Okay, I haven't updated lately. I wanted to wait till the roller coaster ride tamed down a bit before I worried anyone needlessly. Kiera remained sedated for a week. We successfully woke her from her paralytic and sedatives on Thursday 7/19 after having tried Sunday and Monday to no avail. We had a scare on Tuesday the 17th thinking we may need a risky surgery out of state that turned out to be a false alarm. Soooo... we are back to the diagnosis from my last entry that Kiera is very sick and will sometimes have bad days.
We held a care conference for her on Thursday. She has started getting antibiotics for a chiracia(sp?) infection in her lungs, a short term steroid treatment, and Raglan for suspected reflux that might be causing her to aspirate and cause her spells. So far she is recovering well. She is still weak from the week of paralytics and has lost weight and coordination. She is smiling though and hasn't had any spells. Kiera likes to dance with me while I sing to her. We danced today to "Under the Sea" from Little Mermaid and probably jiggled Kiera more than one should jiggle a sick baby. :) She had a ball! (with no projectile vomiting)
So arises the big question: when is Kiera coming home?
Her homecoming is on HOLD. We know she will be celebrating her first birthday on Sunday August 12th in the hospital. We are glad to be able to celebrate her birthday at all, and will have just as good a time in the hospital as we would at home. We will try to keep her party "small" for family, a few friends, and, of course, the NICU and PICU staff. If you would like to join us, call me, and I will give you the details. I am unsure of the time at the moment. It will probably be in the afternoon, say 3 or 4PM ish. There will be plenty of cupcakes ! (and mylar balloons...Kiera loves them!) If Kiera is on the home vent that day, we may be able to take her and the party out to Rachel's courtyard. We'll have to play it by ear, as we do every day.
She will come home when she's ready, and she will probably go back. Such is life.
Love,
Therese
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