Tristan James West

12 Down, 12 To Go!

2016-05-14T14:52:00.000-04:00

It’s been a while since we updated the blog, so for that I apologize. We find ourselves updating Facebook so frequently these days, but know that many of you follow Tristan’s story here…so without further ado let me update you on our brave little man.

Tristan is now 7 1/2 and in 2nd grade and he is now approximately at the 1/2 way mark of his journey. We switched last April from VEPTRs to growing rods.

This was a difficult transition, as the removal of the old and placement of the new were done in the same day and included a cadaver bone fusion. The recovery took quite a bit more time, but our champ once again pulled through. However, again Tristan had some superficial infections (what seemed to be our new normal) that then required a clean-out surgery at our local hospital here in Michigan a few weeks later.

Due to the bone fusion Tristan was restricted on activities from April - November. It was difficult asking him not to ride his bike for several months and to restrict him from running and wrestling. To say that Tristan was elated when the restrictions were finally gone would be a great understatement.

As of December, Tristan had his 12th spinal hardware surgery and the 1st of the growing rod expansions. Becky requested that the doctor try a different stitch-up procedure this time. Previously the stitches were dissolvable and were causing irritation post-op in an area with tremendous scar tissue. Becky asked if external stitches were feasible and the doctor agreed to try it. Tristan had ZERO redness, irritation or infection and all I had to do was snip the stitches a few weeks later. (Don’t worry a family friend who is a medical doctor also came by and looked at the site.) It was a wonderful thing to have a surgery go so smoothly and see Tristan bounce back so quickly. We know this is all due to the vast amounts of prayers that accompany Tristan on this journey and a God who graciously hears our call.

Next surgery is scheduled for August 3rd in Philadelphia. The doctor is trying to push Tristan an extra two months this time (normally we go every six months.) We are slightly nervous as to how uncomfortable this will be for Tristan, but trust for another uneventful procedure. We will again post on Facebook and here to let everyone know his situation.

We also wanted to let you know about an amazing fundraiser event that some friends have put together for Tristan. As you can imagine, Tristan’s surgeries are expensive. Fortunately, the insurance does pick up quite a bit, but with the surgeries out-of-state we don’t qualify for Michigan’s medical insurance for children with special needs. This means quite a bit comes out of pocket, in addition the travel expenses (airfare, hotel, and food) adds up quickly in a major metro-city that is why this event is so helpful. Click on the link below if you are interested in getting involved in this great day to celebrate our brave boy.

Family Fun-Raising Night with Tristan West

We know so many of you pray for Tristan on a regular basis and ask that you please continue these prayers and also encourage you to share Tristan’s story with those who need a faith boost. We know without a doubt that our Lord has guided each step on this journey.

God Bless You All,

Adam West (Becky, Addison, Tristan, and Emerson)

Our Four Days Before the Surgery

2014-06-06T15:37:00.001-04:00

Well, it can’t ever be uneventful apparently. We got to the airport over two hours ahead of our flight, which I checked multiple times on our itinerary. We checked our baggage and then the airline representative said, “Your flight leaves at 7:44 tonight. You’re all set out of gate A27.” The wife and I looked at each other then back at the airline representative. “What time?”, I asked. “7:44pm, sir - five hours.” So….I show her our itinerary showing we leave in two hours. Apparently, the airline cancelled that flight about three months ago, and bumped us to the next flight. That would have been nice to know earlier in the day. So after killing five hours at the airport we left “right on time” for Philadelphia, PA.

We arrived late, but this time we had a rental car so we were able to get into the city easily with no issue. We woke early on Friday morning for the typical x-ray, doctor consult, bloodwork, anesthesia appointments that are part of our pre-op half day. All went well and we were walking out in record time. We were able to check-in on Friday at the Ronald McDonald House, which had the kids beyond excited. In addition, the Gregory family (five and one on the way) from Charleston, SC was coming up for the weekend to do a little sight-seeing and give Tristan some pre-surgery support.

Saturday morning our family along with our friends took a drive out to Valley Forge (only about 20 minutes from the city.) We walked the sacred ground and endured the Wife’s history fascination for a good two hours out in the hot sun. I now know more than I ever cared to know about the encampment of 1777-78, please feel free to test me. After a few shots (that’s a revolutionary war play on words for you) of the families with canons and replicated cabins we were off to lunch. Becky wanted to go into Amish country for an “authentic family style meal.” That didn’t work out….so we went to the King of Prussia Mall and ate at CPK (California Pizza Kitchen.)

