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Old 09-14-2007, 10:28 PM
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FightingForFaith FightingForFaith is offline
Join Date: Jun 2007
Location: Colorado
Posts: 201
Default Update on Faith

Hey guys. Ok so here's an update. The night following Faith's disconnect she had another episode...a few hours later...another one. So we took her in to the Children's Hospital (where we were discharged less than 48 hours prior). They did a bronch and saw a huge mucous plug- an x-ray confirmed that it is in her right lobe. This all happened because the day we got home a rep from apria set up the home vent- the heater was new to her and us. She gave us incorrect information and it only reached 31 degrees. We knew this was wrong and we kept calling, but it took hours for them to figure out how to correct this problem (you cannot dial the temp on this heater) so anyways meanwhile Faith is drying out (yes, we used saline but I guess it wasn't enough...) and that's why she continued to have episodes. THis was all unrelated to the vent disconnect and pretty darn ironic huh? I mean at this point i think we are due to win the lottery but maybe a lawsuit is where we are going to get our windfall (j;/k we'd never do that) so anyhow she is in the PICU now and still working hard (heart in the 180's resp. in the 60's) they FINALLY put her on a dragger (the cadillac of vents if you know what i mean) and she is doing a little better.'s been about 7 1/2 months of this and we are at the point where we don't know whether to laugh or cry. I had noooo idea how intense this all would be- I reallY admire all of you- when I see pictures of your kids and read your posts I think to myself, "they did it with a trach and vent...we can too." Well anyways I am at home tonight (she only has one nurse tonight who is really good so I am going to take advantage of this because 99.9% of the time this is not the case. Alright well thanks guys- you all get some sleep too!!!
Mommy to a little miracle named Faith born 15 weeks too soon. Not so vent dependent anymore....
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Old 09-15-2007, 07:10 PM
Ann's Avatar
Ann Ann is offline
Join Date: May 2002
Location: Phoenix, Arizona
Posts: 5,391

Jen, I'm sorry Faith is back in the hospital. It's a sad commentary on what we've been through with our kids when we feel safest in a hospital environment. I think I know what heater you are talking about -- we just got one from Apria a few months ago -- before that, we had the original heater Jack got when he was discharged from the hospital 8 years ago and it allowed you to dial the temperature, as well as adjust the humidity. I do not like the new heaters Apria has. They tell me they are "much better". Yeah, right! The day Apria puts quality above cost, I'll jump off a cliff. Fact is, they are probably cheaper than the older model.

Anyway, I'm glad you were able to leave the hospital and get some much needed sleep. I hope Faith gets back to her baseline and gets home soon. The first year is the toughest --- it does get better with time.

Ann-mom to Jack, forever 15-yrs old;vent dependent;dystroglycanopathy congenital muscular dystrophy, died peacefully in the arms of his mother on 1/5/2014
Jack's Journey and Then Some
TouchStones of Compassionate Care
The Willow Tree Foundation

“Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true”
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Old 09-16-2007, 11:19 AM
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suzanne2545 suzanne2545 is offline
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Join Date: Dec 2006
Location: Whitby, Ontario
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I hope Faith gets home quickly so you can put this behind you and move on to bigger and better things! You are doing a great job and for what it is worth, everytime Ian and I ask ourselves if we should laugh or cry we always choose laugh. Somehow it makes things a tiny bit easier.

Hugs! Stay strong.

Mom to: Berkeley (June 2002),Griffin (July 2004), and Parker (November 2006) My family blog: Parker's LTP Blog:
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Old 09-16-2007, 04:06 PM
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Whitney Whitney is offline
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Join Date: Dec 2003
Location: Denver, CO
Posts: 3,781

I shall reserve comment on Apria. I think Ann was right to mention the cliff and jumping. I hope she continues to improve. Hugs and get a little rest

Mom to twin boys, Alexander and Aidan born on April 1st, 2003. They are former 25-weekers. Alex was trached from 10-03 to 4-05. Also mom to my lovely new daughter Amelia born August 19th, 2011!
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