Boo at the Zoo

Aiden's sleep study and results

Well this was quite an experience. We went into it thinking nothing would be wrong, but we got some results we weren't expecting. First I'll describe the study, then the results.

We went to the sleep center at 7pm and got settled in our room. A nurse came in when I started to give him his last bottle of the night and began putting electrodes all over him. There were about 30 or so from his head to his toe. When he was done eating, he was very sleepy so I put him in the crib and the nurse finished putting the electrodes on - while Aiden screamed horribly. I could tell it was very uncomfortable for him - but not painful. (Although kind of painful for me to watch...) When he finally settled down and fell asleep, I went to bed as well.

Let's just say it was a long night. Aiden usually sleeps great. We have a video monitor at home so we see if and when he wakes up or wrestles around. This doesn't happen very frequently at home. But here, anytime he would move to switch positions, he became aware of the sticky things all over him and fussed and cried. And the nurse had to come in and reattach some of them that shifted or fell off, which just woke him up more and more crying would ensue. Needless to say, he didn't get very much sleep (75% sleep rate to quote the test results) - and I got about 5% :)

When he woke up at his normal time of about 6 am, it was over and we were out of there by 7 am.

Now, the results. The sleep center called me this morning and said the doctor reviewed his results and wanted to speak with me in person...I had a gut feeling something wasn't good about that. I explained that I couldn't come in (didn't have a babysitter) but asked if she could scan and email the report for us to discuss over the phone. They did that and the doctor called - I put Ricky on 3-way calling from work so he could hear as well.

She said that it appeared from his tests that he had something known as central sleep apnea. There are two types - central and obstructive. Central apnea, in a nutshell, is caused from a lack of messaging from the brain to tell Aiden to breath. He may stop breathing for a few seconds, then when his oxygen levels dip down, he kind of startles himself awake enough to take another breath. Obstructive would be caused by anatomy (deviated septum, smaller airways, large adenoids, etc.) She said she was concerned because often times central apnea can indicate pressure on the brain. Obviously, this is bad, and something we've been on the lookout for because of his Apert syndrome. Most Apert kids experience pressure at some point because of the closed suture(s), which only requires surgery if and when it becomes a problem for the growth of the brain.

We were kind of confused because just a week ago his eye doctor said his optic nerve looked great which is a good indicator for any pressure being present. And we've been in communication with the team in Dallas on a regular basis to share photos of his head shape and circumference measurements which Dr. Fearon has said all look normal.

So, after talking with the doctor at the sleep center, we had her get in touch with Dr. Fearon. She suggested doing an additional sleep study while on oxygen to determine if he needed to be on it all the time while he slept. I didn't feel comfortable making that decision without Dr. F's input.

She spoke with him and called back to say he wanted Aiden to get an MRI of his brain. She didn't give us any more details so I called him myself to get more info.

Dr. Fearon seems pretty confident that it is NOT central apnea but rather obstructive apnea. The MRI will give us more info - showing us if there is something called a chiari malformation. The way he explained this was that there is a hole in the back of the head that connects the brain and the lower body where cerebral spinal fluid travels. A malformation would mean the brain was pushing on that hole, blocking the flow of fluid and causing it to build up, thus the pressure. Central apnea is often present when there is a chiari malformation. However, obstructive apnea is not usually related to a chiari malformation - so in Aiden's case, if Dr. Fearon is right, we're hoping that the test results were wrong, the MRI shows no malformation and it is obstructive and not central apnea.

We were able to get the 2nd sleep study scheduled for Dallas during our trip down there on the 9th. This is good news because the sleep center there deals with kids with Apert Syndrome all the time. This one here had never tested anyone with Apert (which might be why Dr. Fearon thinks the results were scored and/or read wrong).

So now, we're waiting to hear back when we can get the MRI done. If the MRI shows chiari malformation, we will still be going down to Dallas as scheduled but will meet with Dr. Sacco (the neurosurgeon) to determine a plan of action. His hand/feet surgeries will most likely be put on hold.

If the MRI shows NO chiari malformation, we will go to Dallas, have the sleep study and based on those results continue with the hand/foot surgeries while also having Aiden's tonsils removed at the same time (if it is determined to be obstructive apnea).

