Tuesday, September 20, 2011

Carrie and the no-good day

Today was a Children's Hospital day. I've yet to experience one of those that didn't leave me feeling emotionally drained and exhausted.  Today the emotional tiredness started as soon as I woke up. I was confused, but then remembered what was on our morning schedule.

Don't get me wrong, I love Children's Hospital and the amazing staff there. Everyone we've ever interacted with has been friendly and welcoming and supportive.  But it's hard to go there with a sick kid. And it's even harder to see how many other families are there and see kids that are obviously not doing well. Every parent in the building has the same look- hopeful about a solution, but also a look of tiredness.

Finally, after months and months and years of Ethan not eating and trying every therapy available and attempts at high-calorie foods and supplement drinks and even months of Vivian sitting next to him and showing him how a "normal" kid eats, Ethan has actually lost weight since his 4 year well-child appointment. My 4 year old weighs in at 27 pounds. So today we made the decision to go ahead and have a gastric tube placed. This is going to mean surgery in the next few weeks, then another in three months.  I'm overwhelmed and sad, but also know that we have done EVERYTHING in our human power and we've all prayed our hearts out, but the solution was not what we hoped.  I'm so grateful to have a solution at all though, that I'm okay with this.

After Ethan's appointment, we came home to wait for his school bus.  Yesterday it was about 30 minutes late, but it was the first day and the driver assured me that it was a fluke. Today the bus was 90 minutes late. It finally showed up 10 minutes after we'd given up and gone in (since Vivian was having a total nap-needing toddler melt-down outside).  25 minutes after the actual start of school.  I momentarily thought about running Ethan back downstairs, but two hours on the bus for 90 minutes of school just didn't work for me. So I unexpectedly had a preschooler home all day, and a very disappointed one at that.

I reassured him that tonight would be fun, that we were going to enjoy a gorgeous Seattle night and have dinner on the beach with our church friends. Our gathering with them started an hour ago.  I'm sitting in my pjs on the couch, and the kids are in bed. Daniel's still at work, so that outing got canceled at the last minute too.

I think the kids are dealing with all of today's stresses and disappointments better than I am.  However, Glee is on tonight, and that almost never disappoints :) Bring on the wine and the great television!


Lizzie said...

Ugh, what a day. A glass of wine is definitely in order. I'll call you as soon as we're back in town. xoxo

Andrea said...

Sorry to hear that Ethan Need the feeding tube. I will keep you all in my prayers.

I hate when you have to cancel plans you've already told the kids about...

Healthy Branscoms said...

Hang in there Carrie! I will be praying for Ethan! :(