Sleep Study Results

Two songs played through my head this afternoon: "I'm still alive but I'm barely breathing" and "I'm not a princess, this ain't a fairytale." Because I feel like this and so much more sadness after today's pulmonology visit. Tucker had a sleep study last weekend, he seemed to sleep very peacefully, but I knew it would not be good. Tucker's lungs have always been his big issue, and it took him a long time to get off of the vent at night. He got off of the vent in March 2009 and got his trach out in November 2009. We had his Naked Neck party in July. So today the dr said Tucker's sleep is very bad, he does not get restorative sleep, meaning his brain is not resting. This can really explain his neurological symptoms; he has always had these sleeping problems, but the hope was that getting his tonsils and adenoids removed would help. With his mito diagnosis, we knew that proper sleep and rest are SUPER important, life-saving in fact, so we know that he needs to get good sleep. I went into this appointment knowing that we would probably leave with a BiPap machine. Most people with sleep apnea get a CPAP machine, but people with mito do not have enough energy for the CPAP machine. They do better with BiPap, which Tucker was actually on through his vent for over a year. The doctor said "surprise, surprise" Tucker is too complicated for just a BiPap machine. He very likely wouldn't keep it on, which would make it ineffective; plus his oxygen levels are good at night, so he doesn't need just extra oxygen. The dr said there are 3 solutions that he knows of, but he is going to discuss these with the ENT and Dr K in Houston. These are: take out more adenoids (apparently there are more than just the ones already taken out, but they usually are not the answer and therefore are not taken out easily), put him on BiPap, or .....catch your breath....put his trach back in. Dr. T actually said that if he knew about the Mito diagnosis in November, he wouldn't have recommended we take it out.... He said for years Tucker's issue has been his airway, not his lungs....and with the Mito and the low muscle tone, his airway either won't get better, or could even get worse. I told the dr that Chris and I would MAKE Tucker keep the BiPap mask on if that meant keeping his trach out. We want to do EVERYTHING we can to help him rest, but we really don't want to even consider putting the trach back in. As in...if it really happens they may have to lock me up with security so I don't try to stop the drs....and someone else will have to take over the training and trach changing and dealing with nurses and doctors and telling my son he can't swim....because I've had my turn....just saying. There were two "good" parts to the appointment. I was scared that Dr T wouldn't understand Mito and maybe question the diagnosis. It turns out that he does research in the area of neuromuscular biology and how proper sleep affects performce in sports....meaning he understands a lot about mitochondria and energy in the muscle. He also knows enough to realize that he needs to consult Dr K....Dr K said the doctors who call her before acting are the best kind of doctors. So I am glad about that, I would hate to have to switch all of our specialists to Houston, although I have heard Mitoville is very popular (just kidding!). The other good part, finally an explanation for his staring spells. Tucker has episodes, many many per day, where he stares off in space, and no matter WHAT you do, he does not come out of them. We have tested for seizures, but that was negative. With the autism, the neurologist said it could be avoidance behavior, meaning that Tucker stares off to avoid things he doesn't want to do. Which honestly, I could definitely see that as a possibility! But anyways, I had been wondering lately if the staring episodes were a way for his body to try to rest, like he wasn't getting enough rest at night. I learned in psychology class (years ago) about the effects of sleep deprivation on the brain, and how after two days without sleep, the body tries to save itself by letting you "microsleep" while still awake. Dr T said that must be exactly what's going on. The bad part....Tucker has had these episodes for years, even when he was on the vent, so I don't know how much would have to be done to fix it. So Chris and I are crushed, no other way to say it. So are our parents, we have been through a lot, and getting his trach out was a huge burden lifted for us and Tucker. He is talking so much lately, of course only to boss us around! He also loves the water, as in LOVES, like a fish, and I am going to do everything in my power as a mommy to get Tucker some good sleep and keep the trach out.

Naked Neck Party

Wow, yesterday was Tucker's Naked Neck Party, and it was amazing!! This will be a long post...I am trying to write down as much as possible so I don't forget:)

I don't have many pics, I only took a few with my phone. We hired a professional photographer to take pictures of the party, so I will get the disc from her in a few weeks and post them. I am so glad we splurged on that decision, because I wouldn't have had any time to take any pictures, and it was such a great day! I am so glad that we will have the memories captured on film:)

Our family loves to get together, and even when we just hang out it's kind of like a party. At the end of the school year, Tucker's teachers threw a thank you lunch for the parents. When the teachers set out the chips and cokes, Tucker went around saying "party party". Mrs. Mary said he must go to a lot of parties....well he does!

So of course getting his trach out was a big reason to celebrate! We always said we would have a big bash when his trach came out, and we would get a waterslide since he could finally be on one. Well his trach came out in November...not exactly waterslide weather! So then the stoma didn't even close until February, then in April he got his tonsils and adenoids removed....and the ENT warned us that if his own trachea did not get stronger there was a chance his trach would have to come back:( Talk about a major freak-out on that day! But now, 8 months after the trach came out, we can finally take a deep breath (pun intended) and celebrate!

We rented a 17 foot waterslide for the day. We were supposed to have it from noon until 8 pm, but we ended up getting from 8 am-9pm....and we definitely got our use out of it!! It was so nice because Chris, Tucker, and I had it all to ourselves for about an hour. So we took it slow at first, letting Tucker ride with us, then he slid on his own. There was a wading pool at the bottom, so we also just splashed around and played with the water hose. Then Chris's brother Andrew and his friend Clint got on the slide with Chris, and Tucker and I took a break. They went crazy, racing down, and going headfirst. I blew up a floaty boat for them to ride down the slide. Chris had wanted to bring it, but I thought it was way too big to fit down the slide. Chris had seen the slide in person, and he promised it would fit. Wow! They all loved it!! At one point later in the day, 4 kids were on the boat at once.