The Wife (if you know her, you are aware of this) likes to “woo” people. (This means she talks to everyone.) You can tell when she is “wooing” because the pitch of her voice goes up and she pretends she is southern. I think it’s endearing and apparently so did the regional manager at the CPK who after hearing that we were in town for Tristan’s 9th spinal surgery took care of the check for our party of 11! So here is my plug for CPK….go there….they do really nice things for people. Seriously though, how amazing and it just shows how at every turn God blesses us on this journey.

Sunday morning we went downtown to attend Christ Church. It is the church that George Washington and a whole lot of other famous people that Becky told me, but I don't remember, went to worship. After service we met the Gregory’s for a little more time together and then said goodbye to them as they headed home. Since we were “already downtown” we (meaning The Wife) thought we should get tickets to see Independence Hall with the kids. These tickets are free so I could come up with no reason why we shouldn't see the “Historic State House of Pennsylvania” (see I listened to the tour guide.) I think Addison and Tristan enjoyed it and it gave Becky a chance to “woo” another Park Ranger with questions. Enjoy a few shots (hilarious…I used it again) of our sight-seeing below and certainly check out the city of Brotherly Love for yourself…as it is pretty cool.

Valley Forge Cabin

The West and Gregory kids at Valley Forge

Valley Forge

Independence Hall

Tristan Rockin' his independence.

Where the Declaration of Independence was signed.

Barry must have been important.

Christ Church (did I really need to type that?)

We Did It Again

2014-05-31T22:34:00.000-04:00

We posted that we were on our way to Philly and then didn’t tell you what happened. Tristan had surgery in December and came through “just beautifully” in the words of the wife. Fast forward to May 2014 where he has now finished up kindergarten and is prepping for the next surgery on June 2nd. It is going to be more invasive than normal as they are replacing the two VePTR rods. We’ll be posting more as we travel there, but we know as always that God goes before us….just as the good shepherd in Psalm 23.

Check out this video of Tristan.

Mishap

2013-12-16T18:35:00.002-05:00

It is that time of year again…time for our brave hero, Tristan to travel over yonder land to the City of Brotherly Love, which is Philadelphia. As always, I am keeping our family of five on track (not an easy to task) so that we can arrive on time to DTW.

As you are all aware, I am very astute in my planning and always ensure that we arrive within the required “two hour before your flight” timeframe of the TSA. Well, until today…. I must admit (and this is hard for me) that I might have read the arrival time in Philly, instead of the departure time in Detroit on our confirmation. Um….yes, you read that correctly, WE MISSED OUR FLIGHT! I did not realize this mistake until I attempted to check my bag at the kiosk and received an error that it was too late to check my bag for the flight. “What?!!!” So, I stomp over to the customer service desk and Bernadette explains that we have indeed missed our flight. (INSERT: blood pressure rise here.)

I look out of the corner of my eye to see Becky’s face go pale. Considering that we were flying on donated sky miles from Children’s Miracle Network, I begin to feel a drip of sweat on my brow. The thought crosses my mind that this Christmas we might be spending $3000 on airfare because of my…well, we’ll call it “mishap.”

Becky attempts to woo Miss Bernadette in desperation as she pleads with her for assistance. “Oh, no! Our son is going for surgery and these were donated miles for our family to get there.” The desperation is clear and it is more than clear to onlookers that “this guy messed up.”

Bernadette begins looking at options only to find that the next flight to Philly is booked solid. (INSERT: blood pressure rising higher here.) Perhaps, Newark is an option? No. Wait. No. Wait, there is a late Philly flight, but Bernadette has to call the “powers that be.” I wait with a strange liquid filling my eyes, clearly brought on by my now sense of panic. My wife (who I do tend to give a hard time in this blog) calmly walks over to me, hugs me and says, “Things happen for a reason.” I look at her, unable to speak, how can she be so calm at a time like this?! She goes back to managing the kids, as Bernadette waits on the powers that be to decide our fate.

After what seems an eternity Bernadette thanks the person on the other line of her phone and hangs up. She consults with the other customer service representative next to her and assures me that she can help get us on the 8:15pm flight…with NO service charge. Praise the Lord and a huge thank-you to Bernadette and Delta Airlines. She begins to work her magic behind the desk. After the final boarding passes are printed and my blood pressure begins to lower slightly, I hear the kids and Becky ushering huge thanks and assuring Bernadette that she has “saved the day.” I have to roll my eyes as Becky asks Bernadette for a quick photo op with her and the kids. (Gotta love that wife of mine!)

