I don't have time this morning to do the post justice, but before I start off on our day of adventure I must pass on a specific prayer request for Grace today: She is scheduled for a bone marrow aspiration. In Heather's words: This includes anesthesia and intubation and all that goes along with that. Please pray for her surgery and for the results. Thank you.

Grace's first day of freedom—or rather, more freedom than she has had in well over a month—went well, for the most part. You can read much more about it here. And see some photos here. The hard part was returning to the hospital for a clinic visit. Boston Children's is great with children in so many ways, but there are some holes, and this was one of them. The poor child had tasted freedom for less than 24 hours when she found herself back in the hospital again, not in friendly 6 West, but in a place not suited for her situation. Because of her newborn immune system, she was not allowed to go to the Resource Room with toys and books, but was confined to the small clinic room with nothing to do but wait, and wait, and wait.

Imagine how she must have felt. Heather says she leaned her head against the door and cried, and cried, and screamed. She had endured all that went before with incredible patience and grace and a great attitude—and now this.

However, Heather was able to persuade a nurse to bring her some books. And next time they will be better prepared; one thing Boston Children's is less good at is communication about what is going to happen!

The good news is that medically the clinic visit was uneventful.

Settling in to life "outside" is taking some adjustment, but is happening. They even dealt successfully with their first NG tube clog.

When Grace woke up, we saw that her food bag was still full! Her NG tube had clogged. Both of us tried to flush it with no success. Jon had a terrible time getting through to the right people at the clinic (and that mis-routing of request ended up getting escalated to superiors.) By the time the right person called back to schedule an appointment to put in a new NG tube, Jon had tried again and this time successfully unclogged it! By the way, the nurse said, "Try Coke; we've had great success unclogging tubes with it," and Jon says that's the first time he's been in a store debating about the medicinal qualities of brand name vs. generic coke....

And here is the heart healing part. Look at this wonderful picture!

Posted by sursumcorda on Thursday, March 21, 2024 at 5:41 am | Edit
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It is disappointing that Heather had to put "her" head against the door and scream until she got a book.


Posted by Jon Daley on Thursday, March 21, 2024 at 10:58 am

Grace's procedure went very well today (results to come later).

What is almost as important from a little girl's perspective, her very dear stuffed monkey, which had gotten lost on the walk to the hospital, WAS LATER FOUND ON THE SIDEWALK BY JON, after some very earnest prayer.

Posted by SursumCorda on Thursday, March 21, 2024 at 9:12 pm
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