Day 785 - New Backpack 🎒 & Evening Call from the Pulmonologist! 🤳🏻
Thursday, February 23rd, 2023
Most of the photos explain themselves. James scooted all around today. He is pushing furniture out of the way and climbing over us if we're in the way! Today his new mini infinity bookbag arrived. It's actually made by Moog which is the brand of the feeding pump, so it's adaptable. It's also extra tiny because it's meant for little ones and only to hold their pump and feeding bag. We are going to start with with James wearing it while it's empty. The next step would be to just put the pump in by itself. That is going to be a little tricky considering James is on a continuous feed and we don't have a backup pump. 🎒
☎️🤳🏻 In the afternoon Mom took a nap with James for maybe 20 minutes. Of course during this time this is when the pulmonologist left a voicemail asking her to call back. When Mom did call back the office let her know that he would be unavailable for the rest of the day because he was at the hospital. 🏥 Mom told them that she would make sure her phone was on and would be buy it for the rest of the day. He ended up giving us a calling around 7pm on his drive home. It was about a 20 minute call. Overall we went over James' sleep study results and what we think next steps should be.
🫤 His sleep study results were so-so. They're obviously looking for several things so it's hard to just say it was good or bad. One of the things they look for is how many respiratory events they had, which are like sleep apnea episodes. The recommended "guidelines" say children can only have one episode, whereas adults can have up to ten episodes during the sleep study. However, the pulmonologist does not go by these numbers though, because they aren't realistic for kids with BPD. He would like to see less than 5. James only had 3, which is good. What wasn't good was that James supposedly was under 90% oxygen saturation for 30% of the night and at one point went into the 70's. That seemed really odd because 1.) The tech never turned on the oxygen and 2.) James never desats like that at home on the ventilator. So it turns out the technician would only turn on the oxygen if James was under 90% for more than 10 minutes. The fact was he was going up and down the whole night. Allegedly! 😂 Mom still doesn't believe it. The pulmonologist was also perplexed about that. He let Mom know he didn't have a whole lot of faith in sleep studies and explained that they do them because if everything goes well then the sleep study is a definite confirmation. However if things don't go well that doesn't necessarily mean things are bad. James still has an obstruction in his airway and it's called the trach. So we won't really know how he does until he gets it out. We left the conversation with the pulmonologist saying that he would reach out to ENT to discuss what the next steps should be.
Mom did get clarification from him that he would not need to be present for the airway evaluation next week in the OR. That would be ENT only. Mom also asked about James sleeping on the HME since he is capping all day and he agreed that is the next step.
So that night we put James on the HME instead of the ventilator. This was his first night at home off the ventilator. He ended up needing suctioning every hour just like he did during the sleep study. Mom thinks that maybe this will get better after he spends more time capped during the day, since capping forces them to handle it on their own. James' oxygen was between 95-98, staying mainly at 96 the whole night on zero oxygen! So who knows why the sleep study showed him dropping. Maybe it was just a bad reading. 🤷🏻♀️
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