5-10 from the positive blood culture. Keeping my fingers crossed!