This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

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.

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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.

Thursday:

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!

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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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The Vacation According to Michael, Part 2

Friday, October 8, 2010

Originally Published February 29, 2008

Michael's Travel Journal -- Day 2: Sunday (Transcribed on this, the following Friday)

Well, it seems that nobody but me got any sleep Saturday night. I heard Mom and Dad say to Grandma and our friend that they had to adjust my humidifier settings last night, including turning it up and turning on the heater. There is something about the dry desert air and we will have to be sure not to skip any more nebulizers no matter what.

We had to check out of the hotel to get to our time share today, so Mom and Dad packed; our friend went to get breakfast for the big people, and Grandma tried to feed me my breakfast in the car seat. Hehe -- I wouldn't eat. She'll learn. It took a long time -- we had a lot of bags and most of them were mine. Mom keeps saying we'll have fewer bags when we leave, but I'm not sure. The first thing Dad did at lunch was buy something called "Klingon Blood Wine" and it looked heavy to me.

So, round about lunch time we went to someplace called "Quarks" (and Dad bought the wine next door). We didn't yet have a stroller, so I got to ride in the Baby Bjorn with Daddy. It was nicer than trotting along in the car seat yesterday. Anyway, while the big people were talking, someone named "Roggle" who called himself a "Ferengi" came to see me. He said he knew all about tracheostomies and that they had them sometimes on Ferengenar too. He let me take my picture with him. But then, something weird happened. Mom and Dad didn't feed me on time. And they weren't just a little bit late either. They were a lot late, according to my stomach. I tried to tell them, but no one listened. Not Mom, Dad, Grandma, or our friend. I didn't know what to do! Finally, Mom looked at me and said, "are you hungry?" And then she opened a jar of sweet potatoes. Sweet potatoes? By mouth? Where was my tube of formula? Well, my tummy was so empty I figured this would do until they found out where the forumla was packed, so I opened my mouth. Strangely enough, it wasn't so bad this time, and it did make my tummy feel better. So I ate 1/2 a jar. Then Mom and Dad and Grandma went upstairs to someplace called "Star Trek" and our friend and I walked around. I liked the flashing lights a lot. But then something weird happened again. They still didn't feed me. After a few hours, we went back to Quarks and I asked to eat again, and I almost finished the jar. Everyone seemed very impressed, but then they FINALLY gave me my formula.

Then some lady called a "Klingon" came around and asked if she was my first "interspecies communication." Dad said no, I had already talked to a Ferengi, and she made some rude remarks about that. But we took our picture together anyway.

Then Dad and Mom and I went upstairs to the bridge of the Enterprise D while Grandma and our friend played the slots. I got my picture taken in the Captain's chair, and it was fun. Everyone said I was so cute.

Something else was happening in Vegas -- every where I went, I seemed to attract some admirers. I thought everyone would want to talk to me, so I smiled all the time, and sure enough, everyone wants to talk to ME! (And why not, right?)

I was also keeping a secret from everybody. My bottom two teeth had come in, and no one knew. Grandma suspected on the plane when I bit on her finger, but it was my secret, and I did it without ever crying. (Although when Mom hit my tooth at Quarks with the spoon I cried.) Now Dad says I have to learn not to bet my teeth. I'm not sure what that means, but I'd better not do it.

After that, we went to the time share. It was a bit smaller than they'd hoped, but it seemed nice. Mom and Dad went to the store, and I had a bath. Then I cried for my parents. They came back, and Mom said I was wired for sound. I told her I wasn't going to go to sleep at all, no sir, not at ... don't rock me ... help ... zzzzzzzzzzzzzzz.

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Michael's Travel Journal, or The Vacation According to Michael

Thursday, October 7, 2010

Originally Published February 28, 2008

Michael's travel Journal, Day 1: Saturday (transcribed on this the following Thursday).

Mom and Dad got me up REALLY early on Saturday. It seems like the very first time that I got up AFTER Mom and Dad. To make it even weirder, they didn't even change me out of my PJs. The last time this happened, we ended up at the hospital, and it HURT. But this time, the car turned the other way, and we went someplace called the "airport". Mom and Dad seemed a bit anxious about what was going to happen to all those bags we were taking with us (there were so many), but a nice lady at the counter took them and said there was no problem. We had to walk through some funny place where they took my carseat and Daddy had to carry me, and they asked a lot of questions about my suction machine, but we had no problems. They took Grandma away for awhile to look at something with her metal knees, but they didn't take Mom away and ask her about her metal spine, so that was good.

