One year ago, this week, Gabriel was becoming sicker and sicker after the 2nd round of chemo. An this week in March 2010 (a Friday last year) Gabriel was put on the oscillator vent ,nitric, xrays constantly, more and more meds, etc. I called Eric that morning and told him GET HERE NOW. We sent for the kids, grandparents and cousins.Our new friends Becky and Ben (& family) were down the hall. As Gabriel was now on 100% support. We were told when we finally went home from the PICU that it may be a year or two to even think about starting to wean off the vent.
Fast Forward the story to today and 1 year later. Gabriel had several clinic visits, one being with his vent doc. Remember he is now off the vent from 7am ish to 11pm ish. I bring up how his inhaled steroid has helped him come down to a quarter liter on his oxygen requirement. Then I ask," can we wean at night yet or do we wait til next month?" She replies, " Yeah, what do you want to do?" I was was afraid to ask for all night so I mention how a HIPPA mama friend ( I told her who and the story!!!) does every other night. She thinks a minute and says, " NO, Lets do all night every night." (YEAH!!!!!!!) I couldn't believe it. If he shows signs off struggling we go back to the vent and then do a slow wean attempt. An for now on if he gets sick (respiratory) we go back to the vent with pressure support. Because of his back to backCASA PICU visits in the last month.
Today was a long day with clinics, 4 hour round trip, brothers basketball game and 2 hour round trip with that. So I will rest him on his vent tonight. Dust off the trach collar and get it ready for tomorrow night and keep the vent on standby.NO VENT AT NIGHT!!!! JUST o2 and Humidified air!!!!! Praying. Toes and fingers crossed.
FYI...We did not discuss decannulation or not at this visit. Too scared to ask. I know she had a talk with his pedi.
This last year, actually the last two years, we have been on Gabriel's Rollarcoaster. Tickets for sale..... there are some hills to climb, wicked free fall drops and some plateaus. I promise you a white knuckle ride that is not for the faint of heart.
4 comments:
I can't believe how far he's come so fast! I found you when Gabe was so sick! Becky had emailed me about you because Jax and Gabe were so similar! Good luck with no vent. Hoping he tolerates it great!
Congratulations to all of you Amy. That is such great news. And keeping the faith is a huge part of it!! I admire your strength!
So glad to hear that the family is in a better place...there is a reason for your trials....you overcame so much( the whole family)...here's looking towards the future :) ...Hugs and kisses
AMAZING! I love happy endings...:) And we are still pulling for you guys. SO glad we met you and your family. It was nice to have some company in the PICU. Good luck Gabe!
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