tunes and tubes

Thursday was a pretty busy day, and Friday is continuing in that vein...

Yesterday started with some medical stuff: Erik’s naso-gastric tube was removed in the morning, which removed a substantial source of discomfort, though left a residual sore throat. Unfortunately, that also meant the end of the mouth swabs, so he’s having a hard time talking until he can drink water again. The tube feedings (started on Tuesday) had ramped up to the target rate, so they took him off IV feeding, and were therefore able to remove one of his IVs--an uncomfortable one near his wrist.

In more fun news, in the afternoon we had a lovely visit with our friend Bianca, who is excellent at making people feel better about life. In the late afternoon, we were also joined by Cameron and my mom, Judy, who brought a few things from home, and tales of our normal lives. Later, our friends Barbara and Chris (my kind hosts this week) came with their teenage son Nacio, who serenaded us beautifully with fiddle tunes from Scandinavia and elsewhere, plus a little Bartok. The music was wonderfully uplifting, and it was great to be able to chat about various things with friends and family.

Although Erik was hoping to have a somewhat restful night (perhaps a couple of 3-hour stretches), he ended up with multiple awakenings by nurses and his own internal discomfort, due to the reawakening of peristalsis. The swallow study this morning had been scheduled for 9:45 all along, but somehow last night there was some received wisdom that it was to be at 7am, so his 5am xray was moved to 4am. Needless to say, he is exhausted today, and is just now getting a nap.

We returned from the swallow study a little while ago, which shows no leaks (yeah!) but also that the "exit" from his stomach is constricted, so they've scheduled a procedure to dilate that tomorrow. If that works, he hopefully can start having some water to drink, finally! They’ve also taken him off his jtube feedings and put him back on IV feeding, to get rid of chyle (lymphatic fluids) in his thorax. One step forward, one step back...

Although Erik has appreciated all your comments of support, he has especially enjoyed fun stories about what friends are up to, or that refer to specific connections he has with people, to help distract from the 24/7 of hospital life. Smiles and laughs are a big help!