Tuesday, May 9th 2023
Today was another ‘routine’ day at the hospital. Richard got to spend sometime in the playroom and walked around the unit (floor) a couple times with a little help from papa. Tim from OT stopped by today and Richard really enjoyed playing with sticker book and several puzzles.
His Speech Therapist Juliet stopped by with an observer who is considering going into school for speech therapy. Richard loves these visits and keeps showing improvements in his communications team.
How is Papa holding up?
Papa is now into ‘always sleepy’ phase of hospital bedside life. This normally lasts 3 or 4 days as his sleep patterns and exercise adapts to being at the hospital …. The unexpected challenge that papa has found is around on-site laundry. We did verify that there is on-site laundry before. We did not realize unlike Seattle Children’s which has two ‘family laundry rooms’ with several machines per room, Boston only has one small janitor closet with 2 pairs of washer/dyers. The Unit Director stopped by today and papa brought this up and she said that they are renovating 1/2 of the unit right now (we have been watching them from out window in the room) and that it includes a family laundry room on this floor for the families.
For now, dad is switching to hiking rules for clean clothes… multi-day use. Likely TMI but papa has all hiking style clothing so this is not a challenge and another reason that he is looking forward to going back to the 5th wheel for one night this weekend.
Papa’s elevator friend, John, who’s kid has been on the unit for several months got discarded today. The one thing that seems to be lacking about extended inpatient life that our hospital system is due to confidentiality and to avoid pathogen transmission there is defiantly a feeling of isolation, even when not on official isolation. I am not saying that we need to relax confidentiality and/or attempts to minimize transmissions of pathogens. I instead challenge the entire Children’s Hospital Industry to find better, opt-in, family/parent networking opportunities. I have no idea what this might look like, but perhaps an adult game night every now and then or an intergraded opt-in social network solution into the Parent App are a couple ideas.
A new find!
With the laundry issue Richard ran out of clean clothing from home today and Michael, Richard’s CNA who has been taking care of him several of our days here, asked papa a new question ‘Do you want a gown or a Georgie? A Georgie is a long sleeve and paints jumpsuit designed for kids who have lines and tubes. I actually looked up the manufactory who has a store that you all should check out. Link to the story: https://petitpeony.com/pages/story
