Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Every Breath You Take

on July 5, 2013

Big news today: Agnes is finally off the ventilator!

The doctors had promised Agnes would get off the ventilator at least once and maybe twice before, and it didn’t pan out for one reason or another, so when the doctor told me the plan was to extubate today and get Agnes off the vent, I was a little skeptical. I’ll believe it when I see it, lady. So I showed up for morning rounds this morning, and Agnes’ nurse was giving her a dose of steroids in preparation for the extubation. Then we waited around…some more…I dozed in my chair…we waited…and the doctors came in for rounds finally! The plan was to have respiratory care folks perform the extubation while the docs were rounding in the room, just in case. So there they were. And suddenly they were gone again! What the heck? Where did they go and leave all their computers behind? I guess there was a minor medical emergency in the next room that demanded their immediate attention. Anyway, they did come back, and the respiratory care ladies showed up, and it was on! They pinned down Agnes the Wiggle Worm and peeled the tape off her face and took out the tube! Then they quickly put on the nose prongs for Vapotherm, a beefed up version of the Plain Jane prongs that just deliver oxygen. Vapotherm delivers oxygen and a mild amount of positive pressure to assist in keeping the airways open. Agnes got a bit of extra oxygen to help her through the transition, but she was down to room air levels of O2 within an hour after the switch. She is getting some positive pressure, and so far her numbers look really good. She is breathing fine with a normal respiration rate, her oxygen saturation is steady in the mid- to high-90’s, and she seems quite comfortable.

She is being more feisty now that she’s stronger and not on narcotics. I sat with her for a long time this morning, and a bit this afternoon and evening, and every time I was there, she kept trying to slide out of her bed through those little armhole doors in the side of the isolette. She would get mad and flail around, and her body would somehow scoot toward the door, and maybe her leg would even flop out. The nurse kept repositioning her, but Agnes was determined.

Agnes also is opening her eyes a lot more today. And now that all that tape is off her face, I can finally see what she really looks like! I saw her as a newborn, but her eyes were mostly closed, plus she’s gained some weight so she looks different. She’s really cute! Her eyes are really dark blue and big, and she has a cute little nose, and I can finally see her cute little mouth. When she starts to sniffle a bit on the way to crying, her forehead wrinkles and she looks really cute. When she cries, she still doesn’t make much noise because her vocal chords are sore from the breathing tube. She makes a dramatic crying face and flings her arms around. All the nurses say it’s a good sign that she cries rather than just laying there not caring what people do to her. She is starting to be appropriately irritated when people mess with her.

We’ve been asking some questions to get an idea of what has to happen before Agnes can come home, and here are some answers:

The physical therapist will come evaluate Agnes and hopefully start working on her contracted joints and poor tone. The occupational therapist will most likely prepare some splints to train Agnes’ contracted finger joints in a more open, relaxed position. The speech therapist will come at some point later to evaluate Agnes for feeding readiness and issues relating to sucking.

The milk feedings through a tube will continue to increase at a continuous hourly rate. At some point, Agnes will be phased to a feeding schedule rather than a continuous drip. Agnes has to be completely off all breathing assistance before they will attempt feeding by mouth rather than through a tube.

It is still possible Agnes will need surgery to correct her recessive jaw. It was mentioned as a possibility right after she was born, but not so much recently. She has tongue tie which they don’t want to repair because of her recessive jaw. The tongue tie is the only thing preventing Agnes from suffocating on her own tongue. If they won’t cut the tie, Agnes may not be able to suck efficiently enough to feed by mouth. In order to cut the tie, they may have to correct her jaw. I’m not sure when all this will be decided.

I think the only issues we know about right now that need to be resolved are the breathing and the feeding. Hopefully nothing else pops up. Things are starting to look a little more positive around here!

Blessed Mary, Mother of God, pray for us! Saint Agnes, pray for us! Saint Maria Goretti, pray for us!

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4 responses to “Every Breath You Take

  1. JeneaSwainston says:

    So So happy to hear that Agnes is doing better and responding and getting more active! Will keep prayers coming for tiny girl Agnes with the big attitude!

  2. JeneaSwainston says:

    So she is on a C-PAP! Just like Great Aunt Jenea! (Continuous Positive Air Pressure) In my case for Sleep Apnea.

  3. Penny Clifton says:

    This is just wonderful news. I can here the joy and strength in your words. Sounds like such a long journey. It’s time for a pause at a “rest stop” for Agnes and her family to exhale and relax before the next phase

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