Thursday, February 5, 2009

Day 2

Not much change today, really.

He didn't want to go to bed last night. He was so tired but just wouldn't settle down. It was 2:30 before he finally gave up.
I was thrilled to let the nurse take his 3:30 feeding. I got more than 2 1/2 hours of sleep at once for the first time in probably 4 months.

I also let her feed him at 6:30, though I got up to pump.

I actually felt a little guilty about it because I feel like it's my job. But I'm determined to take advantage of the few benefits that the hospital provides. (Readily available experts, unlimited access to breast milk bottles & magic blue bulb syringes- and the best part- our snack room has an ICEE MACHINE.)

This morning our pediatrician popped in. She told me she was just here for a social call. Since she didn't admit him, she doesn't need to write orders so she was just checking in. (Have I mentioned that I love our pediatrician?)

She told me she's very glad that I let the nurse feed him. The nurse had reported to her that he did the exact same thing that he does for me- drinks like mad for 15-30cc then just quits. She said that while she believes me, there are always people who think it might be the parent doing something. This shows it's definitely a Robbie behavior.

She said that they'll give Robbie a day or two on the IV meds to see if anything changes. From there we'll discuss a G tube.

I asked if there would be more tests. She said that Dr. GI's notes didn't really explain her plan, but that they might do another upper GI or a scope to see if there's anything unexpected but realistically, there aren't a lot of options.

I told her that I felt like a fool for having the G tube removed almost 6 months ago. She was vehement that there was no reason to feel that way. He was eating great and growing well and thriving. There was no way to know that in 6 months things would turn out this way.

She told me about another patient with a G tube who had it removed recently and how well she is doing.

I told her that I knew that I should count my blessings because feeding issues are so common and in the grand scheme of things it could be worse. She nodded. She added that we could be dealing with a bad brain bleed or any of a hundred other really awful things. "A G tube is nothing." were her words.

She was very encouraging, really. Talking about how we won't have to stress over drop any more. Every encounter with food can be pleasant for him. She really did make me feel a little better.

We did get an OT evaluation today. He did the exact same thing as he always does. (I will give him credit- at least he's not making me out to be a liar.) They were perplexed as well.

I heard the exact same things today that our EI OT said last week. He's got great oral motor skills. But he hits a wall and he's done. They don't know if that wall is when he starts to feel food in his stomach, when it starts to stretch or what- but something triggers him to shut down.

He was very, very sleepy when they came to evaluate him (after having gone to be late, gotten up early and refused to nap this morning, he'd finally collapsed about 2:00) so they want to reevaluate him tomorrow. I told them it's the same whether he's awake or asleep, but they're welcome to come watch any time they want.

So for tonight, we're just hanging out. He's (not) eating and (not) sleeping. I'm (not) sleeping and drinking all the ICEEs I want.


Confidential to Mrs. Spit:


Kim said...

I would KILL YOU for that ICEE right now!! Really!

Okay, maybe not KILL, 'cuz then you wouldn't be there when our kids got married ;o). But I'd definitely fight you for it!

I've been thinking of you guys all day. Hang in there, and drink one of those bad babies for me.

Heidi said...

Oh Trish. I'm so sorry that you and Robbie have to go through all of this.

I am very very proud of you for seeing the silver, or red frozen lining in your cloud. Icee's do make things feel a little better don't they.

love and hugs.

Heidi said...

Thank you so much for the update. Thinking of you...

Mrs. Spit said...

Ok, so Icee? Is a big deal if people are threatening you. . . .

Thanks for the pic.

Thought of you often today. Hang in there as best you can. And let the really, really, really expensive baby sitters feed the amazing Robbie!