Movin’ and shakin’

fast forward button
would be nice trick for real
so would some patience

Well, after the blog tirade and a few days of stomping around the house, and then a few more days of being sad, I am trying to shake the funk from my brain and get something done around here.

We were so upset to hear that Cinci couldn't see Ike for the preliminary tests until September, my husband and I sat down and found a handful of doctors all over the country who we thought might be able to help Ike. There is one in DC, one in Pennsylvania, I think one in Boston, a possible one in Dallas, and one in Houston.

Houston is the closest to us, and we had heard a good recommendation for this doctor, so we called the hospital and spoke with her nurse. I wrote a desperate impassioned email, explaining Ike's entire medical history and about an hour after I sent the email, my husband received a call back from the nurse. She had spoken to the doctor, who responded, "How can I help?"

!!!

Very exciting!

Until we found out she can't see Ike until July. July isn't that far away, but you have to understand that when you're never sleeping, and you're constantly suctioning a trach and worrying and worrying, each day is like two days. At least.

We talked to the nurse again. She recommended we come to see a colleague of the Fancy Doctor – someone who is supposedly equally as experienced, just not the head of the pediatric otolaryngology department. We have an appointment to see her next Friday.

While all of this was going on, we got a call from Cincinnati. They have Ike scheduled for a battery of tests from August 3rd-6th. A lot sooner than we thought! But still not soon enough for my impatient self.

I have to keep reminding myself that it's already almost June. And to get to Cinci, it's going to take a lot of time to coordinate travel. So, really, August 3rd is not that far away. Right? I have to keep saying that.

We are keeping our appointment with the Houston doctor, because it feels like speaking to a handful of highly trained specialists will help educate us. We'll hear differing opinions, hear differing options, and I think that will be good. It will hopefully give us more confidence in what Dr. Cotton says in Cinci, if that makes any sense at all. And then after those tests, depending on what we find out, we can decide if Ike-a-saurus can be safely treated in Houston, or if our best bet is to stick with Cotton. I think we probably already know our answer, but having more information under our belts is very appealing.

All of this news has helped lessen the blow of having to repeat the nuclear milk scan today – Ike-a-saurus was not pleased to be the middle of a baby sandwich again. Twice in one day. He was, in fact, inconsolable.

It makes me fear for the three days in Cinci. So many tests all at once. Ugh. But then, maybe they will tell us something. It is terrifying to think they will tell us something bad, but just knowing SOMETHING will be helpful, right? Right.

The quest to become a face breather is not easy. But at least we're finally starting the quest. Time to stock up on the Xanax. It's going to be a long summer.

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7 thoughts on “Movin’ and shakin’

  1. Sounds like things are moving in the right direction. I hope the Houston appt will (if nothing else) arm you with additional knowledge and strength. Your little man is a lucky guy to have you for a mom!
    In solidarity Kari…

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  2. I’ve said it before and I’ll say it again: Ike’s the luckiest little dino to have you as his mama. We’ll all be here for ya every step of the way this summer!

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  3. It is really really good that you are checking out your options and keeping the Houston and the Cinci appt. I live in Cleveland Ohio with two of the best children’s hospitals around. I worked for one, while a friend worked for the other. The one I worked for would send patients to friggin San Francisco for heart surgeries even though the other hospital (literally right up the street) was one of the best places around for little hearts. Competition in the medical world is a really crazy thing.

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