Now, we sit at Detroit Metro and await the arrival of our plane. We should arrive in Philly around 10pm, we’ll need to grab the luggage, get on the train and manage the streets of downtown Philly to get to the hotel. However, after the start of this trip, the rest should be a cake walk.

#7 Complete

2013-06-18T20:03:00.000-04:00

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

2013-06-11T22:36:00.001-04:00

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"

2013-06-11T17:39:00.000-04:00

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

2012-12-16T19:24:00.001-05:00

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

2012-02-15T21:38:00.000-05:00

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!

2012-02-14T18:06:00.000-05:00

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.

2012-02-07T15:24:00.000-05:00

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)

Always travel with a nanny.

2011-09-27T20:15:00.001-04:00

It was a glorious trip to Philly on Monday. The ride to the airport with The Edward was great, the kids were awesome on the airplane and the train ride from the Philly airport to University City Centre was astounding. Then we ended our travels with the infamous walk to the hotel. (I thought at one point Becky was going to cave and grab a taxi…but then Addison said, “It’s good to exercise.”) So we walked all loaded with luggage and kids. For a couple of blocks the kids pulled their own bags (they are on wheels); then Tristan wanted to be carried, so I became the “bag boy” so Mommy could carry the little man.

The family walking to the hotel. Who needs a taxi?

We were not able to get into the Ronald McDonald House again, so the back-up plan at the University Sheraton has been enacted. (Thanks again to Deb for hooking us up with a great rate.) We plan to call each day to see if RMH can get us in, but in the meantime we’re enjoying plush towels on the 18^th floor. Oh, and did I mention they have an outdoor pool? Of course people in “D Climate Zones” (always get a geography lesson with Becky) don’t swim in outdoor pools when it is nearly October. Wait! We do! Becky packed the swimsuits, so as soon as we hit the hotel room, everyone changes into suits and we’re off to the pool. Then, Becky puts her toe in the pool, “Oh, that’s freezing. Adam you take the kids in.” Apparently, I have more “insulation” and as the man, “I can handle it.” The kids and I swam for about 10 minutes with Becky sitting on the edge ready to wrap the kids in towels as soon as they emerged into the cool night air.

Tuesday morning was typical with the multiple pre-op appointments. The kids were great during check-in, x-rays and while waiting to see Dr. Flynn. Of course, when Dr. Flynn shows up in the room to discuss the important need to know items about the surgery, you end up with a conversation something like this: “Great to see (I WANT THE IPAD) you guys (NO, I WANT THE IPAD). (GIVE IT TO ME) Tristan will have to have a second rod placed (NO-NO-NO) in his back for more (AHHHHHGGG, MOMMY!) stability. We would have liked (STUPID) to have (MOMMY, TRISTAN SAID STUPID) waited until he was bigger (NO-NO-NO SISSY) but his curvature is even worse than when we first (DADDY, I’M HUNGRY) placed the rod last year.” I think you get the idea. You should always travel with a nanny, to avoid these types of conversations. Anyone want to volunteer for the next trip? (Insert smiley face here.)

If you did not understand the conversation from Dr. Flynn, Tristan will have to have a second VEPTR installed. Due to the severity of his curvature and where it is, he will have to have another VEPTR that spans from rib to spine. This is not as common, but the only option for a more stable spine. The worry is not only the curvature of the spine, but that it is now starting to twist as well, and in areas that were problem-free last year. Not the news we wanted to hear, but it is something that we will take to our Heavenly Father in prayer.

Tristan's spine directly after the first VEPTR was installed in October of 2010.

Tristan's spine on Tuesday, September 27th, 2011. Notice the degree of curvature again. Dr. Flynn also drew where the second VEPTR will go.

We will report to the surgical floor tomorrow (Wednesday) morning at 8am. We ask that you keep Tristan and Dr. Flynn in your prayers. We are again concerned that there may not be enough extra skin to cover his back and that is a huge risk for infection. We serve a great God who has blessed us in so many ways and know that He is hearing not only our requests, but those of you joining us in prayer as well.

God Bless You All.

