A Special Message

Until shortly before his second birthday, Ayden had an NG feeding tube. He received nutrition via tube several times a day for as long as 30 minutes each bolus. We spent a lot of time sitting on the chaise lounge with Ayden in lap, so he would remain still during his "feed." As a result, we watched a lot of Disney television with our son.

On a whim, I saw that a movie, Lemonade Mouth, would be premiering on the Disney Channel. The film promised to have a lot of music in it, so I thought that Ayden might enjoy watching it as he was being tube fed.

Ayden latched on to the movie and the music immediately. He loved it so much that we bought the CD for the car. And eventually, Ayden's anthem, "Determinate," was born.

I can't tell you how many times we heard "Determinate." Ayden loved the song's slow buildup. He and I would look at each other and question, "Ready?!?!" right before rocking out with the band. During the song's rap interlude (performed by Adam Hicks), Ayden would put on his best Adam rapper face and, with attitude, move his head side-to-side. Later, he added "raising the roof." And when the song ended, Bryan and I would hear little Ayden, "Again!"

The song became so important that members of Ayden's Army were putting the song on their iPads and iPods and iPhones so that when they heard it, they would think of Ayden and pray for him.

Bryan and I were infinitely grateful for the song during Ayden's stay in the hospital for his third heart surgery, the Fontan. We used the song to encourage and calm a very unhappy boy. Particularly, I remember that Ayden could not be released from the hospital without first undergoing an ECHO to see how his body was responding to the Fontan procedure. Typically, they put the children to sleep because an ECHO can be pretty painful on a chest that has just been torn open. Bryan and I felt confident that Ayden could do the ECHO without being put to sleep. We knew that if they put him under, any number of negative possibilities could occur that could prolong Ayden's stay in the hospital.

I will admit that when Tony, our favorite ECHO technician, began the post-Fontan ECHO, things were a little dicey. Ayden was having a hard time staying still, and he was becoming increasingly upset. Bryan busted out Ayden's iPad and immediately began playing "Determinate." A calm fell over our child. He even smiled. And he made it through the ECHO.

Here we are a year post-Fontan, and our dear friend, Phil Glasser, is working on a film with Adam Hicks. Phil and his wife, Elise (my best friend), shared Ayden's story with Adam, and Adam wanted to do something to continue to encourage Ayden. As a result, Adam and Phil created a video message specifically for Ayden, during which Adam calls Ayden by name and then proceeds to rap his portion of "Determinate." Ayden's response? Well, watch for yourself!

Adam, Bryan and I are so grateful to you for taking the time to send some love Ayden's way. Your message means more than you could possibly realize.

BROTHERS

 

 

 

 

 

 

 

 

 

 

 

THREE!

HAPPY BIRTHDAY, AYDEN!

 

 

 

 

THREE-YEAR-OLD AYDEN'S GROWTH STATISTICS

Height: 3'1" - 50th percentile

Weight: 33.2 lbs - 75th-90th percentile

ONE!

 HAPPY BIRTHDAY, BROGAN!

 

 

 

ONE-YEAR-OLD BROGAN 

Weight: 25 lbs 4 oz - 80th percentile 

Height: 29.5 inches - 50th percentile 

I'm starting to sense a pattern...

Yesterday I made another trip to the pediatrician with Brogan. He was sick again, and again his breathing was sounding pretty bad. He had spent most of the day screaming bloody murder. He got a breathing treatment while we there (with some oxygen mixed in, this time). His oxygen level beforehand was in the high 80s. (That's lower than Ayden!) After the treatment, the level was back to a better place.

We figured all the screaming meant an ear infection. The pediatrician saw a bunch of fluid in there, though no infection (yet). Nevertheless, an antibiotic was prescribed (NOT amoxicillin) to deal with an impending infection. He's also getting a steroid to help deal with the inflammation in his lungs. And I'm giving him breathing treatments as needed, which he continues to do well with. He even fell asleep during one.

The day after, he's doing much better. He's drinking a lot more, playing a lot more, and screaming a lot less. These are all good things, obviously. However, I had a moment today that was (initially) really bad.

This afternoon, Brogan pooped for the first time in a while. Allison was occupied, so I had diaper changing duty. I soon discovered everything in his diaper was red. Really red. After everything we went through with Ayden, I'm conditioned to not overreact to things like this. Even so, I was thinking, "Well, this can't be good." After finishing the diaper change, I went off to inform Allison. That's when she told me the pharmacist had mentioned that one of Brogan's medicines might turn his poop red. I kind of felt like this.

At any rate, crisis averted. And all out war averted: Brogan pooped again later (again all red) while Allison was at church with Ayden, where we have no cell phone coverage; I'd have been at Vandy by the time she could call to inform me of the pharmacist's warning.

So, clearly Brogan's body doesn't respond all that well to getting a cold. We're wondering how many times this has to happen before the pediatrician starts investigating the possibility of him having asthma.  What's interesting, though, is that Ayden has been sick each time Brogan has, presumably with the same thing each time (Ayden's probably brought it home from school each time and given it to Brogan). Yet, Brogan is the one that we keep having to take to the doctor.

We haven't taken Ayden - the one with the single ventricle and lower oxygen level - once. Of course, if Ayden's body reacted the way Brogan's has, we wouldn't be counting trips to the doctor. We'd be counting days spent in the hospital. In some really weird way, then, the way it has been is the way it's needed to be.