#7 Complete

Surgery seven is now behind us and we forge on with our brave hero, Tristan.  The surgery was successful and had no hiccups.  The surgeon was able to get quite a stretch on Tristan this time…in fact he is about 3/4 of an inch taller.  He definitely felt this surgery more, as he has been a little more prone to rest on the couch than normal for him.

 

Our trip home was smooth, well except for that six hour delay at the airport with three kids.  We now have to stay “high and dry” for the next few weeks as Tristan can’t go in the shower for a week, can’t go in the tub for two weeks, can’t go in the pool for three weeks and can’t go in a lake/river/pond for six weeks! 

 

We are ever grateful for all the thoughts and prayers that you all give, and forever thankful to Our Lord and Savior for walking with us every step of the way.  We have so much to be thankful for and hope that Tristan’s journey is a faith boost for all you.  Join us in December for surgery #8.

 

God Bless,

The West Family

7th Surgery Trip - Day 1

I’ve been married for 8 ½ years now…and I love her, I really do. However, it is her goal to push me to insanity. For those of you who have been following the blog for some time, you know that Becky insists on making us walk from the train station to the hotel on our Philly trips. Well, except for last time…December 2012 (mark your calendars, folks) she let us rent a car and avoid walking all together. So I thought I had finally broken her…NOPE! Apparently, the reason we rented a car last time was because it was winter and too cold out for the baby. Now, it is June and “a little humidity and rain”…that’s right RAIN “is NOT a reason to use the services of a taxi.”


Let me tell you how it went…we left for the airport and due to my very astute planning we arrived at the airport within the required “two hour before your flight” timeframe of the TSA. Hooray…one point, Adam. We make it to the gate, board, and arrive in Philly right on time. Hooray…three more points, Adam. We pick up the one checked suitcase (that’s right let’s cram as much as we can in one bag…so my clothes can be wrinkled all week, but save $$$) and we get on the train in record time. Hooray…two more points, Adam! We get to our stop on the line and begin walking to the hotel with three kids, a suitcase, a carry-on roller bag, a diaper bag, three backpacks and the “retro metro” (for all you Thirty-One fans) bag. We brought the double stroller so Emerson and Tristan are riding along and Addison who is a real trooper on these trips is walking merrily with us. Then….drip….drip….and then downpour! Ugh.

So then the question is to hail a taxi or not…insert witty comment from Becky, “It’s a warm rain.” We walk….or trudge…I think it was trudging on my part. Now, Becky did have me pack one umbrella…so Addison is covered and Emerson has the little stroller cover…so at least the girls are dry. Tristan is holding a bag on his lap, so he only gets his head and shoulders wet. However, Becky and I are soaked to the skin. One nice man (who didn’t realize I was with Becky) offered to walk her to the hotel with an umbrella over her head….incredible, but she sweetly declines.

We drip into the hotel lobby and the hotel tells us that our room isn’t ready yet…(did I mention Ronald McDonald House couldn’t squeeze us in?)…so we hang in the lobby (soaking wet) for forty minutes until we can go up to our room.

In our room, we change into dry clothes and decide to walk to the bookstore and grab some dinner from the “Wawa.” We get caught in another downpour this one with winds strong enough to invert our umbrella. However, some nice man (a different one) offered an umbrella to Becky, so now we are all soaked this time…but own two umbrellas. So I guess Becky gets a point for that.

After the second drenching, we enter the hotel lobby and find a superfluous amount of people in said lobby. An alarm is sounding and emergency strobes are flashing. We are wet and in the lobby again while a “false alarm” gets cleared by authorities. (Apparently, it was the second false alarm of the day.) We settle in for the night and then at 2:49am the alarm and emergency strobes are flashing again. A computerized voice is telling us to make our way to the nearest emergency exit. We throw on flip flops and grab our wallets and the kids - out the door in less than 20 seconds. Poor Addison is dazed and confused but walking down the twelve flights of stairs, while Tristan is attached to Becky in a monkey grip, and I am holding sweet smiling Emerson.

We wait outside with strangers (also in their pajamas and one person oddly, wearing only a robe) until the alarms stop. I realize that I forgot the room key in the room (I think I lose a point for that) so we wait in the lobby again for the crowds to clear and for the front desk to get back to their normal activities.

We are back in our room by 3:30 and the big kids go to bed pretty quick. Emerson settles back down by about 5am…and the alarm goes off at 7am to get ready for the pre-op day at the hospital. Whew…day one is done…day two will clearly pale in comparison (I hope).

Superhero "Tristan"

An Update on Our Superhero, Tristan!


