Friday, October 23, 2009


A quick update.

Ethan was admitted Wednesday.  It was a very normal day for him, just his enzyme treatment.

Sarah took over hospital duty Wednesday night.  Ethan started his first round of chemotherapy late yesterday afternoon.  The effects of the preparatory treatment are cumulative.  So there's no real change yet and he's doing fine.   The word from the nurses is that he'll be at his weakest around the period of the transplant next week and for a period of time thereafter. 

Ethan's got a couple more days of anti-biotics, so he's still getting his vancomycin 3x per day.  They're also pushing a lot of IV fluids in since the chemo can screw with his kidney function.  It sounds like he's going to be hooked up to an IV, whether it's saline or medications, pretty much from here on out.  He deals with the IV line well enough, so for as long as his energy holds up that's not a huge thing.

Between medical staff visits, extra diaper changes from the IV fluids, waking up for treatments and other things, Ethan and Sarah's sleep schedule is starting to slip by the wayside.  Hopefully, Sarah will be able to get some naps today.  I've had a couple of good nights sleep at home.  I was scheduled to take over tomorrow night or Sunday, but I think I might go up tonight and send Sarah home, then ask her to take Saturday night, so I'm in decent shape for the Monday-Wednesday shift next week.

Caleb is doing pretty good.  But he's definately noticed that Sarah and Ethan aren't around.  He asked me about Ethan last night, which is the first time he's done that.  We've explained Ethan's metabolic disorder to him by saying Ethan's body isn't processing food correctly.  We've pretty much left it at that, since how do you explain GAG buildup to a five year old?  Last night, Caleb asked why Ethan was at the hospital so much, and was it because the teeth in his stomach weren't working right?  

We talked a little bit about it.  I explained to Caleb that Ethan was very sick and the doctors are trying to help him.  And that this wasn't a usual situation, and that most families don't have a brother or sister that go to the hospital for a long time, so it's okay to be a little confused or scared or to miss Ethan or mom and dad.  And that he can talk to us, or the teachers at school, anytime he has questions.  We're keeping an eye on him too and we'll just shower him with as much love as we can.

A huge thank you to my mother Lilianne for putting in 6+ hour shifts/day at the hospital and cooking up a storm for table and freezer in the evening.  And to Sarah's parents, Bob and Pat, for their daily help at the hospital and allowing everyone to take a break.

And thanks to everyone who has written over the last few days.  We really appreciate your prayers and support!

The marathon has only just started.  So far, so good. 

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