The West Family

Time for Another Philly Cheesesteak

2011-09-26T11:02:00.000-04:00

So, it’s time for another Philly cheesesteak, and more importantly another surgery for Tristan. We leave today for Philly, please pray for us as we travel and ask God to guide our footsteps along His path. We know that all things work together for the good of those who serve Him and we are expecting good things during this third surgery for Tristan.

Tomorrow (Tuesday) we will have the pre-op check-ins at the hospital. Tristan will have another x-ray, some routine blood work, a quick conference with Anesthesia and then a meeting with Dr. Flynn. We hope that it is all timely and allows for us to have some downtime on Tuesday. We want the kids to be able to take some time out for fun before the surgery on Wednesday morning.

We’ll post more, as we know more. God bless each of you for your faithfulness to Tristan and our whole family!

The West Family

To Make a Short Story - Long…..

2011-04-14T18:18:00.000-04:00

Tuesday morning we had a quick bite to eat and headed down to CHOP for pre-surgery appointments. We checked in at Ortho and then headed for x-ray. There were some problems going on at x-ray and it took nearly an hour before Tristan was called back. Once back there the problems continued, the orders were wrong…finally it got worked out. So we headed over to Dr. Flynn’s office, where we saw his “right-hand woman” Sharon. She gave us the low-down on the VEPTR expansion, explaining it would take about 30 minutes for the actual surgery and should be issue free. The x-rays hadn’t come over, and instead of making us wait she sent us to Anesthesia. In Anesthesia we saw Phyllis and we reviewed the rest of the surgical procedure and were off for blood work. A poke later, we were done for the day. Tristan was given the chance to pick where we would have lunch, and of course he picked the “golden arches.” (No surprise there, all kids seem to love McDonald’s.)

We gave the kids a few choices for the afternoon…go see someone’s house (Betsy Ross), go to a museum, or go see where money is made. They picked money, so we took the subway downtown 30 blocks to the United States Mint. On the way, Tristan fell asleep on the subway, so I (Adam) had to carry him around the city and through the US Mint. He woke up when we got to the gift shop, so at least he got a souvenir.

We went back to the hotel, played for a bit – grabbed some dinner and then decided to call it a night. I know what you’re thinking; those West’s really know how to vacation. However, I wanted to be well rested for the big surgery day. At midnight an alarm went off at the hotel, and then a voice came over the loud speaker. “PECO is reporting an electrical outage. Electricity will be reduced.” So the air in the room went off and after that it was just tough to get back to sleep.

The wake-up call came promptly at 4:45 and it was a rush to get to the hospital by 6:15. However, I am proud to say we walked through the door of the surgical check-in center with four minutes to spare. It was not a long wait before they called Tristan’s name to take him back for pre-op. Becky went back with him and just like last October, the nurse snuck Addison and I back to see him before he got his “giggle juice” and was wheeled off to surgery.

We were then off to the waiting room where we spent the next two and a half hours in wait. That was longer than we had expected. Addison was great considering how long we sat. She put “Tangled” in the computer and watched it from beginning to end. She truly is a trooper and a wonderful, caring, compassionate big sister.

When Dr. Flynn was completed with surgery he wanted to speak with us. This is when we found out that there were two surgical incisions made and this is what took so long. Dr. Flynn started off by telling us that the adjustment went great. They were able to get Tristan through a couple new settings on the VEPTR. Then came the scary part, the ring that holds the rod tight to the vertebrae had loosened, allowing the rod to slide through to the end of the VEPTR. It must have done this sometime between Tristan’s January x-ray, and Tuesday morning’s x-ray. (Had we seen the x-ray before surgery we would have been prepared for this news.) We are not sure how long it had actually been like that, but it must have made it even more uncomfortable for the little man (he really is so brave.) Dr. Flynn explained that he can only hand tighten these rings because of Tristan’s age and bone development. If tightened too much, it would crack the bone. So Dr. Flynn added a secondary point to tighten the rod at this location. He is hoping that this will be a good fix for our very active two-year-old boy. (If this does not hold, a second VEPTR will need to be inserted during his next procedure for stability. We had originally been told to expect a second VEPTR for Tristan around age five, so we hope that he doesn’t have to go through the difficult placement of another VEPTR so soon after the first.)

