Alexis Surgery Updates

Tuesday morning, Alexis embarked on her 7th surgery of her life. This surgery was scheduled to fix her heart defects.

The plan was to arrive at 7:30am and go to CT at 8:30am. That plan was derailed for no known cause. Alexis entertained herself during the delay with some toys. See exhibits A and B.

There was a lot of time in the morning to watch “hospital time”. (this is the time where the clocks move forward but nothing happens in reality – maybe I should call it Time Warp).  
After Alexis exhausted her selection of toys, she upgraded to Steve’s iPad. She loved it. She was coloring and drawing and putting on stickers that made sounds and having an awesome time. She even wrote her name! (Just kidding, she had some assistance!)

Then at 11am, they gave her some Versed and took her to be intubated. She then went to CT scan to confirm a question that her orthopedic doctor had (a small concern – ha ha! He was hoping to confirm that Alexis’ skull was safely adhered to her spine). Alexis has fusions between C2 and C4 of her cervical spine (neck) and they were concerned that the neck to the head wasn’t securely attached. We’ll tease her later about not having her head screwed on.


And then at probably 12:30pm, they were ready to start the 2-3 hour heart defect repair procedure. About 1 hour into the procedure, Alexis’ catheterization surgeon came out to talk to us. The doctor explained that her ASD (whole in the heart) isn’t as easy to close as he hoped it would be. He found that her HOLE is like swiss cheese – with many holes instead of 1 big hole. He wasn’t sure at that time if he would be able to close it with a device inserted through a catheter or whether he would need to do open heart surgery to repair it. We told him we’d like for him to try to close it with the device since that was the least invasive and impactful for Alexis. In the end, he was successful in closing most of the hole, but there is a 3mm defect still remaining. Hopefully that will get smaller as she gets bigger. 

Alexis stayed overnight in the ICU.  We get our own private room and lots of equipment to make sure she has a restful night (and safe!).


We were reminded again today, Alexis does not pick the “easy/straightforward” route, she likes the routes that cause doctors to think and work hard!

Why My Dad is the Best Dad! (from Alexis)

Because I giggle non-stop around Daddy!


http://www.youtube.com/watch?v=mVIQ6m4k2KA

(Please note this video is from middle-of-May, but I haven't uploaded videos in a while and this seemed PERFECT for Father's Day!)
Happy Father's Day MATTHEW!  (and Happy Father's Day to Grandpa Bill and Grandpa John!)
Love,
Catherine

Pre-Op Scheduled tomorrow - 7:30am!

Hi All,
We haven't posted much in a while, but you are probably aware that we are a busy family -- going non-stop most days.  And if we slow down enough, I like to "steal" the extra time and take a nap.  My parents were right to call me CATherine.

So, Alexis and I are going to be on our hospital field trip tomorrow. 
6:20am Departure
7:30am Pre-Op appointment (including chest x-ray, blood draw, cardiac clearance and anesthesia approvals)
They suggest that we plan for 5-6 hours at the hospital to complete everything, but they also say that some kids will be staying overnight in advance of the surgery.

So, by the time we return home tomorrow, Alexis and I will be beaten into a pulp.  Only to turn around and go back to the hospital for Tuesday's surgery.

Maybe I haven't reminded my online friends which surgery this is -- but it's the cardiac catheterization to repair her heart defects (ASD and PPS murmur).  In the whole scheme of things, Alexis does very well for having heart defects.  Sadly, we know many of Alexis' peers who aren't able to get 'repaired hearts' and their parents are always in our prayers.
But for us, we have been able to put off this heart surgery until Alexis was much stronger and robust - which should improve the success probabilities.

We will let you know how we are doing as we can. 

(For those interested, here is a link to a description of the type of surgery Alexis will be having - I thought it was really amazing and educational - http://www.youtube.com/watch?v=kPfH-D2O9mA) 

Will post more later,
Catherine

First Trip to Storyland (Glen, NH)

This weekend we went to Storyland in Glen, NH (~5 miles from our condo).  It was great fun!  We went on Saturday afternoon and then on Sunday morning.  Definitely the kids and parents were exhausted after 3 hours at the park!! 

