Tuesday, February 16, 2010

Change of Plans

After a full day of seizures and a harrowing drive through the snow, we celebrated Collin's birthday with Nana and Grandad up at the farm. He had our traditional peanut butter chocolate chip cake and got his first teddy bear from me and Kyle.

This morning, we headed into Cincinnati early to make our feeding team appointment. The hospital was practically deserted because of all of the snow, so we just walked right in wherever we went. The feeding team appointment was kind of anticlimactic. We already knew that all of his test results had come back normal (!!) and they basically just told us that we're going a good job working with him on his oral skills and that they don't want to do surgery at this time. But what came out of the meeting was fantastic: we were discussing the ketogenic diet with the nutritionist and...

SIDE NOTE/FLASH BACK: Yesterday, when Collin was having seizures, I called the neurology department at Cincinnati Children's to see if it might be possible for us to be admitted for the ketogenic diet while we were up here for our feeing team meeting. I was watching Collin "swim" in his pool, which really just meant floating in a seizure-med-induced haze, and the person I spoke with (who is a delightful woman, I have to say) told me that there was no way we would be admitted and that we would probably have to wait weeks because there was a long process we had to go through before it would be possible. I asked her what we were supposed to do while we waited and she said we would just have to do our best managing with medicine. I hung up and cried for awhile thinking how unfair it was that this was how we were spending Collin' birthday and just feeling discouraged all around. But then I packed for the week anyway and decided I would try to convince someone else to admit us while we were up here.

SO, the nutritionist this morning was really enthusiastic about the ketogenic diet and so were we and when she asked us if and when we might consider starting it, Kyle said, "Yes. Now." She laughed and then I told her that I was serious and had packed for the week just in case. I think it impressed her, because she went and called the neurologist to see if she had any objections and she didn't and wrote the orders right away.

From the feeding team appointment, we went straight to radiology for Collin's esophagram and upper GI study. It wasn't supposed to be until the afternoon, but since no one was there, they worked us right in. Collin charmed everyone and did wonderful with the barium and the tube down his nose and then we went to get admitted and were taken straight to our room. The next several hours consisted of a somewhat horrible IV experience (which is par for the course with Collin - it's like all his veins disappear when he sees a needle coming. They actually ended up having to use an ultrasound to find a vein.), an EKG and echocardiogram to make sure he would be able to handle the diet, some bloodwork, repeating his history and describing his seizures about 94 times to various people, and then starting the diet! He is taking a formula called Ketocal which is perfectly formulated to the ratio of fat, protein, and carbohydrates he needs to get into ketosis. I'm a little sad to watch him eating something other than my milk, but still excited that this might work and allow us to reduce his meds.

Kyle had to go back to Louisville for work, so Collin and I are slumber partying at the hospital for a couple of days - watching lots of olympics, eating crappy food, and cuddling as much as we can. Hopefully, he will tolerate the transition to formula well and this diet will be a good match for his little body. If that's the case, we could potentially be out of here by Thursday. Fingers crossed.

5 comments:

  1. Ummm....did you make that stinkin teddy bear!?!

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  2. Just a little shout out to the breast milk (not to mention the producer and queen pumper!) that has sustained Mr. Collin for the first year of his life! Drink up the new stuff just as well, little buddy. We love you!!

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  3. The teddy bear is adorable; he looks so cute snuggling with it :)
    Here's to being prepared! How exciting that they fit you in that very day. Maybe the snow had some benefits.

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  4. Koodos to you for being prepared and persistent! I am not surprised Collin charmed them. He is adorable! Will be PRAYING for good results. Since the hospital was practically empty, perhaps we should really be thankful for snow??????

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  5. Aimee said...

    What a great picture of your dad and Collin! Anyone would be hard-pressed to say which one adores the other more. AND that is one lovely teddy bear. Was that an Annie Mae creation?

    I must admit I was very nervous to hear that you and Kyle were coming up to Cincinnati with the bad roads but I think we're seeing now why that happened. Hurray for you for being ready to stay and hurray for all the people at Children's that helped this to happen. We're praying for you.

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