After our conversation with the doctor, we waited as patiently as we could to see Tristan in recovery. About thirty minutes later Becky went back to him. (This area of the hospital does not allow for siblings, so I waited with Addison.) He was still out when she arrived in the room, but very soon it was clear that he was coming to and was in a considerable amount of pain. The nurse began morphine and he had four rounds of morphine in less than thirty-five minutes. Finally, when Becky climbed onto the bed and he was able to collapse on her, he calmed down. After he remained calm for twenty minutes they wheeled the two of them out into the hall and into an overnight room, where Addison and I joined them immediately.

I was able to get a sense of his pain after this, because he started crying, not a screaming cry, but a low rumble of pain that was obviously very intense for him. The nurses quickly sprang into action with more morphine and he relaxed a bit. I think Becky was about to lose it here, it is so hard to watch your child in pain and not be able to step in and stop it. I know that Becky had posted on Facebook to friends and family about his pain and it seemed like after this he started doing better. I’ll accredit this to the fervent prayers of the faithful to our God who hears our every cry.

The rest of the afternoon involved medicating and nausea. Tristan was asking for something to drink, but all the anesthesia was making him sick and in total he threw up five times, the first time on Becky. Addison asked if she should pray for him and it was so sweet to hear her prayers for him, as she explained to God that “Tristan is in the hospital”.

Finally, the nausea seemed to pass, he asked for food and kept it down and soon after wanted to get up. I carried him down the hall to the playroom, where we did a few puzzles. He tired pretty quickly, so we went back and rested and then after a short rest, we were back to the playroom.

We asked Tristan who he wanted to stay with him at the hospital and as Becky puts it, “He is in his Daddy phase.” So he asked that I stay the night, so about 9pm Becky and Addison went back to the hotel for the evening and it was just me and the little man. (Can I tell you how much this impressed the nurses?)

The night was good. Tristan watched some Thomas the Train, Sponge Bob and Toy Story 3. He has become addicted to the headphones that we bought him for this trip. I guess that is a good thing since I may lose my mind if I hear another Thomas and Friends tune. Ugh….

He slept well through the night with only two interruptions for his vital checks and pain meds, switching from morphine (via IV) to oral pain meds. As morning approached it was clear that we finally had the pain under control and he was getting more comfortable, less than 24 hours after the surgery. After his last dose of antibiotics through IV, we were able to take him off the drip and he was 100% mobile, which meant back to the playroom for Daddy and Tristan. We played for some time, smashing up cars, making Iron man flying noises and coloring. While we were in the playroom, Tristan’s nurse came in to tell us that we had orders to check out and that Dr. Flynn would be in to see us soon. We headed back to the room and soon after Mommy and Addison arrived, Tristan was thrilled to see “his women”.

Dr. Flynn came in to review final orders. Our plan now is to have x-rays in Michigan in July, and then schedule the next expansion for September, which will be five months instead of six. Dr. Flynn thinks that will get us ahead of Tristan’s rapid growth. We pray that it will be only an expansion and not a complete second VEPTR.

We were out of the hospital before noon and back to the hotel to get Tristan out of his pajamas and dressed. We grabbed some lunch and some M&M’s, Tristan’s favorite. The kids are now napping as I write this (and Becky edits it). We are planning on a relaxing night, then off to the airport in the morning for a 12:30pm flight back to Detroit. We look forward to a relaxing weekend of recovery for our brave little man.

We count ourselves so blessed for your prayers and hope to see many of you soon.

God’s blessings - The West Family

P.S. Sorry for the lack of photos. But the blog site is acting funny with my uploads. :-(

God. The Ultimate Travel Agent

2011-04-11T23:36:00.000-04:00

We traveled today for surgery number two in Philadelphia. Our flight out of DTW (courtesy of Children’s Miracle Network for all four of us) was set for early evening. So we both worked a half day, rushed home, threw the bags in the van and were off to the airport.

The trip to the airport was decent, with a minor delay on the Southfield Freeway courtesy of some good old fashioned Michigan road construction. The Edward was kind enough to drive us again, making it an easy drop off. The kids are now pros when it comes to checking in at the airport. They each have their own suitcase that they get to wheel around. The bad part about that is they don’t always want to wheel it. So you can guess who has to wheel it for them…Becky, haha bet you thought I was going to say me.