For those of you who have been following us closely with Tristan’s surgeries…his last surgery went very well in December 2012. He took a few weeks away from preschool and went back in full swing by early January 2013 after a great family Christmas holiday. He enjoys school, his teacher and friends. He has been doing so well at school and has really taken an interest in learning more and more. He loves to sing and through little catchy songs he has mastered a lot of material in the last few months. He also just recently graduated from Preschool and will be starting Kindergarten in the Fall.  He is so excited!

Tristan was “adopted” by the Rainbow Connection a year and a half ago. This is a charity for children who have special medical needs in Michigan. They grant a big wish to the “wish child” (Tristan picked Disney World last April) then after the big trip they send out tickets to local venues, as they become available. Tristan enjoyed a day at the International Auto Show in January, and recently a day at the Grand Prix on Belle Isle.

Tristan listening to the driver of car 55, who also is named Tristan, at the Detroit Grand Prix.



The family enjoying the day at the Detroit Grand Prix. Minus Emerson of course.  Those cars are very loud.

Medically, the last six months have been quite relaxed. Tristan’s nephrologist has given another three year clearance, as his solitaire kidney is doing wonderfully. Tristan stopped his weekly physical therapy appointments at the hospital center because he had hit a plateau. In order to keep him limber, we placed him in swim lessons, which he LOVES! He has been working so hard on moving from level three to level four, although arching his back to float is really tough for him. Hopefully, this next surgery doesn’t set him back much…as he has to stay out of class for approximately a month.

Tristan’s next surgery will be on Wednesday, June 12th (Tomorrow). We expect great things on this journey and thank God for his enduring grace and mercy. Your prayers and support are so appreciated and are such a blessing on our family and more importantly Tristan’s life.

Philadelphia Bound

Here we are just a week before Christmas and we are ready for another trip to Philly. The plan this week will be to travel on Monday, pre-op appointments on Tuesday, surgery on Wednesday, recovery on Thursday and return home on Friday.

We are praying for safe travels, and a complication free surgery. It would be nice for Tristan to have just am expansion this time. It was so nice last time to see him bounce back so quickly.

We will keep you updated with T Man's progress.

Gods peace to all of you.

The West Family

Waiting

Wednesday morning went well considering Tristan wasn't allowed to eat for 12 hours.  In fact he only had one fit about not getting any food.  He even did well when Mommy and Addison left the hotel a few minutes early to get some breakfast without him. 

Addison having a muffin and hot chocolate.

Tristan and I checked into the surgery center a few minutes before 11am and Mommy and Addison arrived shortly after.  11:15ish Tristan and Mommy headed back to pre-op for his IV antibiotics and giggle juice.  Mommy kept Addison and I updated with the following pics. 

Warming up Tristan's hands so they can insert the IV.

Little man did not like the IV.  Of course it did not help that they tried one hand and had to change to the other.

Apple juice chaser after taking his giggle juice (to relax him.)

At about 12:35 Addison and I were allowed to go back and see Tristan for a few minutes.  Then at 12:50pm they took him back to the OR.  He was much more alert this time as he left us and he was so brave and stoic.  The rest of us made our way to the surgical waiting room and set up shop with all the tech gadgets.  Becky did some grading, Addison watched a movie, and I checked work email.

At about 3pm, we got an update from the nurse that they were about finished in the OR and they were going to start closing Tristan back up.  It was shortly after when Dr.Flynn came to speak with us about the surgery.  Dr. Flynn stated that he was able to get another two lengths on the first VEPTR that was installed.  Then he confirmed that the lamina was in fact broken where the second VEPTR was attached to the spine.  Since it was still broken, he had to attach the new bottom clip to the lamina above the broken one, which appeared much stronger.  He also told us to expect to be back in late June or early July.  In addition, Dr. Flynn determined that our plan for a Thursday check out was not going to be possible, which means we will need to extend our stay in Philadelphia. It appears that the hotel can accommodate our extra day, now we are crossing our fingers that we can change our return flight without breaking the bank. 

Tristan moved to the recovery room and soon after Mommy was able to go back and join him.  All the while Addison and I got text updates on his status.  Below is a picture of Tristan still sleeping before he woke up for the first time.  He looks much better this time right out of surgery than other times.  The staff used different pain meds then previously and his comfort level was really good considering what the little guy had been through. Within about an hour and a half he moved to the main recovery floor.

Tristan is now doing well.  He has been drinking lots of apple juice, ginger ale and holding down food without any sickness.  The staff seems to be on top of the pain management and Tristan is resting comfortably.  He is even doing well enough to play some Mario on the Nintendo DS.

Tristan has decided that I should stay the night with him, so Becky and Addison will be leaving soon to go back to the hotel for the evening.  Better pray for Becky tomorrow because I'm sure to be grouchy after multiple sleep interruptions.

That's a wrap to day three of this Philly trip!
The West Family

Surprise!

