Silence

Well, my silence lately has really been due to a lack of news. The only news I would have shared is that we were taken off isolation on Tuesday. Two hours later they were moving us into a room with a roommate because they needed a private room for a kid who needed isolation. There was some drama because I was trying to finish a Memorial DVD for little Lincoln that passed away because his memorial service was that night at the Ronald McDonald House, so I basically told them I’d move when I was ready. That didn’t go over well, but Angels Barbara and Stewart happened to stop by at that exact time so they helped moved us into the other room. Our roommate is a teenage Indian boy that is currently living in Indonesia and flew here with his family for an oral specialist. He has an aunt in NY that the rest of the family stays with. They are fantastic people to have as roommates, very kind and considerate, and we’re sad to see them being discharged today. It brings the stress of the “unknown” with who will come in next. Hopefully nobody with a cold or else we’ll be asking for a rematch since Eli is still neutropenic!

0.1 is the magic white blood count number. It just simply hasn’t budged, regardless of the fact that we’ve been giving the highest GCSF dose we can for his weight. Nobody has a great answer as to why, but there is a theory. For the last 4 days, every blood culture drawn from Eli’s central line has been positive for an infection. The antibiotic has been having no effect. So today, like a bad dream, I heard “We’re going to have to remove his central line.” Ugh. So within 2 hours, they had the anethesiologist and the surgeon lined up to get his central line out and to put in a “temporary line”. Basically, they pulled out Eli’s white “pipes” and put in another smaller set on the left side that is meant to only last 6-8 weeks. They did this because they want the option of pulling it out as well if the infection gets to it. They don’t want to put in another permanent one and then have to turn around and remove it if the infection doesn’t clear. So what happens in 6-8 weeks? They’ll decide if they want to put in another permanent Central Line or if they want to put in a port.

A port sits under the skin and it gets “accessed” whenever needed. Whenever he isn’t in treatment, it’s untapped and he can be more normal with baths (Eli prefers showers) and swimming and such. When they do need to access it, it’s a poke, but they put numbing cream on his skin so he doesn’t feel it. Everything I just said comes from knowledge of other kids that have ports, we’ve never discussed a port with a doctor, so stand by for corrections if I’m off base. 🙂 The big plus of a central line is easy constant access and they can withstand the demands of a stem cell harvest. Since we’re all done with stem cell harvests, you never know, we might be seeing a port in our future.

Hopefully the removal of this line clears up the infection that was sitting in it. Also, the doctor said that sometimes removing a line will actually allow the counts to fly up, but it’s not a guarantee. All I know is that I’m ready for those counts to come up so we can get out of being inpatient! Eli will need to be on the antibiotic until 1/28, but we can administer that at home, so thankfully that’s not keeping us here.

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