Day 243 - Reglan Elimination, New Rash, & Lots of Diapers

Monday, August 30th, 2021

Morning started off with a new floater nurse with 27 years of experience. Very nice but... She asked Mom if we were clamping the G-tube. Mom explained that we aren't clamping that at all right now until we get off the Reglan, his GTube is venting 24/7 into a diaper. Mom stepped out to use the restroom while she gave the 9am meds. Mom came back to see the bed flooded and everything flowing out of his stoma with his G-tube clamped. The nurse took the preemie diaper off the G-tube, pushed all his meds including ibprofen via his GTube and then clamped it. 🤯🤦‍♀️ Bed is soaking. She literally just asked right before. And then instead of taking ownership, blames the night nurse for not informing her. So great start to the day. In the hospital, if meds are spilled or wasted they typically do not allow them to be readministered since they don't know for sure how much the patient absorbed.

James received a new pillowcase made by a volunteer and his first baby hospital gown. You'll notice that in a lot of picture James has a wet diaper. Possibly from the Reglan (?), he has been peeing non-stop. As soon as we get a new diaper on him he goes. We will most likely need to get a urine test done to see if there is an issue. 🚼

He also has a new rash on his chin, lots of small red dots that just showed up. We are thinking it's the antibiotic since that is the only new medication recently. 🤷🏻‍♀️

🪥 James got his gums brushed and they didn't bleed this time because the nurse was pretty gentle and Mom was watching like a hawk. Dad read the Giraffe books we just received in the mail from Great Aunt Irene!

👨🏻‍🍼 Dad patted, held, rocked, and comforted James from 3:30p-8:30p and then finally decided to give Tylenol. Heart rate was only 140-160 and respiratory rate was 50-60, but James was restless and fighting a much needed nap. It was a rough night for everyone. 😳

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! 😭 We will continue to collect submissions throughout the next few weeks as our hospital stay has extended.