Day 300 - Vent DISCONNECTED & James Lifts His Legs to His Chest

Tuesday, October 26th, 2021

Mom has PTSD from the other night. Twice in an 8 hour period James was disconnected from his ventilator. Once was due to the nurse not correctly connecting his circuit from moving it under the railing to over the railing. It was loose and the pressure from the ventilator popped it off. The nurse was in the bathroom, Dad was in his office, Mom was just about to run upstairs for a second because James was calm watching his Blue's clues. Good thing she decided not to run upstairs, because one side of the circuit (blue inhalation tubing) disconnected and fell on the floor. The ventilator immediately alarmed DISC/SERVE which means the ventilator is disconnected somewhere. We only have a few seconds to find out where and reconnect. Besides the sound of the beeping alarm, you hear loud gushes of air and something like a train whistle. It's the most terrifying sound because you know what it means. Mom reconnected him and all was well. What is scary is that both the nurse and Dad heard the alarm but just assumed that Mom was nearby. Now for the rest of the day Mom would be on high alert, every time an alarm would go off Mom would run to the crib.

That night around midnight, the same thing happened. The loud sound of air pressure with a train whistle. Mom jumped off of the bed that lays next to him on the floor, except this time it was dark. It's much darker than the hospital in our home. Mom ran to the other side of the crib to turn on the light. It wouldn't turn on. Mom screamed for Dad to come down. She didn't have time to figure out what was wrong with the light. She ran back to the other side of the crib where the ventilator was disconnected still screaming for Dad to come down, but she couldn't see anything. Mom just started grabbing his circuit tubing and managed to reconnect him completely blind. Dad came down and then Mom felt sick to her stomach and almost threw up. It is the scariest thing to think you can lose your baby so quickly. What had happened was that James must have grabbed his circuit thinking it was his pacifier. The stronger he gets the more often things like this will happen.

James has been lifting his legs to his chest which is new! Next will be to reach for his toes!

Tomorrow James gets another physical therapy evaluation from a PT with early steps. Mom has been working on getting this setup since July. It's a government program which is the reason for the ridiculously long process.

Today our Tues, Wed nurse was here and she is getting worse. Completely useless. Mom has to handle all of the care. She doesn't understand how to do anything and doesn't really pay any attention to James. On her phone all day. Dad doesn't think we should keep her around. Weighing out the pros and cons, there are a ton more Cons especially since she has had James 11 times and still isn't picking things up. There are just too many times where there's a lack of social acuity (which is something we can't train on). For example, talking loudly (yelling) on speakerphone while you are standing next to a sleeping baby, watching the mother do your entire job while you talk incessantly about your life and other patients which is a HIPAA issue. If the only time James is sitting up or doing any type of physical therapy is when the mother is doing it then it seems like we don't really need a nurse. 

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