In the meantime, Aiden will be put on a nasal canula while sleeping to increase his oxygen levels.

Did I mention this child is high maintenance??? :)

Upcoming appointments and surgery information

Aiden certainly is a high maintenance baby ;) - with all of the appointments we have scheduled over the next few weeks, we're going to be even more busy (if that's possible!) Here's what we have on our plates:

Sleep Study - Tuesday, October 28:
This was recommended by Aiden's pulmonologist and will measure all sorts of things while Aiden sleeps through the night. He will be hooked up to numerous (I'm talking like 30+) little wires from his head down to his feet to monitor brain activity, heart rate, oxygen levels, movement, breathing sounds, apnea episodes, you name it. This information will help us to see the quality of sleep Aiden gets and if anything needs to be done at this point to help promote good sleep.

ABR Hearing Test - Tuesday, November 4:
This is a follow-up exam to see if there has been any changes to his hearing over the last 3 months. We don't anticipate any issues - he seems to hear and respond to us just fine! However he has had 2 ear infections which can sometimes cause hearing loss if they are severe enough and Dr. Fearon (in Dallas) will proactively be putting in tubes during his hand/foot surgery as kids with Aperts tend to be at an increased risk for ear infections.

Swallow Study - Wednesday, November 5:
This will be done by Dr. Morton (pulmonologist) to determine if Aiden has any occurrences of aspiration (fluid entering the lungs) when drinking/eating. He will have to drink a liquid barium substance that can then be watched as it travels down his throat, esophogaus and into the stomach.

Pre-surgery physical - Thursday, November 6:
A full physical is required by Aiden's pediatrician before his surgery in Dallas. Just your run-of-the-mill appointment to make sure he is healthy.

Surgery in Dallas - Tuesday, November 11:
We fly out on Sunday the 9th. Monday will be a full day of pre-operative appointments with the various doctors and surgeons that will see Aiden while we are there. Then his surgery is scheduled for first thing Tuesday. He will spend one night in the PICU at the hospital, then will be discharged to stay an additional night with us at the Ronald McDonald House to ensure there are no complications. If all goes as planned, we will come home on Thursday evening.

So - as you can see we will be very busy for the next few weeks. I truly appreciate everybody's offers to help and if we see an opportunity to take some of you up on it, we will. Keep the prayers coming - we will be needing them!

"Mommy...mess."

Yes, that's right. For the first time, our little ball-of-fire, bundle-of-energy, into-everything-guy is sick. I'm talking curled up into the fetal position sick. It started on Sunday. Normally a chatter box, especially in the car, Ethan was eerily quiet on our 45 minute trip to Kings Island's Howl-O-Fest. We hoped that once he got out of the van and into his penguin costume he would perk up.

Nope.

He was miserable 85% of the time (the 15% was when he played in the bubble machine...see pictures in the King's Island and Farm post on the main page).

The next morning he was running a little fever so I alternated Motrin and Tylenol as told, but come 5:30 in the evening he was whipped. He wouldn't let me put him down. I felt guilty loving the fact that he was letting me hold him (something very rare nowadays), while knowing he was not feeling good. We took his temperature and it was 102.8. He definitely wasn't himself - he didn't respond to our questions or even our tempting him with suckers. We called the doctor, who open until 7pm, couldn't squeeze us in. They said to continue the Motrin/Tylenol and if he hasn't vomitted, to call back in the morning. Ricky called back and pleaded - letting them know that our other son (now healthier than he's been since his first bout with bronchiolitis in July) was preparing for surgery in Dallas 3 weeks from now and we didn't want to risk him getting sick. They said to come on down.

I peeled him out of my arms and strapped him into his carseat. At the bottom of the hill, I heard an odd noise and looked in my rear view mirror to see some of the apples from his lunch making their way back out...in smaller chunks. (Gross I know). Poor thing didn't know what was happening as he's never thrown up before. I pulled the car over and tried to comfort him. "Mommy," he groaned, "mess."

