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A Plan for Decan -- Originally Published March 5, 2008

Friday, February 4, 2011

Hey, y'all. We're taking a quick break from Michael's travel log to bring you some medical news. We took a trip to see Dr. B________ today. Dr. B is the pediatric ENT that Michael sees for trach-related monitoring, and he was the next step on the process of eventually getting this trach tube out of our little man.

Well, good news. Dr. B sees no reason why Michael can't be tested for decanulation ("getting the trach out"). The current plan we are working toward is to have Michael checked into the hospital PICU (pediatric intensive care unit) for a couple of days in April. While there, he will have a bronchoscopy and have his trach capped all day and night (possibly for two days) to see whether he can handle it without problems with his 02 levels or his CO2 levels.

Anyway, Dr. B sees no reason not to proceed. It was really a quick and uneventful visit, with no big issues. Ultimately, the decision is Dr. Pulm's, but Dr. B's attitude was "He has to bite the bullet and do it sometime." He also told us we were in great hands with Dr. Pulm, which we already knew. We discussed for a few seconds intermediate steps like downsizing or something, but again, the approach seemed to be to just "go for it" and give the little man a chance to prove to us what he can do. Tongue control may still be an issue during sleep, as Michael's airway is still small, but Dr. B says that it is amazing what the body will know how to do to protect itself.

Interestingly enough, Dr. B says that there may be a possibility of doing the test by removing Alex's trach altogether rather than capping. As he pointed out (and we have pointed out many times), it's hard to breath with a small airway and a big ol' tube down your throat. Per Dr. B, "if there is a problem, just put the trach tube back in." We have a funny feeling that Dr. Pulm won't go for that idea, but we'll see. We go back to him next week.

Finally, on the medical note, Dr. B took a look at what we think might be a small fistula (hole) at the part of the mouth where the hard palate meets the soft palate. Like us, he isn't sure. There is a dimple there, but no one can tell if it goes the whole way through or is just a dimple. Either way, he isn't worried about it (and neither are we). It is what it is, as we figured he would say.

And, on the food note, Michael keeps eating more and more solid foods daily. What a champ. He has actually eaten a whole jar in one sitting, and he is getting better every day. This is one thing we are GLAD didn't stay in Vegas.

More from Michael's travel journal tomorrow.


The Vacation According to Michael, Part 4

Thursday, February 3, 2011

Originally published March 4, 2008

Before we get to today's travel update, I just wanted to let you know that we have been re-approved for night nurses until March 12th. Oh, and Michael continues to eat more every day. Also, tomorrow we go see Dr. B________ as the first step in determining whether Michael will be allowed to take a sleep study next month and maybe get his trach out. As always, thanks for your support. Now, back to the program.

Michael's Travel Log, Day 5, Wednesday, transcribed on this, the following Tuesday:

Well, the O2 monitor is everyone’s least favorite piece of equipment. When I sleep, it always says I’m not breathing well, but the doctors say its lying. Dad hates it, and our friend threatened to throw it into the pool. It was going off about 4x an hour, and at least 1x an hour, someone has to get up and fix the cord, or empty the water from my hose, or re-attach the sensor on another spot. Well, finally on Tuesday I had a great night – my levels were 97 or above all night long (where they probably always are, just the dumb monitor can’t figure it out). I think Mom and Dad finally SLEPT, which is a good thing because I like it when they are well rested and happy. They play a lot more that way.

I got to stay at the unit today with our friend for the afternoon, yay!!!! I like that. Mom and Dad and Grandma went off to have some fun. Our friend told me all about the exhibits she had seen that morning, and it sounded really cool … medical dissection, the Titanic … wish I had gone. (Or maybe not – I’m not sure I understand it all.)

I understand that Mom had a good day at the slot machines in Treasure Island today. I had a good day in the hammock with our friend and all by myself. It was my very first hammock. Our friend has such neat ideas.


