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Monday, December 27, 2010

Pictures from our Ohio trip

Here are a few pictures from our trip to Ohio. And by "a few", I mean about 75. :)

Our journey began at 5:30am with a vomit-filled car ride to the airport followed by throrough pat-downs and leaky formula bottles (thank you TSA guy) and then a vomit-filled 3 hour wait at the airport.

Do I look haggard? Because I felt haggard. And don't let that sweet little face fool you. This picture must have been taken during the 3.5 seconds that she wasn't crying/climbing on me/trying to get away from me on our 2.5 hour flight to Memphis.

After a very long and exhausting day of travel, Raya finally sacked out around 11:30pm AZ time, which was 1:30am Ohio time. I was glad we didn't have to check in to the hospital until 1pm the next afternoon!
Her jammies say "Cookies Make Me Happy" on them. I bought them just for the irony factor. :)

Our WONDERFUL room at the WONDERFUL Ronald McDonald House, for which I donated $20/night. And yes, those are sleep number beds. And yes, they ARE as fabulous as the commercials make them seem.
Since Raya's feeding pump had to be turned off at 9:00 that morning, she enjoyed roaming free around the room. Her favorite thing was squeezing herself into the tiny gap between the bed and the nightstand. Then she would get stuck and yell until I got her out. It was fun.

Getting ready to check in to the hospital
One last photo op before getting all bundled up to go outside, where it was approximately 7-10 degrees Fahrenheit.
Here's Raya in her spacious (read:PRIVATE) hospital room playing with the Glow Worm toy they gave her in Admitting. This was while they were still waiting for a crib.
Here she is happily playing in her crib with her Glow Worm.
And here she is approximately 5 minutes later after being weighed & having her vitals taken, which reminded her that she was, in fact, at a hospital and that she does not LIKE being at the hospital. She also decided that she no longer liked the crib or the Glow Worm.

And here she is after 1 solid hour of crying. I finally had to put her in the stroller, tip her back, and move her forwards & backwards until she fell asleep. So much for the physical therapy we've done to fix her torticollis.

After seeing how much she loved having her vitals taken, I knew she'd just be thrilled to have the probe placed in her nose for the impedence test. It even came with a set of "welcome sleeves" to keep her arms straight so she couldn't pull the probe out of her nose. I told her it was better than having them put a doggie cone on her head but she didn't really care to listen to me at that point. PS notice the new and wonderful drainage bag that replaced her little plastic bottle that we hated so much. :) And since she had a 24 hour attendant with her during that test, I went back to RMH and had a peaceful night's sleep all by myself.

Occasionally she had a happy moment or two. :)

This is the famous "O" face. All of our kids have made it, as I'm sure most babies do. It didn't take her long to learn that if she did it for an audience, they would laugh and tell her how cute & funny she was. I thought that the mustache of Duoderm adhesive that was holding the impedence probe in added a nice touch to the O face. :)
Bless her little heart, she really did try hard to entertain herself but it was so hard to play with toys with those darn welcome sleeves on!
FINALLY the probe came out and the sleeves came off and we had a happy child again. :)
And she's so CUTE when she's happy (as opposed to screaming, crying, throwing fits, etc.)
This was after hour #1 of her miserable 2 hour IV ordeal. Because she had to be off feeds for 8 hours prior to her manometry test and then for 4 hours during the test, she needed the IV fluids. This picture was taken after the first person had tried unsuccessfully for about 45 minutes, poking her 3 times while I laid across her body and 2 other people held her hands & feet still. She was exhausted by the time we got done, and look at all the nasty green stuff that drained out of her stomach while they tried to start her IV. I felt really bad for her. If I had known how to start the IV, I would have done it myself.
Luckily, the next morning she was back to her normal self and the whole IV ordeal was just a bad dream. And I had a fabulous night's sleep across the street at the RMH on a sleep number bed.
Then I spent a couple hours between when she woke up that morning and when they came and got her for her manometry test keeping her from ripping out the IV that took 2 whole hours to put in. Turns out she really likes to play with/chew on tubes, wires, strings, and anything resembling tubes, wires and strings.

