Day 39: Packing for somewhere

Emerson is comfortably sleeping as I write. Last night around 9 p.m. they took her off of low oxygen support and she has been breathing room air. Dr. Webster told her "that big girls breathe on their on in November", Em is listening.

Emmy is off of all monitors (thanks Denise for instigating this). We are trying to handle the cold turkey withdrawal of monitor loss.

Emerson took a five minute ride around the unit in a blue kid seat with wheels. She moved her eyes quite a bit, while she didn't smile, I thinks she enjoyed the sitting position, movement, new scenery and all the smiling staffing. Loyola staff have been visiting her all day. Yesterday, when Jessica was here alone, the attending doctors all came to visit her at once, they were thrilled with her recovery. It really is amazing. Denise, who has been with Ems the most and takes wonderful care of her, said that this is one of the reasons she loves working with kids, they recover so well. For many of newer nurses, residents, respiratory therapists and other staff, Emerson will be one of their stories. Many have said that they have not been with a kid who got that acutely ill. Looking at her now it is hard picture that acutely ill girl with the chest tubes, open abdomen, ventilator, eeg leads, central line, arterial line,NG tube 20 some pumps and hanging bags, foley catheter and four peripheral IV lines. It has been a moving experience for many to say the least.

All of her meds have been ordered for oral doses that will go in her feeding tube. They will continually increase her feeds.

A rehabilitation doctor is coming for a consultation and assessment of Emerson tomorrow. We think it likely that she will be moved to a live in rehabilitation center soon. She is infant like in terms of weakness. We will have to decide on a location soon.

We may get kicked out of this nice corner room and the ICU soon as our girl is no longer high maintenance (ICU standards). I must get back to packing, we've accumulated a surprising amount in 39 days. Many of you texted me yesterday, I've yet to respond as I have been catching up on sleep. I had Emerson the last night of her intubation. She was up all night and not to happy about it either. I hung in there with her for the most part but at one point I awoke to a chocking sound, it turned out to be me, I feel asleep on the rail of her crib and my head must have slipped forward so my neck "rested" on the rail - good times.

Brian