Today we went to Circus Circus, a kid friendly casino. I liked it, but I slept, so Mom and Dad said, “what’s the point?” and went to the Bellaggio. We had to cut things short because Mom and Dad and our friend were going to see “O” and I got to stay with Grandma. From my perspective, this is getting routine. Up in the morning; off to see more shining lights; funny restaurants; home to sleep. Our friend had a big day, though, hitting a couple hundred dollars on the slot machines, lucky dog. Wish I was allowed near those slot machines. I would bang those buttons something fierce!


The Vacation According to Michael, Part 3

Wednesday, February 2, 2011

Originally published March 3, 2008

Michael's Travel Log, Day 3, Monday 2/25, transcribed on this, the following Monday:

The morning started out slowly – it took awhile to get going today, what with still trying to figure out where Mom packed everything. Somehow her cell phone got lost from the old hotel to this new time share, and she wasn’t very happy about it. She was also using her Blackberry to talk to folks at work (I thought we left them behind at home!!!!) She decided to have a “conference call” at 9AM, so Dad and I had a nebulizer and had some breakfast. I ate better than any breakfast before. Then all the big people took me to another breakfast at IHOP, where Mom and Grandma split two breakfasts, and there was so much food on the table. At least, that is what Grandma said when she asked someone to roll her out of the restaurant, but I don’t know. I just slept through the whole thing. Next we went to the grocery store to pick up some necessary stuff (like soda and baby food and napkins and donuts), and while Mom and Grandma were in the store, Daddy and our friend made me try my PMV in the van. HEY! I thought we were on vacation! This thing is a lot easier when I can watch the bunnies of Bunnytown (and Miss Pinky Pinkerton, the Super Silly Sportscaster on Bunnytown – she’s so pretty I have to smile every time I see her.)

After all that, Mom, Dad, Grandma and I went to Venice. I mean, we went to the Venetian. It LOOKED like Venice. I got to walk around all the canal stores with first Daddy, then Mommy. Daddy kept telling me that he was going to figure out a way to get my picture taken with a showgirl – whatever that is. That sounds okay to me – I’ve been flirting with lots of girls on this trip.

We went on a boat ride outside in the canal. Mom and Dad thoroughly embarrassed me by changing me and making me moon the strip before getting into the boat, but that was happening to a lot of babies all around Las Vegas, so I just decided to smile and go with it. The boat driver sang to me – I didn’t like it the first time, but the second song was pretty cool and I tapped my feet and grinned at everybody.

Finally, after a big day, I got to go home and hang out with our friend. (Whew!) Mom and Dad and Grandma all went out to dinner with some friends and I wasn’t allowed to go. But that is okay, because I got a chance to play games and sleep after skipping all my naps.

Michael's Travel Log -- Day 4, Tuesday:

Today I had it. We all went to Excalibur and had brunch at a cafe. Mom kept looking at that Blackberry thing again. She did that for a little while at the Venetian, too, darn her. And, she fed me at the cafe while I was hungry, but it took her a long time to figure out that I didn't want what she was feeding me -- I wanted the other jar. I wanted to eat green today, not orange. How could she not know?

Later the grownups kept taking turns playing the slots and playing with me. When it was Mom's turn, I decided to take matters into my own hands. She was burping me on her shoulder, and I spotted the Blackberry. It was in the chest pocket, right below me. So I went for it. BLAAAAHHHHH right down the pocket. I soaked it good, and it STOPPED WORKING for awhile, even after Mom and Dad took it apart to dry it off. YAY! Score one for the baby!

After that Mom bought a new shirt and jacket, then we went to New York, New York, where I got scared by the screams from the roller coaster. Then our friend got to go to a basketball game, but she wouldn't take me. I wanted to wait up to see who won the game, but I was too tired.

Monday night was better but not great. My alarm went off about 4x an hour, even on the lower setting Dad programmed, but more on this later. Mom says stop, I talk too much.


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