P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com
James! Look how much you’ve grown! I love to see this picture of you hanging out with your dad! 💜 You’re doing great little man! Keep up the good work! Grammy Janine ( your Uncle Mark’s mom) Love you!!
Saturday, August 21st, 2021 Mom and Dad finished up their Room-In on Saturday. Everything went really well! The hardest part is going to be preparing his feeds and making sure that those are given on time along with the meds. As soon as you think you have a break from giving him a med you realize that you now need to prepare fortified breastmilk. Preparing fortified breast milk includes thawing out frozen breast milk moving it to the fridge then taking the thawed breast milk mixing it with measured out Similac Advance powder (180ml of breastmilk to a teaspoon of formula). He only needs 130ml though for 4 hours because the CDC regulation is that breast milk can only be out for 4 hours at a time. Currently his continuous feeding schedule is 32 ml an hour so that is 32 x 4 = 128ml (rounded to 130ml). But because we have to fortify 180 ML at a time there is roughly 50 ml left in a bottle we put back in the fridge until the next feeding. Mom and Dad gave James a bath and his teeny little tu...
Thursday, August 26, 2021 3:00am: James was making a new weird choking sound. After 30 minutes of Mom troubleshooting on her own she screamed for Dad to come downstairs. Thank goodness Aunt Robin is a light sleeper she was up immediately knocking on his bedroom door. As everyone came downstairs (except for the sleeping dogs), Mom let them know that James doesn't look good and the pulse ox isn't reading correctly. She already had increased the oxygen to 5 liters (40%) on the oxygen concentrator, which is our max allowance. He’s completely inconsolable, his heart rate and respiratory rate are extremely high. When the pulse ox does pickup it says his heart rate is 190 and the respiratory rate is 100. He is desating and then pulse ox would say everything is in the 40s, which we knew wasn't accurate so we couldn't rely on the machine. We just had to assess him by looking at him. Mom and Dad go through all of the care training that they were taught. Several things we...
Wednesday, August 25, 2021 Early Morning: After getting James settled for the night, Mom posted up on a mattress on the floor next to James’ crib in our living room and Dad slept upstairs. They agreed that Mom will take the first few nights and Dad will take the first few mornings until things get routined. James decided to continue his late night/early morning routine of fighting sleep, which means Mom didn’t get to sleep much at all. She gave him his Clonidine and other meds at 2am and unfortunately the home vent setup creates a ton of water in the circuit which flowed all the way up to James’ trach and nearly water-boarded him. Mom was able to navigate through this and eventually get James to sleep around 4:30am. Dad came downstairs to give James his meds at 5:45am to find Mom just getting to bed. Since James was fighting sleep, Dad held James for a little while to begin the day. With Mom’s coaching, we found a position that worked real...
James! Look how much you’ve grown! I love to see this picture of you hanging out with your dad! 💜 You’re doing great little man! Keep up the good work! Grammy Janine ( your Uncle Mark’s mom) Love you!!
ReplyDeleteThanks Grammy!
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