Day 234 - Room-in Part 2 & Room Change!

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 tub. They then handled trach care and changed his ties without any RTs or RNs in the room, since this was part of their room-in test.

Right after we finished our Room-In we were asked to change rooms. 😮 We are getting discharged on Tuesday and they had us move rooms because of covid. Almost every room in our section was turning into an isolation room for covid, so they moved us down the hall to a safer section! We think they more or less they needed our negative air pressure room versus "keeping us safe". But we didn't have a choice either way. Dad made a trip home and pretty much took like 90% of our items to the house so that way on Tuesday we don't have to pack up much. It feels like a bigger room, maybe it's because we took almost everything home already!

G-tube leaked everywhere during 8pm clamp.

Then the Night RT wanted to argue with Mom about continuing the Room-In until they are discharged, because she said we needed the practice. I think she had mistaken us for parents that are not Hands-On, for parents that are not there 24/7. Mom explained that she could do the nebulizer treatment for her if the RT didn't want to but the fact is we will not have the same setup at all at home (a different heater, a different nebulizer), so it's not practice as much as it is Mom helping out the RT with her responsibilities. Night shift is rough. 2 more days!

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! 😭