Our family has traveling to Philadelphia down to a science - packing, getting to the airport, going through security, flying, catching the train, and of course walking to the hotel...........WAIT!  Back that up!  Did I say walking?  Surprisingly, not this time.  Yup.  That's right, Becky let us take a taxi from the train station to the hotel.  Which meant that I did not have to carry a backpack, three suitcases and Tristan.  Shewwwwwww.....it was nice.  It was glorious.  It was everything I had hoped it would be and more...right down to the interesting smell in the cab.

Now...I wonder why Becky let us take the taxi?  Was it the colder weather?  An early Valentine's Day gift?  Perhaps it was the plea that I posted on Facebook asking everyone to text Becky that she should take a taxi this time? (Great responses by the way, Becky loved each of them.)  Or maybe the reason Becky let us take a taxi is the fact that she is 13 weeks pregnant?  Ooppsss...I guess that's not a secret anymore.

Anyway back to us in Philadelphia...we found out before we left Detroit that the Ronald McDonald House did not have a room available.  So the taxi took us straight to the hotel...hello 17th floor!  After we checked in, we went to the local pizza place and got some yummy slices.

After dinner and a quick stop at the local market for some snacks we settled into the hotel room for the night.  Becky tortured the rest of us by insisting on watching the Westminster Dog Show...you've never seen someone get so excited for some small bearded dog to win a category...lucky us, it's a two day show...so I can tell you what we'll be doing Tuesday night, as well. 

Let's move on...to day two of our trip.  Tuesday morning (Valentine's Day) we got up and headed over to CHOP for the usual x-ray, visit with surgeon, visit with anesthesia and blood work.  If you remember our prior post titled, "Always Travel With a Nanny", important conversations are very difficult to comprehend with two fighting children in the room.  This trip we would like to thank the late Steve Jobs and everyone from Apple.  Their great ingenuity has made it possible to comprehend what the surgeon needed to tell us because there was glorious silence from our enraptured children.

The surgeon gave us some very surprising news.  Apparently sometime since Tristan's last surgery his second VEPTR device broke off from his vertebrae, breaking off a piece of Lamia (not sure if that is how that is spelled or not.)  So poor little guy had a broken bone at some point and we didn't know it.  This of course will mean that Tristan can not just have a normal expansion on the two devices.  Instead, he will have a third incision where Dr. Flynn will attempt to either reconnect at the same place (if it has healed) or he will go above or below creating a new place to secure the VEPTR.  This means a slightly more lengthy procedure and perhaps an extra day at the hospital.  (Hopefully, we will still catch our flight back...I won't think about that right now.)

Obviously, we'll know more after surgery and I promise this time we'll update sooner than later...so you aren't all worried.  What I do know is that we check in for surgery at 11am (yes, I know this is MUCH later than we have ever checked in before.)  Poor Tristan can't eat after 11pm at night...so I don't even want to think about the amount of tears and "I'm hungry!" responses we will hear tomorrow.  Once he checks in at 11am, he'll have his IV placed and then he has to have IV antibiotics for an hour before he can go back to the OR.  I hope that we'll be in a recovery room by 4pm...it is no doubt going to be a long day for everyone. 

We'll ask again that you please say prayers that Dr. Flynn and his team will be guided by the Great Physician, that the fixing of this broken bone will be smooth and that the expansion will give better alignment to the spine.  Wait...I've got to say something else here or Becky will remind me that one sentence does NOT make a paragraph.  Um, I guess that rant officially makes this a paragraph.

Thanks for traveling with us on this journey,
The West Family 

Sorry! I'm a slacker.

Can’t believe that it was four and half months ago that Tristan had his last surgery. Guess we slacked off with posting on the blog…forgive us. As an update, Tristan’s last surgery went great. He did have the 2nd VEPTR placed and with two rods instead of one, he has stayed much straighter. (See picture below with two devices.)



Tristan's X-ray with both Rib to Spine VEPTR's.  Taken 9/28/2011


It took less time for Tristan to heal than with the first VEPTR placement. The doctor had said that would happen, but we were skeptical. It seemed like no time before we were back in Michigan and getting on with life.

Tristan has been enjoying his last few surgery-free months and he was “adopted” by the Rainbow Connection (a wish granting organization here in Michigan.) He was given four tickets to see the Red Wings a few months ago (he kindly took his sister, Mom and Dad with him to the game.) He also was given four tickets to the International Auto Show and this time he took his Mom, Grandpa “The Edward” and Uncle Tim. Here are a few of the pictures of the fun he’s been having around town.

Next week we will be back in Philadelphia for Tristan’s fourth surgery. The actual surgery date will be Wednesday, February 15th. We appreciate your prayers for safety as we travel and most certainly for the surgery and recovery. We’ll post more next week.

We'll leave you with a song and dance from the next Donny and Marie....

God Bless,

Adam, Rebecca, Addison (5 ¼), and Tristan (3 ¼)