The flight although a little bumpy was great, Addison enjoyed a movie and Tristan fell asleep. We landed on time, picked up the suitcases and hopped on the SEPTA train into the city. If you have followed our blog you will remember this is the point where I broke down on the last trip. (Recap: Becky had decided that walking from the train station to the Ronald McDonald House (RMH) was the cheaper option. And 11 city blocks later…) Well, I was prepared for it this time and when she said “Let’s just walk it” again, I remained calm – cool - collective. (I am growing.) It was a nice warm night and the walk wasn’t bad. Of course Tristan and his 2 ½ year- old strong personality wanted to pull his own suitcase and walk at a 2 ½ year-old pace, so we journeyed at less than 1mph down the streets of Philadelphia. Did I mention this took a loooonnng time?!

We didn’t have as long as a walk this time though, because as it turns out we are not staying at the Ronald McDonald House. I called this morning to see if RMH would be able to accommodate us (we’ve been on the waiting list since February) and found out they were full. We were prepared for this because they called us earlier in the week telling us to find a back-up plan. Now financially this is not what we were hoping for, but God always has a plan and for Him it’s not a “back-up plan”.

Let’s go back in time a few days…since the call from RMH, I have been earnestly searching for a hotel space under $250/night in downtown Philly. I have explained Tristan’s story to many hotel managers and one graciously brought down the price to $159, which of course Becky was having a “hairy canary” over. We looked at every option imaginable…staying closer to the airport and taking the train in each day, renting a car and staying even further away, but any way we added it up it wasn’t drastically cutting the cost of this trip. We even had a friend at work offer up hotel points, but the hotels available were just too far outside of the city. So we prayed and hoped that RMH would work out again.

Now, here is where the Master Planner (aka God – who acts as a travel agent part-time apparently) enters the scene…Becky went to teach at college for her Saturday morning class on the 9th. Right before class starts one of her students comes up to her and was asking questions about Tristan’s surgery and where we would say. Becky told her about RMH and hoping to get in, and our back-up plan, which was 18 blocks away from the hospital. The student who works full-time in the hospitality industry mentions she is going to check to see if she can book us a lower rate at a different hotel in Philly. She said she would call Becky later in the day…

Saturday evening the phone rings and this individual (sent from God) booked us at the preferred hotel we wanted, but could not afford that is only three blocks from the hospital. She was also able to beat the rate for the hotel that we had as our “back-up plan”. We were thrilled. Wait…it gets better. This morning she texts Becky and says the hotel manager is dropping the cost even more to less than $75 a night – unheard of in the city!!! Plus, we are staying on the top floor with an amazing view, and access to the hotel club lounge which gives us breakfast privileges, select snacks throughout the day, and appetizers in the evening - for no additional costs. (Insert praise to God here.)

So, after a stress-free day of travel, we entered our home away from home for the next few days and thanked God for meeting our every need in His timing and His way. Then we ran out for pizza and now, I am writing this from my king size feather bed...(I won’t elaborate on that further) and know that I will sleep well tonight.

In the morning we are off to pre-surgery appointments at CHOP (Children’s Hospital of Philadelphia) for blood, x-rays, a meeting with Dr. Flynn and we will find out the surgery time for Wednesday. Hopefully, tomorrow will be incident free and if we get out of the hospital early we might be able to catch a little history in the city or maybe Becky can sneak in a “cheese-steak”.

Thanks for your prayers for safety…we are blessed and thank you all for your support in helping us get here. – The West Family

Our Faith is in the Lord

2011-03-20T11:33:00.000-04:00

It was about seven weeks ago when we were approached by a close friend that had an amazing offer for our family. Rosalia Schultz wanted to throw a fundraiser for our son Tristan. The event was to include a concert, pasta dinner, silent auction, raffle and bake sale all with the purpose to help alleviate some of the financial strains encountered with Tristan’s surgical schedule. We had been praying for the Lord to help and to guide us through this journey and his answer was to light a spark in Rosalia. With the help of her husband Greg, and friends Suzanne and Dan Piziali, they were able to create a magnificent event. I should point out that there were countless others who helped in the night’s success including the Berkley United Methodist Church, local businesses, individuals and the Emanuele family who provided the food and labored to make it. The list goes on and on and we are so very humbled and grateful for those who gave of their time, money, and talent.

The event was incredible, starting with a concert that delighted our ears with some familiar and not so familiar music. I have no doubt that everyone left the event a bit more cultured. After the concert we all enjoyed a pasta dinner prepared by a true Sicilian family and the children spent time making some beautiful crafts. There were items for bid in the silent auction, items in a silent raffle and homemade baked goods to purchase. Most importantly there were many friends, family, co-workers and even strangers that blessed our hearts. We were truly touched by the entire evening. Thank you to each of you that contributed in some way to the success of this event for our son. We know that God will bless you for your kindness.