This was after she miraculously fell asleep on my lap during the manometry test. The big yellowish tube with the black stripe down it is the manometry probe. It has a whole bunch of little tiny water-filled tubes in it and they all have little holes in them at different points in the GI tract, which somehow measures the muscle contractions, blah blah blah. The blue & clear tube is actually an NG tube which they just stuck into the hole in her stomach instead of putting it in her nose so they could feed her formula during part of the test. It was kind of cool watching them place the probe and hook everything up. 

Since we were in a special little room all day for the 6 hour long test, very few medical personnel bothered her (meaning, looked at her the wrong way) so she was fairly happy for most of the test. Except that she got bored because she had to stay still so the probe didn't get disturbed. Try keeping a 1 year old still for 6 hours.

Okay, so it's probably not really called an antroduodenal manometry-o-meter, but close enough. The little tiny clear tubes that you can see at the bottom left of the picture are coming out of that big tube in Raya's stomach, then they hook to the blue thingies in the middle of the picture. From there, they're somehow hooked to the computer that records all the data it's collecting from Raya's body. 

This is where we stayed from 9am to 4:30pm. I was grateful for the somewhat comfortable chair and the tv but would have appreciated better cell phone reception so I could have amused myself by texting status updates to facebook.
It drove me absolutely nuts that I had no clue what any of the lines on the screen meant. The only things I knew were that the top line on the screen was from the tube that wasn't quite all the way in Raya's stomach so it got water on her all day long, and that the red line in the middle was somewhere near her pylorus.
Here's another picture of the whole setup. The probe comes out of her stomach, hooks to all the little tubes on the floor, which hook to the machine, which records the data that I didn't have a clue what any of it meant.

This is what the hole looks like without the GJ tube in it.

Nurse Roberta was Raya's favorite person at the hospital. Especially after she got out her rat puppet. We loved Roberta. :)

After the manometry test was over, it was time to put in a new GJ tube. The radiologist thought it was wierd that I wanted to take a picture of it first but he humored me. The piece on the left is what's on the outside of her stomach. If you look closely, there's a little bump about an inch to the right of the big piece, and that's the little balloon that you inflate with water to hold it in place. The rest of the tube goes through her stomach and into her small intestine.

We had a lovely view of the parking garage from her room. :)
Whenever I see her do this, it grosses me out because it makes me wonder how well they disinfected that part of the crib after the last kid smashed his/her face all over it.
That big beautiful building is the Ronald McDonald House. Even though it was really close to the hospital and I could have walked there in about 2 minutes, I was told to take the shuttle after dark because it wasn't a great neighborhood. Ummm, have you BEEN to Phoenix Children's??? THAT is a not-so-great neighborhood. This place looked fine to me but I obeyed and took the shuttle. With the heater in it. Because it was SOOOOOOOOO cold outside.
Nuclear Medicine: The Final Frontier. Or at least it was for us. Her gastric emptying study was the last test she had to do, and once again, she allowed them to dump 2 oz of formula straight into her stomach and never threw up any of it. She did have a little radioactive spitup once but that was it. I was just glad that this wasn't the same as the one she had done in Phoenix where she had to lay under the scanner for a full hour. This time, they took a picture when her stomach had just been filled with formula and then again 2 hours later, after it had successfully emptied 97% of it. Go figure.
Our favorite GI nurses Roberta and Andrea came back to say goodbye to Raya and brought her a cute little book to play with on the airplanes home. A very sweet patient from down the hall and her mother had given Raya that puppy that Roberta is holding to try and make her happy while I was downstairs once and she cried the whole time I was gone.
And after our little meeting with the doctors, Raya and I packed up all our belongings and everything that wasn't nailed down in the hospital room, and our friend Jarom picked us up and took us to the airport. We really REALLY appreciated him doing that for us!! Raya was a pretty crabby girl by the time our plane left that evening and we learned that there are, in fact, airplane seats that don't recline AND have no windows. That was a miserable 2 hours. The next 3 weren't great either and I couldn't WAIT to get off the plane in Phoenix where I knew it would be warm and go home to my family and put Raya in her own bed.
So that's our trip in photos. :)

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