Day 871 - Pulm Post Decan Appt 🫁 & Taking Steps 🚶🏻♂️
Sunday, May 14, 2023 - Saturday, May 20th, 2023
💐 We wrapped up our time at Juju's with celebrating Mother's Day on Sunday! Dad got Mom a really cool gift! He had the blog printed out and binded. The first 254 days was over 1,450 pages. It ended up being 3 giant books! 📚 While we were in Jacksonville, James slept in the bed with Mom instead of using the Pack 'n Play. That meant every morning we enjoyed snuggles. 🤗 There are a ton of parents that co-sleep but we have never had that opportunity because James has always been in a medical crib. Every time we have ever held him has been such a big deal! Well this week, every morning James would scoot over to Mom and put his head on her chest. It was absolutely adorable!
Out of the 8 nights we stayed in Jacksonville 2 of the nights James did not require oxygen. That was Tuesday and Wednesday night. We think it was kind of like a kangaroo care situation. James being so close to Mom, he didn't need as much oxygen, just like in the NICU. When we do use the nasal cannulas we now use this new tape we bought from online called Feeding Friends. So far it is the only thing that has worked to be strong enough to hold yet gentle and off on his skin. James is very sensitive to most adhesives.
🛣️ Before we got on the road we met up with someone from a Facebook group and bought one of their Lovevery toys. Even though we had just signed up for the subscription this was a very popular toy that we were skipping because it was in an earlier kit. James loved playing with it in the car. 🟠🟣
🧍🏻♂️ During PT this week James had been standing for the most he has ever stood! He even took a few steps between our set of nugget cushions and a table. We would move whatever was keeping his interest whether it be a toy or the iPad. The most important thing is that James stood in standing.
🫁 The most important thing that happened this week was our pulmonology follow-up appointment post decannulation. We started out in the lobby and this was the first time James really noticed the train that looped around the ceiling. Every time the train passed in front of him he screamed! 😂 James is getting a lot of attention from the other kiddos. They wanted to know what was so exciting. We waited about an hour to be seen by a doctor and in that time Dad ended up having a work call. So Mom met with a new nurse practitioner who we had never seen. It's hard when you've been seeing the same doctor for 2 years and they try to give you someone new who doesn't know your child. The first question out of her mouth was, "I see he was at the ER in January". 😳 Mom let her know that a lot has happened since January between several ER visits for GJ replacements, a coronavirus, RSV, and most importantly recent decannulation. She had absolutely no idea, it was like she wasn't even looking at the right chart. After Mom went over everything again, she went into the hall and asked our doctor if he knew James. He immediately said he would take over the appointment. Our pulmonologist was very excited to see James decannulated. He said when he found out about it a few weeks ago he was telling all of the NICU doctors. We got a lot of our questions answered about our concerns with his need for oxygen post decan. Our pulmonologist said that if he isn't needing oxygen every night like the two nights he did well in Jacksonville he thinks this is going to just be a temporary thing. James is currently dropping to like 92 without oxygen and some kids with BPD will just naturally sat lower.❗Two important things we learned during the appointment: Giving him more oxygen is not going to hurt him or affect his eyes like when he was in the NICU, also not giving him oxygen when he needs it is not going to make his lungs stronger. Overall our pulmonologist said that if it was easier for us to give him oxygen during the night so that the alarms didn't go off, then we should do that so we also get some rest. But every now and then he thought we should let him go, like during a nap just to see where he sats and if he is getting better. That is the only way we would know.
📦 At the end of the appointment we asked our pulmonologist for an order for nasal cannulas (since we had been buying them on Amazon) as well as an order for a portable oxygen concentrator. We let him know that we would be going on a road trip for a few weeks and we really need a concentrator with a continuous flow (not pulse) as well as one that can do lower pediatric flow rates. He said that they would put in the orders, no problem. Mom gave him a heads up that our medical supply company just emailed her this morning saying the portable oxygen concentrator they had for rent was not for pediatrics. Mom had been going back and forth with them over the last few days regarding getting a new oxygen regulator. These are the things that attached oxygen tanks that allow you to open them and get a flow to connect to tubing. Well our oxygen regulator is super old and the washer is worn. When you open the tank it hisses which means it is leaking without the flow even being turned on. It's super dangerous. Our account manager said that she would be sending out the oxygen guy on Friday. He would refill two of our tanks and replace our oxygen regulator with a new pediatric oxygen regulator. The pediatric one will all go down all the way to ¹/32 flow rate.
🚗 On Thursday, after PT Mom made a drive with James to New Port Richey to deliver several boxes of supplies to two trach moms. What was supposed to be about a 45-minute drive there and 45 minutes back ended up being 3½ hours somehow. It was practically like driving to Jacksonville. Normally we would have shipped boxes of supplies but there were several gallons of distilled water, as well as heavier supplies that would have made the boxes super expensive. We are clearing out our medical supplies one box at a time!
Overall this week James' GJ has looked a lot better. We think it has a lot to do with him not getting fed by mouth a whole lot. With the button currently being too big stomach contents will just pour out get fed by mouth. We just need to wait until he can gain more weight. He has needed oxygen every night and during every nap. During his day naps we try not to use stickers but as you can see in one of the photos the nasal cannula just does not stay but when he rolls back and forth.
🚗 🗺️🧭Exciting news! We starting planning out our road trip for June. It is so hard to make plans between James' and Mom's appointments. We will be driving up to Indiana across to Philadelphia and then over to New Jersey. 🛣️ As we finalize dates we will reach out to friends and family. We are hoping we can everyone squeezed in!
🤰🏻 On Wednesday Mom had her last ultrasound with the fertility clinic. Heartbeat was 171bmp! Measuring only 1 day behind. The doctor was very excited for the progress and happy that things look like they were working out! We are officially discharged from the fertility clinic forever! Below is a GIF of the ultrasound. Mom's first OB appointment will be on Monday the 22nd!
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