Day 235 - Car Seat Test
Early Morning: Dad spent the night with James and they both slept until 2:30am and then … Baby Monster James was Inconsolable until 5:30am. It seems like gas and secretions. Dad suctioned a bunch and continued to pull stuff out. Dad held him. Dad rocked him. Dad patted him. Dad changed 2 diapers. No sleep for Dad or James tonight …😴
Dad finally began to dose off around 5:30am and the feed alarm began going off. After 5-10 minutes of continued beeping, Dad got up to find the Nurse and saw why she wasn’t responding … she fell asleep at the desk around other people. 😮. Dad watched one of the nurses nudge her when he walked out. Unreal. Pretty rough night overall.
Morning: G-tube bile weighed in with 158 mls output during the past 24 hours. The Premie diaper was 58 mls for 8am output.
Dad clamped at 8:10a for his hour. No leak during the clamp, so that's good. James then had a big poop and is having a solid start to the day. Dad let James look out the window while he read the last few chapters of “Peter Pan”, which Dad did an long Facebook post debriefing the book. (Feel free to check that out!) 😊
GI doctor came by to see James. Dad asked if the time of day would matter for when James gets upset with the clamping or unclamping. He said timing doesn't matter since he's on continuous feed. The discomfort could be Colic, which is common in babies. The solution is to just continue to console. He suggested to put James at 30-40 degrees upright with his right side down. He also said that James has a very soft belly, and he’s pleased with this.
Dad then did trach care and wipe down before beginning the car seat test.
James had to last at least 90 minutes in the car seat to pass. The first 30 minutes were strong. No fuss. Took some photos. No problem. Then … Monster Baby James came through and every 6-10 minutes he would burst out into discomfort. Like a rage from the Incredible Hulk. So the next hour was not as pleasant. We made it through with a pass!
During this time, Mom was inheriting a donation crib along with clothes, sheets, chairs, and toys from a friend she made on a Facebook group. A fellow trach mom in the area. Super nice!
Mom also interviewed our first home health nurse. The nurse kept her mask on the entire time because she said she did not feel comfortable with the possibility of giving us anything. She seemed pretty genuine. She's from Massachusetts. Might be a good fit for Sunday’s to start.
Night: James has been upset since 8pm, around when Mom took over for a few hours so Dad could shower and change clothes before coming back for the night again. James had a GTube leak and Mom had to change the bedding and his clothes. It took a little while, but she finally got him to settle down.
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! 😭
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