Tristan’s next surgery is scheduled for April 13. Our travels plans are arranged and we are now in the waiting mode. We are hoping once again to be able to stay in the Ronald McDonald House (RMH) should they have availability for us. RMH has a long waiting list, so we won’t know if they can accommodate us until the day of check-in. This surgery will be less invasive, but due to Tristan’s age, (he’s two), he will need to spend the night in the hospital to be monitored. Once we leave for Philadelphia, we will update everyone with Tristan’s progress.

May God Bless You All,

The West Family

The Kid Won’t Stop

2011-01-21T15:08:00.000-05:00

We wanted to give the masses an update on Tristan since it has been awhile since our last post. So I’ll start with Thanksgiving and get to the latter part of January in a few quick paragraphs, I promise. At Thanksgiving Tristan was improving every week and Becky was relieved that he could finally have a submergible bath and I think he was, too. He really loves the water, now I’m sure when he is nine or ten years old, we will have to have arguments just to get him to wash up. So we enjoy the time now where he actually likes it.

Christmas was great this year. Not only did we get to celebrate the birth of our Lord, we also got to have fun watching the kids open up their gifts. It was very magical watching the two of them go at it. Addison was like a hurricane, non-stop paper flying in the air. Tristan was a little more OCD and would immediately put each section of wrapping paper (no matter how small) into the trash bin. Tristan’s process might have taken longer than Addison’s, but they each had genuine fun.

Becky and Tristan having some fun!

We have survived the turn of the New Year and with that brings a sense of “what next?” Tristan had his first appointment locally since November on January 13. He had his typical dose of radiation with several x-rays taken that reveal the VEPTR is doing great. He is tolerating it well, and his growth has not impacted the site and surgery will not have to be earlier than expected. The films were forwarded to Dr. Flynn in Philadelphia and his review was the same as our local doctor (Dr. Zaltz). This means Dr. Flynn will do Tristan’s first adjustment surgery on April 13, keeping in line with the return to CHOP (Children’s Hospital of Philadelphia) every six-months. So now it is time to begin planning our next trip to Philadelphia. (Anyone know of an airline that can fly a four-person family round trip for only $100.00?) :-)

The tricky part of the next flight will be convincing Tristan that flying is fun. The other week we took a trip to the Henry Ford Museum and we went through the airplane exhibit. When we went to go into the “modern style” airplane, Tristan broke down and started crying, saying he did not want to go into the airplane. We believe that he is associating airplanes with Philadelphia and having surgery. Yikes! We may try to fly somewhere before April (Florida sounds good) and have some fun, so we can show him that not all flights lead to surgery. Poor little guy…we knew it would impact him, but we didn’t know just how much.)

Overall, Tristan has been doing great and has been pain free for months. He is in swim class with his “sissy” right now and absolutely loves it! We did have one little scare the other night as Tristan was pointing to his back and crying. He hadn’t shown any signs of pain with his back for over two months, and it really freaked us out…immediately we began to think something was wrong. We took his gel pads off to see if he was bruised and there was nothing. We were hoping that it was not a major internal problem because with the pads off he was even more upset. He finally threw himself back into the cushion on the chair and proceeded to sway side-to-side rapidly, pressing his back into the cushion. This helped us solve the problem quickly, the surgical area was itching and so we taught Tristan to say the word “scratch”. All that fussing turned out to be an “itch”, Becky says he’s just like me, which is a good thing, right?! After lightly scratching for several minutes, the alarm passed and everyone calmed down. Whew!

God Bless you all for your continued support and for checking in on our “little man.” We thank all of you who have shown support for Tristan with prayers and well wishes. The Hand of God is certainly guiding us all through this incredible journey. Please let us know if we can keep you in our prayers for anything and I promise to update the blog once we get closer to Tristan’s surgery date in April.

Until then, God Bless you in this wonderful year to come,

The West Family

Continued Progress

2010-11-10T20:43:00.000-05:00

First, let me apologize for the delay in updating the blog, but recovery has consumed our lives.

