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Monday, August 17, 2009

God's Work

Hindsight? Why do you have to be 20/20?

Coughing and gagging. These are things that I was told Christian didn’t have. These are also things I was told Christian might never have. Guess who coughs and gags? Christian. Guess who can clear his own throat? Christian. Guess who wishes she had been more assertive and demanded that the doctors try extubation before traching Christian? Christian’s mom. But coulda, shoulda, woulda. We don’t want to go down that road because I have a list starting with July 8, 2009. We can just go forward and Christian is showing that he can do this. This breathing thing. But I never doubted him. I always knew he could. So I’m not surprised that he does well on the PMV. All the RT’s are surprised and excited because they said some adults don’t do as well as Christian. I’m excited, I’m thankful, but not surprised. Now we go forward. Next step is PMV around the clock, then capping, then removing. That’s the plan.

Tomorrow is the Care Plan meeting for Christian. I’ve heard this is where they’ll tell me what they think of his progress or this is where they’ll tell me they’re discharge plan. I’m not sure what to expect, but I’m interested in what will be said and who made that decision that we had to come here.

I’m okay with staying for another 2 weeks, but no longer than that. I’ve met some unusual, interesting, haunting, and extraordinary patients, parents, staff, and volunteers. For the adults that live here that are severely disabled, they really try to keep their quality of life up and running. They do karaoke with volunteers, they hold pedicure parties (of which I was tempted to join), they bring in people with music groups to play music for the patients. It’s really God’s work – to do something for someone for the benefit of someone else. Some babies don’t get to be held. I won’t go into it, but they’re basically supported by machines. There are volunteers who come and hold these babies. They talk to them and tell them they miss them. There are joys and there are sorrows here and this place will change me forever. There are babies that exceed expectations here and babies who are rushed off to the emergency room in the middle of the night and don’t come back. If you ever consider volunteering, visit a place like this. It will be scary at first, but God will get you through it. How do you think we’re managing?

“I have faith that my son will walk, talk, and eat on his own again.” – A mom at Hacienda.

Amen to that.


gavman306 said...


Lucy and Ethel said...

Well said! Volunteers are the ones who sit with my son while I run to the bathroom or the cafeteria. They are the ones who offer to care for ME while I concentrate on my son. My thoughts are with you as you face the Care Plan meeting. Christian is blessed to have you on his side.


maz said...

Good Luck for tomorrow's care plan meeting...will be thinking of you. So great that Christian's cough and gag reflex are getting stronger and stronger. By removing, is that removing the trach completely? Must be quite a place...can't think of the right adjective - a life-changing place as you say. Makes me so sad to think of those babies on their own...I'm going to think of them tonight and send them a little love from me. Hugs to SuperChristian and to you Shauna...

Sarah said...

SuperChristian he is! Well said Maz ;)

Shauna I really believe he will laugh dance and sing before we know it!

That is so sad about the babies who are not getting held :(


lisas said...

super work christian! i'm sure having you at his side is helping speed up his recovery.

that's very sad about the babies. thank god for volunteers -they're a special group of people.

good luck at the meeting tomorrow; i will be thinking of you.
love, lisa

Tracy said...

Please let us know what you would like prayers for. I've been praying for the cough/gag/cough/cry. Looks like God has answered many of those prayers.

Hugs. Christian is so lucky to have such a great mama.

sunflourchic said...

tomorrow when parker and taylor "blow" out their candles they are going to wish for great news at your care plan meeting! we love you!

Cassie said...

He is doing so well! I hope the careplan meeting went well. So sad for those babies that don't have anyone to hold them but for the volunteers.

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