Weekends at CHOP are all about waiting. Waiting for the next medication, the next blood pressure check, the next injection. Waiting for the cafeteria to open for lunch. Waiting for the next, unoccupied, elevator. But, mostly, weekends are about waiting for Monday. Nothing really happens on the weekends. While Garrett is getting good care, we always feel like weekends at CHOP are a time when there is no one here who can really make a decision that can move Garrett’s treatment forward. We are waiting for Monday to come.
We were told yesterday Garrett could start weaning TPN (the IV feeds he receives through his PICC line) today. However, the doctors who are treating Garrett over the weekend were not comfortable enough with his numbers to start a wean. Weekend teams, at least the ones we have encountered after being admitted to the hospital in the past, are often more cautious and have a tendency to not want to “rock the boat” in terms of changes to patient treatments. I understand this weekend team's caution as they just started treating Garrett for the first time today. However, each day a wean does not start means another day at CHOP. Barring any problems overnight, Stephen and I are pushing for a wean to start tomorrow as Garrett’s outpatient team seemed to be comfortable with his numbers.
Garrett spent much of the day watching TV and reading. He is hooked to TPN on a pole (and there is a pandemic!) so we are not really free to walk around beyond the room and hall. After two weeks in the hospital, he is physically better each day, but is getting stir crazy and tired of being at CHOP.
CHOP shuts down on the weekends. There are no activities, no live CHOP shows on their closed circuit TV, Child Life personnel has the weekend off, no toys are available from the playroom as the doors get locked at 5pm on Friday... Patients are here over the weekends, why can’t they have access to any fun? So Garrett and I are working on our own fun- scary movies, reading Harry Potter, and trying to figure out a Rubik’s Cube.
The weekends are all about waiting, but come Monday, it’ll be alright…
Lots of songs written about Mondays. Almost there. Hoping Garrett is home soon💟
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