Day 623 - The Best News Ever!
Wednesday, September 14, 2022
James had Early Intervention therapy and James again cried the whole time. He kept turning around to look at Mom and just wanted to be held. as soon as Mom put James back in his bed he grabbed his pacifier put it in his mouth and grabbed a bean bag and threw it over his eyes. He was tired! 😩 😴 While he was taking a short nap Mom starting packing up to leave for our pulmonology appointment.
When we arrived at the office we waited for a while in the lobby and James was doing fine. However as soon as we got back to the room James became emotional and started crying. It's almost like he knew he would have his 2 synagis shots and end tidal C02 reading. We spoke to the doctor and let him know we wanted to be on the same page with starting trials off the vent and that James was doing great! So put off the shots until the end of the appointment. Then we received excellent news at our appointment! The pulmonologist wanted to decrease James' PEEP to 5! He had been at a PEEP of 8 since February 2nd, so we had been waiting for over 7 months to lower his PEEP! James did a two minute trial off the ventilator and off of oxygen! He did great! Then we got the okay from the pulmonologist to start doing trials at home too!
We let the doctor know that James was only on a ⅛ liter of oxygen and he said "it sounds like he can come off of it". Mom asked him why some babies only on nasal cannulas go home on 1/16 liters or sometimes 1/32 liters of oxygen and he said he didn't know why they would. Researching through FB groups, Mom found that some doctors only wean oxygen until ¼. Every doctor does things differently and every hospital has their own protocol. The important thing is that you feel comfortable with the team you are working with and we love our pulmonologist!
Changes today:
- Decreased PEEP to 5
- Starting trials off the vent: 10 mins 2x/day for 1 week then 30 mins 2x/day for 3 weeks then follow up pulmonology appointment
- Continue to wean off oxygen
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| Playing with his airport. 🛫 Did you know Lovevery "people" are the same size as vintage Fischer Price Little People? |
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| Waiting in lobby... |
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| Song for Littles is the best distraction for him! |
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| First time ever waving! 👋 |
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