Howdy,
The spitfest continues. Ethan moved on to spitting preferred foods today. Sweet potatoes were everywhere at dinner, peanut butter and jelly was everywhere at breakfast and lunch. Mark is feeding Ethan a snack as I write this...I'm kinda afraid to go into the RMH dining room right now.
This spitting thing is nuts. It's what he was doing the first 2 weeks in the program. We can't go home like this so we have to have a protocol change tomorrow. I have no idea what will change. This kid is one tough cookie. Smart and stubborn. We are in heaps of trouble with this one!
For those of you who are writing comments, I'm actually answering you in the comments. Fran, we did have our appointment with Dr. Duke Cameron, heart surgeon extrodinaire (ok, I know I can't spell...) He was wonderfully warm and friendly! He took Ethan's history, explained his odd heart setup (only 5% of the pop has this), indicated that his rogue artery, which is impinging on his esophogus could be causing his feeding issues and he ordered a CT scan under sedation to get a better picture of his heart. I wrote a blog about this last week, but it got lost when I hit the 'publish post' button and I didn't rewrite it. That's why there is a heading with no blog out there.
We're still waiting on the scheduling of the CT scan. Considering the fact that we only have 4 days left, we may have to do it next month when we come back for a followup appointment or we may do it when we get back to Cincinnati. Not sure if it is a coincidence, but since we went to the appt with Dr. Cameron Thursday we've had 4 automatic calls from Cincinnati Children's Hospital saying they request a cardio appointment for Ethan.
Not much else to report. I'm a little bummed about the number of new foods. Ethan has 8. His buddy has close to 30 and the little girl who left the program the day we arrived had 45. I know I shouldn't compare, but it's hard not to. Their foods are real texture, not pureed. I see a lot of blender time in our future.
Have a great night!
Mark, Molly & Ethan
PS.. Mark just came in and said snack went well. Only 1 spit. That is wonderful!
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Thanks for the update on the heart doc. Ron was just asking me about it and I said I hadn't heard. Ethan is a tough nut to crack. Prayers, hugs and love to all!
ReplyDeleteKeep plugging away, Molly! Ethan will get there!
ReplyDeleteOh, and can you puree these in just any blender? We have a vitamix, which is heavenly. We used to use it all the time for Will's tube feeds...we were giving him real food through the tube for a long time.
I'm hoping for a vitamix. Mark, aka Mr. Budget, wants us to use our Target special until it literally falls apart. We'll be pureeing until the cows come home!
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