Then around lunchtime my good friend Lauren and her little boy Wes came over. Wes and Tucker are the same age (Wes is almost 4), and they have always played very well together. Wes has a pool at his house, so he is much more used to water than Tucker! Lauren is expecting a baby in September, so the slide was offlimits for her. Chris and I took turns bringing the boys up and down the slide, and then they just splashed for the longest time in the little pool. They even took turns jumping off of the side into the pool. Well, Wes jumped, Tucker mainly fell! But they both loved it.

After lunch Susan brought Molli, Morgan, and Grace over (my cousins), and soon after that Meagan brought Aliyah over (my niece). These girls are scared of NOTHING!! so I knew they would love the slide. They basically mobbed the slide, running up and down over and over. Molli is only 3 years old, but she went down the slide with no help, no floaties...faster than anyone!

Two of my favorite quotes of the day:

Morgan (she's 10 years old): "Chris, did you get a turn yet?"

Chris: "Yeah, I've been on this all day."

Morgan: "Lucky-y-y-y!!!"

Morgan: "Why don't we do this every day?"

Then the teenagers showed up....that would be my sister Gina (15 years old), my brother Dylan (17 years old) and my cousin Tyler (18 years old). So they had a blast, riding on the boat, diving headfirst, and helping the little ones do crazy stunts. At one point Tyler and Morgan rode the boat together, and went so fast that they flew out of the pool and onto the grass!

Another quote...from Wes....who really enjoyed the quiet time on the slide....

"Mom, I'm getting out of here, I don't like sliding with the crazy people!"

Poor kid, the steps to get up the slide were slippery, so at one point Gina fell on top of him!

At another point, Morgan, Aliyah, and I had this conversation:

Morgan: "so what is this party for anyways? Tucker's birthday already passed."

Me: "It's to celebrate his trach coming out, because that's very exciting."

Aliyah: "Oh right! Like his naked neck, I saw that picture of him" (I sent out invitations with pics of him on it.)

Aliyah: "Did you know I have a naked neck, too?"

Then she looked up and pointed to her neck so I could see!!

My friend Lacy showed up with Josh a little later, and then Christina brought Brycen and Slade (Chris's cousins). Brycen and Josh joined the kids, but Slade is way too little (only 6 months old).

We had the party at Chris's parents' house, and pretty much everything was taken care of ahead of time so that we could enjoy the day. Mr. Ricky prepared the hot dogs and set out the tables for us...by the end of the day we were calling him Betty Crocker since he was such a good cook and party host!

By the time the actual party started, there were about 15 kids....Tucker, Morgan, Grace, Aliyah, Brycen, Molli, Peyton, Cole, Josh, Michael, Samuel, Lily, Julia, Daniel, Sophie....I hope I didn't forget any! Wes had to leave early because they had another party, but he had hours of fun first:)

Tucker's teacher Mrs. Mary came, and she gave him a train set...he loved it, and he sat with her for a few minutes, but he ran back to the slide as soon as he could! All of Tucker's aunts and uncles came, all of his grandparents, and all of my grandparents:) It was such a long day, but every bit of it was fun! Right around 6 (the party was from 5-7), the slide fell down, with all the kids on it! We called the company, and they came out right away to replace a piece that was broken. By that point, though, many of the kids had been there awhile, so the parents got them dressed and ready to leave. Right when it got fixed my friend Kristin arrived with Kamryn and Kinley. They are the cutest little girls, and she had them in matching swimsuits:) By this point only about 4 kids were there, so the girls got to slide over and over. Kinley rode with me a few times, and even Chris....these girls aren't scaredy cats either, luckily!

We got the kids off of the slide and dressed (by this point Tucker had changed clothes about 4 times. He HATES being wet, so I had to change him into dry clothes as soon as he got out of the slide each time). I told Tucker that was it for him, since we were going to let the big people have a turn. While I was helping put Kamryn in her car seat, my mom came out to me. She said Tucker was freaking out, watching the men slide and act crazy, could he put his swimsuit back on and ride with them?

I said "yes, but we are out of swim diapers...just let him wear his swimsuit." Well Tucker was waiting for that, apparently, because he started stripping immediately!!

The guys did NOT hold back...they raced up the steps, trying to push eachother down...they wrestled at the top of the slide, with the winner being the last one standing....they slid down head first....all kinds of craziness. These are 20-something-year old guys, so it was nuts. Jackie and I joined in, as well as Tucker, Brycen, Samuel, and Lily. Tucker's favorite time was when Justin was carrying him up the steps, he slipped and fell, and took down Andrew and Clint with them. Tucker laughed hysterically!! Samuel said "don't you know Tucker should be crying?? That should freak him out!" I told him, "I know! Tucker loves crazy falling and action, that's part of what makes him special."

I finally had enough, and told Tucker that was his last turn. I took him in and changed him and fed him. The guys stayed out another hour, and I'm sure it just got worse!

Chris was on the slide pretty much nonstop all day. He rode with kids, carried kids up the slide, sometimes two at a time!, and even let kids ride on his back down the slide. He is definitely feeling it today! I don't know if he will up off of the recliner at all, hopefully he can make it to work tomorrow:)

One more quote to sum up the day....Once Meagan finally got Aliyah off the slide, they were getting ready to leave, and she asked "so when are we coming back to do this again?"

Haha, we will do it again when Tucker gets his feeding button out! I promise;)