A Lil' Boy's Journey to Live….

Update …  Riley has been making Great progress on the Trilogy Ventilator. On Monday May 20th his daytime settings were reduced to just CPAP. We have been able to leave the cuff down on the trach 24/7 for about the last week and a half but Now there is No PEEP ..  No Rate .. No Pressure Support .. Nothing but CPAP. He still has some support overnight with the vent but this is All Wonderful progress!
On Thursday May 16th Riley’s trach was able to be downsized. Prior to the downsizing there were many attempts to use a Passy-Muir Valve. This one-way valve attaches to the outside opening of the tracheostomy tube and allows air to pass into the trach, but not out through it. The valve opens when a person breathes in. When the person breathes out, the valve closes and air flows around the trach tube, up through the vocal cords allowing sounds to be made. Since Riley’s trach was larger every attempt with the Passy put him into major distress, but after downsizing … Riley has found his Voice! He is a Chatter Box .. seemingly making up for all the time he was silenced!
Assuming Riley continues to progress the way he has over the last few weeks the Hope is to Decannulate before discharge! Decannulation would be removing the trach! Huge!
Please continue to pray that things keep moving the same way! Riley had a really rough landing as Dr Kreindler says. It took him many weeks before he had all of his wheels on the ground. He is still dealing with some GI issues but the Dark time has passed! The thought of ever returning to such a place is terrifying!
Thank you to Everyone for being a part of our Warrior’s Journey! Everyday Riley is Beating the Odds .. ♥

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Comments on: "♡ Riley is Making Great Progress ♡" (3)

  1. Reblogged this on Gods group and commented:
    Praise the Lord for Little Riley’s progress !!
    Blessings in Christ, bruce

  2. Pinky y Luis said:

    Thanks God for everything… I love tht part: “Riley had a really rough landing as Dr Kreindler says. It took him many weeks before he had all of his wheels on the ground.”… I wish him the very best … lots of love…. ♥♥♥

  3. I am beyond excited that Riley is on the right side of the track now, he is so little and yet soooo strong!!! God bless Riley and his family! Lots of love from Jilly and Joy!!!

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