In the airport, I finished my tube feed, then quickly threw up. On the airplane (we got to board first) I slept and refused to eat and generally acted like my good sweet self. Mom had me out of the chair for awhile, and you wouldn't believe how many people were on the plane -- more people than I think I've ever seen before. There was a nice man next to Mom who talked to me and talked to Mom about my trach tube. It was fun, but it was NOTHING compared to the airport where we landed. I've never SEEN such colors and people and signs and there were these SOUNDS. I couldn't figure out where to look first. Look at that, Dad! Look here! What's that? WOW! Mom and Nanny Tracie got our bags, then Dad and Nanny Tracie got the van and came back to pick up Mom, me and Grandma. Mom said I was HEAVY because Dad took the carseat with him and took forever to come back. But, I wore my cool sunglasses, and everyone smiled at me.

Things got a little rougher at our hotel that night. We got the formula delivered just fine, and we picked up extra diapers and stuff, and I was so tired when we went out to dinner. We tried to go to Mom and Dad's favorite mexican restaurant in the Luxor, but it closed two weeks ago. So we walked around the floor, and the COLORS -- once again, I hardly knew where to look. But I was so TIRED. I would sleep for five minutes, but then I'd wake up to look around. So, Mom and Dad and Grandma and Tracie took me to someplace called the Miracle Mile at Planet Hollywood where there was another mexican place. This place served the fastest food you'd ever want to see.

Once again, I fooled around with my food and wouldn't eat, but I had so much fun looking around. By the time we got home to the hotel, it was well after midnight, I know. Strangely enough, Mom kept saying it was only 9PM. I just know she was wrong about that. B y the time we got there, I was so wired that I refused to sleep and told Mom I was NOT going to go to slezzzzzzzzzzzzz. (5 seconds flat)

But, the night was pretty bad. I had a lot of coughing spells and my O2 monitor was going nuts (as usual), so Mom and Dad were up most of the night with nebulizers and holding me and just watching the monitor insist that my O2 levels were only 85. (But when we reset the monitor, it would say 97 for a few seconds, like magic, it just wouldn't stay that way.)

I tried to get up when my tummy said "breakfast" but it was still dark, and I was still tired. It was confusing, but Mom came over and said, "Go back to sleep; it isn't morning yet." So I did, and that was the end of my first day of vacation.

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It's Vegas, Baby!

Wednesday, October 6, 2010

Originally Published February 26, 2008

Greetings from Vegas! We tried to download pictures, but Michael left the camera cable in Virginia, so no luck there. Michael wants to show you his pictures of him with the Ferengi, and him with the Klingon, with him on the bridge of the Enterprise in the captain's chair, and him in the Venice canal, but not today.

Michael has adjusted well to the time difference, after only one 3AM hunger attack on our first night here. In fact, Michael is having an UNBELIEVABLE trip. I don't know if it's the dry desert air, or if it's the fact that everything is new, but he is like a whole new kid. The baby that viewed every meal as a boxing match is now chowing stage 2 baby food like it's going out of style. Instead of struggling to get in one pack on his very best day, he's now eating almost one every meal (other than breakfast, which is dramatically improved, but still lags behind the rest of the meals). We've not been pushing the bottle, because we are so thrilled with his desire to eat that we are taking all victories without question. This is day 3 of Michael demanding (and being allowed to refuse) solid food.

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More Coverage Problems -- Originally Published February 21, 2008

Thursday, August 19, 2010

When it rains, it pours. Adam and I were just beginning to decide that this feeding issue is getting a bit out of hand, and we need more professional help then we are currently finding ... with all the time, expenses and potential heartbreak that could bring ... when out of the blue the insurance company calls. Our night nurses have not been recertified, and as of 2/26, we are on our own.

Well, not exactly. We've finally been approved for a nursing program on Medicaid, but Medicaid wages are a fraction of the insurance payments. The nursing agency has some serious doubts about whether they will be able to staff Michael's nights on Medicaid wages, so we might, or might not, be on our own. Obviously we need to appeal this decision, but it is hard to think about that again. One can hope that the nurses will come anyway, but who can blame them for going where they will be paid the most? And, if we don't appeal, aren't we giving up in the face of a significant injustice?

Let's just hope that we really are only 2 months away from trach removal, and that this is a short time problem. I know I've said to many of you that I refuse to get my hopes up, only to be crushed in April if they say, "No," but it is hard not to wish, and hope, and dream that the end is in sight.

Well, we're off to Vegas on Saturday, before the sun rises, if the weather holds. (Great lyrics from the song by the Indigo Girls, "Wood Song".) Wish us well.

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