Turns out he has a double ear infection and probably a small stomach bug on top of that. We've had to keep the boys away from each other as much as possible. Please say some prayers that Ethan will get better fast - I want my tazmanian devil back! Also, throw a couple in there that Aiden (and the rest of us) stay healthy so we can keep his surgery date.

Howl-O-Fest and Kinman Farms

On Saturday, Ricky, Ethan and I went to Kinman Farms in Boone County with my sister, her husband Matt, their two girls Lilly and Avery, my mom, and my nephew Andy. The kids had a blast riding the pony, picking out pumpkins, going for a hayride and making smores.












The following day we took the brood to King's Island for their kid-friendly Howl-O-Fest. A good time was had by all (except Ethan...see Ethan's page for details).









Click here for more pictures from the farm and KI, as well as new pictures of the boys from the past month or so.

Jamaica-me-crazy!!!

Wow - it's been a busy few weeks for us. Between our mini-vacation to Jamaica, the kids getting sick, a trip to Kings Island, fun at Kinman Farms and working out the plans for our trip to Dallas - we've been going non-stop!

I'll start with a post about our Jamaica trip. A few months ago I casually mentioned to Ricky that I thought we needed a vacation. With all of the stress we've been under since Aiden's birth I knew we were both running on empty and I figured if we were going to get away, it would have to be before his first surgery in November. So, a few phone calls later we were booked for a trip to Montego Bay.

Halfway to the vacation date, our travel agent called to tell us the resort was "overbooked" and she needed to switch our reservation to a different resort or give us our money back. I was hesitant to just say okay without knowing any details about the new place, so I logged on to the internet to find out what I could. The Sandals Grande Ocho Rios looked beautiful and she assured us that this was a $2300 upgrade from the Sandals Montego Bay where we were supposed to be going. Feeling rushed, I reluctantly agreed, figuring that it really didn't matter as long as it was a vacation.

Fast forward to the day we leave...

We had a connecting flight from Lousiville to Memphis, then Memphis to Montego Bay. I triple checked that we both had our passports, IDs, etc. at the airport. I flipped mine open and noticed that it still had my maiden name. Would this present a problem at customs? We called the travel agency's emergency line (since we were flying out on a Saturday, they weren't open). The thought of being detained in a Jamaican airport's customs department constituted an emergency to me! The verdict - yes, it was a problem. Great - we were in a slight panicked state thinking about having to cancel and head back home to babyville.

It turned out the solution was simple - change the name on my airline reservation (and my boarding pass) to match my passport. And even though this was in fact all we needed to do, I still felt like a criminal who had committed fraud and was secretly trying to board the plane as someone else.

We made it to Memphis and boarded the plane along with several couples heading to get hitched or celebrate their honeymoon. We even met an older couple going to party their (bare) heineys off at Hedonism. And let me tell you, George Clooney and [insert whatever Brazillian model he's now dating here] they were not. I'm still trying to shake that mental picture.

We sat in the plane for 15 minutes or so after the door shut when the captain came on to inform us the plane needed repair. We were deboarded. Wonderful. At this point, although it was only 10am we headed to the bar. (Hey, it was 11am at home...) After two hours and a few exorbitantly priced cocktails the plane was finally fixed and we were on our way. (However even the cocktails didn't ease my heightened fear of flying on a plane that had to be repaired.) It certainly hadn't been the relaxing vacation we were hoping for. We ordered up a few airplane size cocktails after take off and figured it could only get better from here.

Wrong.

Upon arrival to Montego Bay we checked in at the Sandals concierge room and went to help ourselves to the free drinks. The picture had shown a full bar. The reality was a broken Red Stripe beer tapper and cups the size of a thimble. We scooped up two each and headed to the bus. It didn't matter too much as we would be at the beach enjoying all-you-can-drink Daiquiri's in no time. One rickety bus and an hour later we were finally ready to depart to our resort. But not before the driver informed us that he wasn't employed by Sandals and he quite bluntly demanded we tip him right then and there. No worries mon'.

