Update on Faith

[FightingForFaith]

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. Anyhow...it'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!!!
Jen