Day 698 - 😁 Phone Call with Our Pulmonologist 📞 🫁
Monday, November 28th, 2022
Mom and James spent the whole day together doing his physical therapy exercises, playing with toys, and Montessori-ly exploring the house. We had a phone call scheduled with his pulmonologist in the evening after he was done his rounds. The goal of this phone call was to speak to him about where James is at and to get clarification on the path ahead. Since we have not been able to schedule an appointment to meet with him and have been meeting with his nurse practitioner instead, we just wanted to get on the same page. The correct page!
The conversation went great! Mom let him know that we were up to 5 hours twice a day off the vent this week (Mondays being our first day of the week)! He was really excited and wasn't upset at all that Mom decided to just do her own schedule. The pulmonologist trusts Mom because he knows that she has done a ton of research. As an example, very early on while we were still in the NICU and it was her first time meeting him, Mom had a ton of questions and referenced a 1 hour YouTube video on BPD given by a doctor who our pulmonologist actually went to school with! He was impressed that Mom watched the entire thing and understood it. Since then we have had his trust.
A few of moms questions were: Are we okay to move as fast as weaning by 1 hour each week? Yes. Is there any long-term damage that could occur? You don't have to worry if he is getting good stats. How much should we be using the PMV vs the HME? I would recommend only using the PMV for times to practice speech other than that you don't want to overwork him. It's okay for him to be on the HME a lot. He definitely does not need to be on the PMV 24/7. That is not a step towards decannulation. Would we be doing capping? How long is the capping period? That is a very short window right before decannulation. Should we be weaning him off the vent for sleeping next? James is already naps off the vent during the day and is doing fine. Let's wait on removing the vent overnight. At this rate, we are looking at decannulation in the spring. We will never decannulate during RSV season, which is the winter months. When the time comes closer we will probably just take him off the vent one night all at once and see how he does, since he is just doing so well. Then eventually do a capped sleep study.
So that was the gist of the conversation obviously not word for word; Mom was paraphrasing. But did you hear the GOOD NEWS⁉️!❓❗ Not only is James getting off the vent completely but looking at getting the trach out in the spring! Originally we were talking about at the end of the summer.
Please note that every baby is different with a different history and this protocol isn't the same for everyone. We have had people tell us that James is moving too slow and should be doing things faster we've also had others tell us that James is moving too fast and there should be concern. (These are typically medical moms making these comments). It's really easy to anyone to make assumptions and judge a situation so it's important to think to yourself, "Do I 100% understand their medical history to be able to make a call as their doctor?". It's a simple, No. Instead celebrate with every milestone big or small because that parent is already stressed enough and has done enough research, trust me.
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