The NICU doctor came back and looked at Elanor again to see if there was another place on her body he could try a PICC line other than the site he tried yesterday, but has said he didn’t think that it was possible in her case. The team still wants her central line out, but they’ve decided to wait and see how the leg MRI goes tomorrow. Once Infectious Diseases looks at the bone MRI and makes a final decision about how long she’ll be on antibiotics, the team will revisit if they want to leave in the current central line (if it’s only a few more days) or if they want to take it out and put in a succession of IV’s (I see this as a BAD IDEA, especially as she knocks them out and the last one took 2 HOURS to put in) or to take it out and put in a new central line by her neck.
Ravi and I had our blood drawn today to look for those blood disorders Ravi mentioned in the last update. They will take up to a week to come back as they aren’t common tests, or so I was told.
Elanor is currently tolerating her feeds, although she did throw up once. Nutrition has her on an ounce and a half of breast milk twelve times a day (or about 45 cc’s every 2 hours from start of feed to start of feed). As she tolerates more, we can space the feeds out a bit to every 3 or every 4 hours. Right now she can do about 1/3 to 1/2 of the feeding on her own, and then she gets too tired to finish, so the nurse puts the rest of the feed down her feeding tube. But today was better than yesterday and hopefully tomorrow will be better than today.
We’ve also been told that Elanor could go up to the pediatric floor any day now. Like I said before, I’m a little concerned about it, but I will hold my breath and hope that she will get a private room at least. In preparation though, Ravi and I have set up a room at a local hotel starting tomorrow. To be totally honest, the set up here (while incredibly generous) is wearing on us, and a private room that locks without doctors and nurses coming in at all hours with a comfortable bed and a private bathroom with fluffy towels and hot water with good water pressure sounds a bit like heaven to both of us. We haven’t quite figured out the schedule yet, but there will be one so that Elanor gets her parents most hours and her parents each get some much needed rest.
After all, as one nurse pointed out to us as she urged us to go home for a night or two…how often do you get free babysitters who are trained medical staff? I suppose our answer would be…we don’t know…how often do Auntie Lynn and Auntie Sophie want to babysit for free? (just kidding)