Mom Hijack: Thoughts Outside the OR

It doesn't matter how stoic, resilient or strong you are when your child goes into the operating room. I would describe myself with those qualities periodically, but when I'm holding my son's hand as the anesthesia puts him to sleep, there is no ability to hold back tears. He even laughs a little as the strawberry-flavored medicine relaxes him. His breathing becomes a bit labored and then he's asleep. The surgical team assures me they will take good care of him, and I trust them because I have no choice. The thought of not trusting them would put me over the edge.

Pre-surgery

I walk out of the OR and compose myself- for a while. I gather our things- suitcase, bag of "stuff to do", and an empty wheelchair. It's not long after I settle into the waiting room that I start talking with another mom with a 2.5 year old daughter who is going in to have her bone marrow donated to her 5 year old sister. The sister has sickle-cell anemia, and has been in and out of the hospital her whole life. We both can't help but cry. She has two kids in the hospital now. I try to distract her daughter, by asking her questions through weepy eyes- but she's not fooled. I'm thankful when they get called in because I don't know what to say any more. 

I move to another waiting area to access the wifi. I need some distraction from my own thoughts. Put a message on FB to get the positive energy going, have a granola bar, start writing. I get a few text messages wishing Kai well. Rob is stuck in traffic on his way here. 

Kai is having four procedures with a huge team of people taking care of him. That means you sign multiple consent forms that all list the possible risks of each procedure: bleeding, infection, perforation, organ blah blah blah... I stop reading them completely after the third. 

First doctor report: 8:42am

 Dr. McGill, ENT

He drained lots of fluid from Kai's left ear in preparation for the ABR hearing test, which will be the third procedure. 

I guess it's time to go get some tea. The next surgeon will take awhile to finish. On the elevator ride down, the song Blackbird, by the Beatles is playing in my head. Probably because I watched a youtube video of a father singing it to his dying baby (named Lennon) in the NICU, just after his wife died. More tears. Thank you Au Bon Pain for saving me from myself. Bacon and egg croissant please. 

Now, back to FB. I have my issues with FB, but I must admit, people's comments and "likes" can lift my spirit. So thanks to all who sent their positive vibes. :)

Rob arrived around 9:30 and the nurse liaisons told us that Ryan Seacrest and Usher were downstairs dedicating the new patient entertainment center and Seacrest Studios. What a nice distraction. Children's Hospital Boston is apparently the 8th hospital studio that the Seacrest Foundation has donated. Usher, the Swon Brothers (The Voice), and Shawn Mendes (new teen pop star) were there to dedicate the studio and be part of the first broadcast. Some very lucky hospital kids got to take part as well, including one boy who has spent a good part of his life at Children's Hospital Boston having open heart surgeries, and is waiting a heart transplant. Big lump. It just doesn't stop around here. 

Ryan Seacrest

Usher

We watched the broadcast on a permanent large screen that is in the lobby of the hospital. Kids staying at the hospital will get a chance to take part in broadcasts, watch from their room, and request music from their rooms. 

Second Doctor Report: 10:45am

Dr. Jaksic, general surgery

He said everything went very well. The hernia repair was easy and they could see the healed stitch from the other hernia that Kai had repaired as an infant. The g-tube is now placed. This is the most difficult part for me. A button now sticks out of Kai's stomach so we can attach a tube and give him nutrition, since we are unable to provide enough by mouth for him to gain adequate weight. So starts a new chapter...

Facebook is a really nice distraction. And so is Ryan Seacrest- especially when he's not being cheesy. He was actually quite impressive. Seemed down to earth. Does he do drugs? Something I always wonder about when I am star struck. It's disappointing.

 Third Doctor Report: 11:30am

Audiologist

She said the test went well. Kai has normal hearing in both ears and the sound is reaching his brain. No way to know how he processes language from this test- would give a lot to have that one answered.

Spending too much time reading about little Lennon and his Dad. Tears and more tears. Why do I do this to myself?

Last Doctor Report: 11:59am

Dr. Rufo, GI

Everything looks good. He took some biopsies for routine procedures- not because there is a concern. He is in recovery. They should come and get us in 10 minutes or so.

The anesthesiologist equated his part like a plane flight, take-off and landing is when there are most likely to be issues. Hopefully landing will go as smoothly as take off.

12:06 ho hum
12:08 i hope they really meant 10 minutes
12:09 wow, they are good! Kai is awake! Time to start breathing again.

Post- op- not a happy boy

 

24 hours later- a much happier boy!

9th Birthday Bash!

It was a perfect day for my 9th birthday party! Mom was worried the weather was going to be too cold, but with the help of a little campfire and a lot of running around, we all stayed warm. 

Perfect for marshmallow roasting!

Party food!

I had lots of friends and family come to my party. My Aunt Krissy came to help organize and make my delicious fire truck cake!

Yum Yum Auntie!

Auntie Kris and Me

I had to stay bundled up because it was chilly. I had a marshmallow and went zip-lining with my friends.

Thanks Taylor for helping me with the marshmallow- I know it gets messy!

Ready to rock the zip-line!

My brother and friends helping to pull me back up on the zip-line.

This is not very clear, but still a cool pic of me and friends.

My friend Andrew and Me hanging on the swings

Marshmallow cookers

Uncle Andy and Cousin Elsie (thanks for helping with the fire pit!)

Mema

Maeve, Me and our Dads

Everyone was having a great time until... the FIRETRUCK showed up....

...then it was an AWESOME time!!

Everyone got a fire hat

We all took turns getting on the truck...

...sitting in the driver's seat...

...trying on gear...

...and meeting the fire fighters!

Shotgun!