TWO HOURS LATER we pulled into the resort. Ricky went to check-in and I stood out by the bags. I didn't want to let those things out of my sight for fear that I'd somehow end up smuggling some home-grown "goodies" back to the States. I stood there and stood there. And finally made my way up to the lobby to find Ricky huffing and puffing at them saying we just wanted to check-in already. They kept telling us to sit down and wait, shooing us off like flys. What the hell? And why did most of the couples have complimentary glasses of champagne served to them, but not us? We were hungry and angry that it took us just as long to get to our "upgraded" destination as our entire flight from Memphis. And it was dark. Arriving two hours past our original plan, we missed having our first few hours of vacation in the Jamaican sun. We were irritated. A manager came over as we both started to politely make a stink and ordered the poor girl to just get us checked-in. Finally!

We went to grab our bags but were told not to. "This is Jamaica mon' - no worries - we've got it taken care of!" the bellhop said as I eyed him and thought to myself "Yeah, I bet you do." I know, I'm terrible. But remember, I'm an angry, exhausted traveller. Said bellhop disappeared with our stuff as we were ushered on to yet another bus to drive us down to the "Riviera" side where our room was right on the ocean. We got to our room and collapsed on the bed. Ricky went to take care of some business and I answered a knock at the door. It was the bellhop arriving with our luggage. "May I bring it in?" he asked. I said sure and he walked past me into the middle of the room. "Can I use your phone?" Now I thought this request a little peculiar so I asked him why. He didn't respond, instead, he walked past me to the side of the bed and picked up the room phone. He spoke in a different language briefly and Ricky yelled out "Taryn, is everything okay?" Upon hearing his voice, the bellhop hung up the phone, but walked out on his cell phone having the same conversation. He wasn't even using the room phone. Now I was really weirded out. He slammed the door as he left.

I immediately rang the front desk and asked for a manager, briefly relaying the sequence of events. The manager was at our room in about 2 minutes flat. She was very disturbed by what had happened, which only increased my level of concern. She said under no circumstances are bellhops to come into the room or use the phone. They are also not supposed to have a cell phone on them while working. I asked to change rooms, telling her I didn't feel comfortable in this one. I had such a bad taste in my mouth from the long day that my mind kept telling me the worst. What if he had phoned a friend letting him know a nice young couple with nice bags was just waiting to be taken advantage of. Or worse, it seemed as if he thought I was in the room alone and his abrupt exit when hearing Ricky's voice had me on high alert.

She apologized profusely and agreed to move us but said it would have to be the following day as they were all booked that night. Our hunger pains took over and we told her that was fine, now we just wanted to eat. Having skipped the orientation (the reason for the "sit down and wait" business upon check-in) we had no idea where the restaurants were so she personally escorted us to restaurant #1. The hostess at the desk said there was no room. Try again in about an hour.

YOU'VE GOT TO BE KIDDING ME.

Now I could be wrong, but wouldn't you think that if a hotel manager brought two frustrated guests to a restaurant they would get the message that we meant business? The manager pulled the less than bubbly hostess aside, whispered something, and came back to us with unfortunate news. On to #2. No dice. I was beyond irritated. How is it that we pay for an "ALL-INCLUSIVE" trip and have been unable to get a drink OR food on our first night there?

A different person from the first restaurant tracked us down and said he had a table for us. The manager looked just as relieved us we did. They sensed our impending meltdown and brought us a few shots before our butts were sitting in the chairs. With disappointment on his face, Ricky looked at me and said "This sucks." I pushed the tears back into my eyes, gulped my shot and we agreed to not let this become the vacation from hell. It really couldn't get any worse than this now, right?

Luckily, from that point on it was wonderful. I mean not a glitch. The manager also arranged for us to enjoy a day using a private cabana by the pool (normally $75/day) with cushy chairs, white terrycloth robes and personal butler service. They also gave us a discount coupon for the spa which I used to get a pedicure.

Our much-needed vacation started off a little rocky but we made the best of it and enjoyed ourselves immensely. Even so, it's still not quite the same relaxing getaways that we used to have before kids as we spent a lot of time wondering if they were okay, and between drinks, calling home to check on them. We both agreed that now that we've left the kids for the first time, another vacation is necessary so that we can TRULY relax and not worry :)