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Dylan Picu - July 7 And 8


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Dear Friends and Family,

We appreciate your understanding of not being able to reply much, esp. by phone right now. We remain very grateful for your support and prayers. After this update, our expectation is that updates will be less frequent...in a word, yes, he's getting a little better generally each day. Yet it is slow.

Moving foward by the favor of your kindness,

Donna and ____

.........................

SATURDAY JULY 7

~8:30 am~

Dylan "woke up" for the first time. He was coughing (yay!) and fighting [ :( ] the breathing tube. Eyes remained closed the entire time, yet he could respond by shaking or nodding head to Nurse Laura. It'd been a long 3 days of no response whatsoever (tho that was the goal and plan).

I told him I was there... and praised him for his very hard work, his great fighting; how loved he is, how proud of him we all are, that everyone is rooting for him.

Then the morphine was immediately bumped up and he mercifully fell back asleep. The goal of that day, to keep him sleeping so more rest for his poor lungs while simultaneously adjusting the oxygen mode so that he's doing more breathing on his own. Dylan has been on 3 "modes" of oxygen reception now, this 3rd is the best yet, set to respond to his very own breaths. The last 3 shifts of nurses have all said he's a strong, healthy boy as regards fighting this.

He woke some on his own that day, fighting the tube once. He was able to respond to (nurse) Laura's simple commands and opened his eyes for the first time.

~evening~

There was a first tonight: it was easy to recognize almost at once when he became restful. So peaceful that I ditched the thought of any further music, reading to him or speaking to him, even to say goodnight. I simply withdrew my hand and tiptoed out as to not "wake" him. Having never seen anyone for prolonged period under these conditions, couldn't help but note that for some reason I was discerning a natural kind of sleep - tho of course I'd seen nothing but sleep for over 3 days.

For the first time since surgery I felt serene and sure in leaving him at night - on his schedule, not because it was time for me to get my own rest.

SUNDAY JULY 8

~6:00 am~

He'd been fighting the tube. morphine increased quite a bit. He's strong and wiley a fighter the (2nd) nurse says. Another first, both she and the resp. therapist say his lungs are beg. to sound like they should.

~10:30 am~

Dr. Hahn gives the plan for the day: he wants him sleeping, no weaning down of oxygen today whatsoever. They want to hold steady as is and give him a day's break. The dopamine is reintroduced; the fevers are still going, another chest sucretion has been taken for culture; a 3rd antibiotic is introduced.

~afternoon~

After consulation w/ med staff and family, I bring Anna (12), Melanie (8) and Mary (7) to Children's. We have a quiet, specific talk before leaving home about what to expect - beg. w/ the "Child Life" staff who will speak to them before they see their brother.

It's a long process...we get acclimated to the hospital: seeing the outdoor fountain/gardens as they wish; going to the playroom where they play a good half hour. They meet Stephanie, she speaks to them, she brings in an IV bag and her craft kit so they can make cards or crafts if they wish.

She thinks it'd be best for M & M to see a pic of Dylan before they go in. She gets a polaroid, talks to them individually. Another volunteer sits w/ the children in the playroom and Stephanie and I first take Anna in, then the younger girls together. Steph also leaves me with each child, alone, to hold them and kind of process the situation.

They then wanted to make cards for Dylan, which they did. Mel made him a necklace.

Lastly, they wanted to see the on site apartment I've been spending the nights at; now they know where I am, and why I am there. It was time to do this. Afterward, we went for food at a fantastic Italian deli and restaurant (big thanks to ___________ for turning us on to Cosetta's).

Donna

..............

PS: I told Dylan today that, incredibly, he was in total charge of what was happening, his body and mind response. That we were following his lead. As soon as he can get the strength to show us on his own that he can breath, out comes the tube. That I'm sorry, it's most unfair...but there it is, son, Godspeed, we'll help you any way we can.

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Hey Donna. I'm sure there's not one of us who isn't thinking of you and your family at this news. I'm sure your strength will see the whole family through!

Arab proverb

'The men are the wool of the tribe, but the women are the ones who weave the pattern.'

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