They also gave us a tour of the truck and all of the cool tools!

Thank you so much to the Chatham Fire Department for making my birthday extra special!!!

After the fire truck extravaganza we ate cake. Can you tell that I LOVE the birthday song (especially when it's about me;-)?

And my day ended with a snuggle by the campfire with Mom and Dad. It doesn't get much better then that!

The next day, mom and I flew to Texas...but that's another story...

Busy times...

It's going to be a busy few weeks for me. Luckily, my secretary is really good at logistics! Between October 31 and November 14th, a lot is happening. Of course October 31st was an exciting day for me because of Halloween! For the past three years Mom and Dad have designed my costumes. This year Dad took the lead and made me a...

COAST GUARD BOAT!!!

There were lights and a siren too!

It was probably my coolest costume yet! I had a real USCG uniform too! My buddy Maeve was a cowgirl riding a horse- she's so cute!

Here I am in my parade at school. People even clapped!

 We went trick or treating with our friends too! Liam and Addy were community helpers too- a police officer and a fire fighter!

Two days later it was my birthday! On November 2nd I turned 9 years old! There was a Noreaster that day so we didn't get to do much. We stayed home in the morning and played games. Mom put a candle in my breakfast. We went out to see Alexander and the Terrible, Horrible, No Good, Very Bad Day. It was pretty funny! We had cheesecake after dinner.

The week after my birthday I spent a lot of time going to clinics at Children's Hospital Boston. I saw seven doctors or therapists (OT, adaptive communication, pediatrician, neurologist, orthopedic surgeon, physiatrist, anesthesiologist) in two days! Mom and I were really tired!

This weekend I am having my birthday party! There is a firetruck coming! I'm so excited to hang out with the firefighters! There will be lots of friends from school, the Coast Guard, and my family. It's going to be  a great time.

The day after my party Mom and I head to Texas for a revisit with the clinical trial team at University of Texas. It will be a quick trip, just over one night.

Then, on November 14th I will have my quadruple procedure surgery that was postponed from last month due to a cough. Hopefully my stuffy nose won't get worse, so we can get this surgery behind me.

I'm going to need a lot of rest to get through to next week!

Quadruple Procedure Surgery Coming Right Up!

Hello family, friends and fans. In a week from tomorrow (October 13th), I am going to have surgery. It's going to be a quadruple procedure surgery! I will go into Children's Hospital Boston on Monday morning (hopefully I'm first so I don't have to wait around too long without eating) for the procedures:

1. Hernia repair- this is my second hernia. The first was when I was not even a year old. I've had it for awhile, but the doctors have not been able to find it- only mom and dad have seen it. Even so, the doctors know they have to go in to fix it. Luckily, it hasn't seemed to cause me any pain.

2. Endoscopy- for this procedure they will put a scope down into my stomach and look around to make sure my insides are working  properly. They will look for signs of reflux and/or scarring.

3. ABR test- This is the auditory brainstem response test. It gives information about the inner ear and brain pathways for hearing. Even though it is obvious that I can hear, this study will show more how my brain is processing sound. They do this by putting electrodes on my head and measuring my brain waves in response to sound. I have to be asleep when they do the test.

4. G-tube placement- For those of you who knew me as a baby, you know that I used to have a g-tube. Mom and Dad had it taken out once I was able to start eating. I've had it out since I was about 6 months old. As I've gotten older, it is hard for me to gain weight. I spend lots of time eating and trying to get in enough liquids. I weigh just under 40 lbs and will be nine years old next month. With the g-tube, I will be able to get nutrition in more quickly and easily. I will have a little "button" coming out of my stomach that a tube can attach to. I can even be fed overnight!

So on October 13th send some positive thoughts and energy my way!

Kai's Tri!

Well, we did it again! Mom and I competed in our second triathlon on September 6th at Craigville beach in Hyannis. It was an overcast and misty day, with really BIG waves! Mom was a little worried about the waves at the start, but we pulled through. Here's how it all went down...
(Click here to see the video)

These are our friends Sean and Julia. They did the race with us last year too. 

Another team started with us also, Alex and Kyle!

Al and Addy watching us take off!

 Here we are getting into the water after the whistle blew! It was super wavy! Mom was worried the boat would get blown over and I would fall out! Dad paddled along side us in the kayak to make sure I was safe. After about 50 yards into the swim, I came detached from Mom! She had to swim back to get me and reattach the rope to her belt. It was a little scary, but we kept going. We started at the back of our wave, but mom managed to pass (and run over) a couple of people with the boat!

 

 Here we are coming out of the water after a quarter mile swim. Dad didn't bring a change of clothes and he got a little wet carrying me out! Then it was time to transition to the bike!

Dad was our pit crew, making sure we were hooked up safely. Al (Mema's fiance) rode along with us to keep other riders from getting too close on our 10 mile bike.

 Coming into the finish on the bike. Luckily, Al was with us on the ride. He took one for the team when a rider got too close and he had a fall. Fortunately, he only had a few scrapes and was able to finish the ride.

Next we transitioned to the run. Mom and I did this part on our own. Only 3.6 miles to go!

 Our friend Karen surprised us on the run and took some pics!

 Almost to the end! This is where we caught up to Sean and Julia!

We got to cross the finish line together!

 Mom helped me walk across myself.

Our final time was 1:36:31. Four minutes faster then last year!

Our supporters! Dad, Liam, Addy and Al. Mema was taking the picture. Our friends Cindy, Krystyna and Skyler were there to watch and cheer also! It was a great day!

All of the Chatham Mom's and Me (well, and Liam too).

Chilling out after the race! I am a warrior!

We even had an article in the newspaper about Mom and I!