The response to yesterday’s post has been awesome! It feels like a blanket wrapped around Emily and her whole family – warm and cozy and uplifting. Thank you all —
Emily is still in the PICU – Peds Intensive Care Unit, but she is doing better than she was yesterday. Some symptoms are better and some are still being watched. She is still running fevers but they are not occurring as often and not going as high. The norepinephrine dose was increased again (for the second time) during the night because her blood pressures were continuing to be low – but her pressures were good all morning and the doctors stopped the medication completely about 1:00 pm – and so far(!), her pressures have remained good. Her heart rate has been better today but still runs in the 130’s at times. Her respiratory rate still seems high at times, when you would think it wouldn’t be. The vancomycin antibiotic dose was increased because her tests showed that the level of the medication in her blood was low. She received a transfusion today because her hemoglobin was 8.1, which is really pretty good for her but was less than this past Tuesday so the doctors are playing it safe – and were also hoping the extra fluid volume would help boost her blood pressures. All blood cultures are still coming back negative. The viral cultures won’t come back until sometime this week. The doctors said that her counts are trending up – and her ANC was 220 today, which is good. It has been down to zero – and they like it at 500 for good infection fighting but will let her go home sooner than that sometimes if everything else looks good. There is a pretty good chance that she will be able to move back to the regular Pediatrics floor tomorrow, but she’ll probably not get to go home for another few days. The doctors want to see more things trending upwards and remaining stable.
In spite of all of this, the real Emily – the reason she is called Stitch – is still there! Last night, she showed her nurse what a full-on two-year-old tantrum can look like. Of course, Pediatric nurses have seen them before, but Momma and I were a bit embarrassed. She decided that she had had just about enough of tubes and lines and blood pressure cuffs and oxygen monitors (little though they may be) and she decided that it was NOT a good time to change her diaper! And so she screamed (and I do mean screamed) and straightened and stiffened her body and managed to put her hands everywhere you needed to have yours – and even though two of us were finally able to get a dry diaper on her, she slept naked (except for the diaper and lines and monitors, of course) for the rest of the night because a mini hospital gown was NOT going to go onto her body – no matter how bad you might want it there! Her poor nurse just stood there and watched – and assured us that she had seen it before! (And to keep the record straight, she would have helped if I hadn’t been there to help Chrissie – not that you could call it help.)
And for the other side of Stitch – we have been watching many Barbie Princess movies – which, if you have kids, are actually not bad. The Rapunzel movie has a very cute, small, purple dragon who has a favorite saying, which Emily picked up rather quickly. Today, while I/Grammie was watching Emily for a few hours, and Emily was just sitting in bed, she all-of-a-sudden said, “Well, scratch my scales!” And THAT is our Stitch!
And, on another really good note, Auntie Jennifer made a surprise visit from Tulare, a 3 1/2-hour drive to here, because she needed to be here to support Emily and Chrissie. She can only be here for a day but sometimes that’s enough to soothe a sister’s worried heart.