Day 845 - ENT Calls 🤙 & Bananas 🍌
Monday, April 24th, 2023
So late last night Dad's business partner, Uncle Andrew, came into town and would be staying with us for a few days.
Monday is always a busy day for phone calls! The morning started off with Mom going in for more blood work. 🤞🏻 Before early intervention therapy Mom had an introduction call with someone that will be having Mom on her podcast next week to discuss being a medical mom and IVF.
📞 We got a call from James' ENT office. It was one of the nurse practitioners. She said she was calling to get James set up for a capped sleep study. After some discussion with Mom letting her know that there has been quite the confusion with this. The last time he was scheduled for his airway evaluation we were told that he would be coming in for a capped sleep study the night before, making it a two night ordeal. But no one from the hospital ever called us that Tuesday to come in Wednesday. Instead they only called us on Wednesday to come in on that Thursday. It turns out that it was because this NP never called the hospital to schedule the capped sleep study because we were already admitted for RSV. Well that explains it! Now that we got the past cleared up Mom let her know that James would not be coming in for a capped sleep study because he does not sleep with a cap because he has severe lung retractions. Mom told her that James sleeps with an HME at night and when we were in the hospital we discussed with pulmonologist about how he should not sleep with a cap. It would be lovely if all of the doctors could be on the same page. So she said she would discuss with the doctor this information and then call us back later today or tomorrow. The fate of James' decannulation now falls on whatever decision the ENT doctor makes. 😞
🥚🥑🍌James tried some new food today. He actually enjoyed Mom's concoction of egg salad made with hard-boiled eggs and avocado. However James is obsessed with bananas. He loves squishing it to the point where the banana comes out of the peel! Well before Mom let him get that far we peeled it and James ate it like an ice cream cone. He hasn't tried to bite anything yet, ut James is pretty much open to trying anything by just tasting it.
In the afternoon Mom got a call that said that her blood work came back from her 4th beta and the numbers went up to 1567 which is a 131% increase! Even though this is definitely what we had been waiting for it's really hard to not be anxious everyday. Always waiting for the results of the next thing and even when it's positive having this thought in the back of your head that something could go wrong. It sucks but there's not much you can do about it. Mom would be scheduled for an ultrasound in one week, one week earlier than normal. 🤰🏻🤞🏻🙏🏻
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