Some major perks about Storyland:--

a)   If you buy your ticket 3 hours before closing, it is good for the next day.  (yipee!)

b)   If you take your 2 year old, she's FREE.

c)  If you take your hearing impaired child, she's FREE.  (super lucky there).

d)  If you take your hearing impaired / physically impaired child on the rides, she is treated like a VIP (she even gets a VIP pass).

(VIP means that she can go in the EXIT and skip all of the queues!!)  We had a fantastic time on our first trip to Storyland.

Dad helping Alexis enjoy her horse ride! 

Jessica enjoying her horse ride! 

Alexis and Dad on the Flying Shoes!!  Alexis loved the shoes!!!

Jessica making a raspberry when Mommy gave her a hug. 

Jessica driving us around the farm!  Alexis was the copilot and Mom and Dad rode in the back.

Alexis enjoying the Ball Pit!  She loved it!!!!

Matt and Jessica - both being very cute!!! 

Radiology Tour -- Alexis Style

Alexis toured the Radiology Department today.
1. Ultrasound to review her abdomen
2. X-ray to review her abdomen
3. X-ray fluoroscopy to review her stomach, small and large intestines
These appointments were scheduled as 9:50, the 10:15 -- but you can imagine that Alexis style means that we were there from 9:45am until 2pm. 
The ultrasound went fine, the x-ray went fine.... but then started the fun.  Looking at live pictures of her stomach emptying and  then the flow of barium into her small intestines.  Alexis' intestines are really in the right order, or at least not as far as the doctors could see.  So we took a break (I got lunch), Alexis got to hang out with me.  They were hoping that the barium would move further through her system.  It did!  And I think that made them even more confused.  We went back for a simple x-ray and then we took more fluoroscopy studies.  And we left without knowing anything more than we did before we went -- they would need to review the video over the weekend, compare it to the studies that were done in 2007 and then try to compare it to the studies that were done in 2006 when she was in the NICU. 
Some commentary on the video -
a)  Alexis seems relatively pleasant during the first two video clips.  She wasn't allowed to have food after 4am, so she was starting to get rather grumpy with no food.... that is the growling, it means "I'm hungry!"
b)  I sound like a dork.  That is my mom-talking-to-Alexis voice.  I hate it, but Alexis thinks it's cute.
c)  Alexis is not wearing her glasses because she chewed on them and they were dropped off earlier today to get the lenses replaced.  Alexis is not wearing her hearing aids because they were moving her around a lot and it wasn't worth putting them in and then having them whistle / or having them interfere with any x-ray images.

Hope you enjoy!
Catherine


http://www.youtube.com/watch?v=T9PpLKe4pIs

Slow Radiology Day

Alexis and I are at the hospital... for routine tests ordered by her GI doctor.  Well, routine tests = very slow in Alexis protocol.
We did an abdominal ultrasound, then abdominal x-ray, then they did fluoroscopy study with barium inserted in her tube....  Amazingly, all of the tests were carried out on Philips equipment (yipee!)  I took some video of Alexis (our super-model) showing of how the equipment works. 
Naturally during the last test, they decided that her anatomy is so weird that we have to wait until all of the barium is through her system.  So, we had lunch at the hospital and are now waiting for Alexis' bowels...  And of course, they think we'll be done at 1pm but I know Alexis better, she has her own protocol.
So, I will post more later when I get home (which is after picking up her shoes from school, picking up her glasses from glasses place - getting new lenses and then going home).
Catherine & Super-model Alexis

Alexis Unplugged (All Acoustic Alexis)

http://www.youtube.com/watch?v=-KMbEEXOsB0

Alexis playing Dad's guitar, please note that while she is leaning on Dad she is using both hands and very intent on playing the guitar herself.