We’re still waiting on the chimerism results. It’s a test that they like to discuss, and since results were not expected until this afternoon, we won’t hear about them until Monday. Crossing fingers that we’re at 100%.
Dr. P was very enthusiastic this week about Zoe, he feels that she has been a great case, given how well she’s done with everything, and that by her first birthday, she will be completely normal again. Rockstar is the word he likes to use. Normal is still the word that sticks in my head though, that’s essentially what we’re striving for here — a normal life for our girl.
Thursday’s labs looked good. No chemistry issues other than a drop in glucose related to her reduction in TPN. They’re working on weaning her nutrition so that we can get her off IV meds, the hope is that we’ll be on oral only before long and get her tubes out. A heel stick (blood test) came back normal for the glucose, so no worries there at the moment. WBC was at 3.4, which is where she seems to settle pretty often. She may drop again and need GCSF on Monday, but we appear to be out of the phase of stressing quite as much about that count. No one at the hospital seems worried about it, they’re much more focused on her chemistry’s at this point it seems.
We had our first true snafu this morning. We were closing up her lines (flush with saline, lock with heparin) after her night’s TPN, and when the tube was unscrewed her “cap” came off, leaving her central line open directly into her chest. The “cap” as it’s called is the barrier between her bloodstream and the big bad germy world — having it off for even a few moments is a bit scary. We do cap changes regularly, but we wear masks and Maya has to stay out of the room entirely, the cap is off for a matter of moments only while Michelle and I essentially hold our breath, so anxious are we not to have anything enter that line.
So having the cap come off and go unnoticed as it bumped around in her nightie is, well, not ideal. We noticed it was off when it was time to hook up her Tacrolimus, so it was a matter of a few minutes that it was open. A quick call into the hospital revealed that it was not something we leave unexamined and go on about our day, so Zoe had an unexpected trip to the clinic this morning.
At the clinic they did a line culture, which they’ll test to see if anything is growing in the line that could cause infection, and gave her a dose of Vancomycin, a fairly hefty antibiotic given preventatively in the case of a line breach. Hopefully nothing more comes of it, so far she has no fever or other symptoms of sepsis. That’s what we’ll be watching her for this weekend.
Having something like that happen really brings home how tenuous all of this is at times. Any little infection in her line can really cause huge problems. All the more reasons to get those things out of her.
On a lighter note, being back in Durham has given us a chance to revisit what we liked about the Triangle when we lived here. On Wednesday Maya and I went to (what used to be) Exploris, now known as Marble Kids Museum, and after about 2.5 hours of all-out-play-frenzy, took in an IMAX movie. Great fun. It’s a little strange to be a tourist in a place you used to live on the one hand, but on the other, we know some of the best spots already and can make the best of our free time.
Next week could be a big one. We’re hoping to hear back great news on the chimerism, get her off TPN, and potentially schedule a date to get her lines out. If we can move her Tacrolimus to oral, she will be free finally, having spent now 5+ of her 7+ months with tubes in her chest.
We’ll have to have a party. 🙂
I hear Zoe has two teeth coming and is eating cereal and vegetables. That Zoe just keeps on with her normal baby things in spite of what has happened in her short life. Normalcy in the midst of a surreal time. What a family!
Dear Evan and Michelle,
We are pleased with your posting today! Zoe is a smart little girl – she is doing what she should when she is supposed too. I love the pictures, especially Maya at the water park. Thank you for sharing – we look forward to hearing from you all.
Much Love, Nannie