A few days before we left Philadelphia, I (Adam) came down with a GI viral flu (that lasted nine days). The night before we left, Addison and Becky came down with the same viral flu (and endured it for the first week home, as well.) We mustered up our strength and were able to fly home on Tuesday, October 26th. (Luckily, due to the illness Becky allowed us to take a taxi to the train station…whew!) The weather was really windy on the day of our return flight, and we were concerned that our flight would be cancelled, but luckily, we made it out of Philly.

Tristan slept the entire flight home, which was a relief. After a little rerouting in air, we landed safe in Detroit. The Edward (Becky’s Dad) was waiting for us and the kids were ecstatic to see him. We loaded the van and headed home to Berkley. The mammals (Riot-dog, Stick-cat and Titan-cat) were happy to see us and Becky and the kids were happy to see them, too. I (Adam) was just happy to be able to sleep in my own bed again.

The next few days were very good for Tristan. Seeing all of his toys at home seemed to energize him and he pushed himself and played hard. He would crash (emotionally and physically) at night and he did require heavy narcotics to sleep (I use this word loosely) at night. Each day he continues to get a little better and requires less medicine. This past Monday we were able to get him back to the in-home daycare he attends, Addison returned to school and Becky and I returned to work. We have been home for two weeks now and Tristan doesn’t act like he had major surgery three weeks ago. He has shown tremendous improvement during his recovery. He is walking, climbing, and quickly regaining his Jr. Dare Devil status.

The post-op appointment with the local orthopedic doctor was Monday of this week. We were able to see his back, finally. (It’s been covered in dressings since the surgery.) The incisions looked perfect and there was no evidence of any infection or skin breakdown. The VEPTR is visible beneath his skin, which upset Becky a bit, but we knew with him being such a skinny kid that we would most likely see it. The local orthopedic doctor said he doesn’t need to see us until January, so we are looking forward to being healthy and well as we enter the holiday season.

We expect to have Tristan back to his old routine by Thanksgiving and Becky is counting the days for him to have an actual bath, again. We thank everyone for the continued prayers for Tristan as he fully recovers. This journey is far from over, as it is expected that Tristan will have 23 more surgeries over the next 12 years, but we know that our Lord is leading us and directing our paths. We felt the Holy Spirit with us at every step, comforting us and giving us a hedge of protection. We are so thankful that we serve a God who hears our every cry. Please let us know if we may be in prayer for you and your family for any need.

Tristan came home tonight to a get well soon cookie basket from his wonderful family at Zion Christian Church. Thanks everyone! As you can see, it made him really happy.

May God Bless you all,
The West Family

Progress

2010-10-24T08:48:00.002-04:00

First, let me apologize for the delayed update. Now that Tristan is in recovery, I have less time to be on the laptop, but that means more time with him!

Friday was a good day. We were able to get a handle on his pain control (except when picking him up or trying to move him.) The ortho residents changed the dressing - I am amazed at how much straighter his back is now. He had some great milestones on Friday. I was able to hold him in a chair and not the bed. The nurse took off the majority of his monitoring leads, which makes it easier to move him around. Tristan sat on the edge of the bed AND he took three steps. Later in the evening he took his longest walk, yet about 25 feet. Afterwards, Becky said he was exhausted and cried "up" and she had to carry him the last few feet to his room. We are amazed at this progress, we were under the impression it would be another day or two before he really started to move.

Saturday, started off really rough. I got to the hospital about 7:30am. Becky has spent every night with him. I have tried to get back to the RMH so that Addison had some normalcy with me there each night. (Even though Aunt Debbie is with her.) Anyway, when I walked into the room he started crying and then the crying turned to shrieking. Apparently, Tristan's medicine was delayed a bit in the night. (I don't know what the nurse was thinking to skip it just because he was sleeping.) The poor little guy was miserable. I tried to hold him to comfort him, but that didn't seem to work. Then, his diaper leaked and he peed all over me. He had to be changed (and so did I.) While changing him we noticed that his skin rash was getting worse. He already has had some skin break down, but now he has gotten a skin rash. We think he is allergic to the sticky pads of the leads and tape. So along with some oral meds, he was also given a round of IV Benadryl....he was OUT! He slept for about 4 hours and woke up a new little boy.

Upon awaking he watched the Spartan's go to 8-0 and then a little DVD of Thomas the Train, who he has fallen in love with this trip. (Guess, I'll be investing in train stuff for Christmas.) After the movie, Aunt Debbie cuddled up with him a bit...and then she asked him to show her the playroom. He agreed to be moved (even though it hurts) and off we went. A few minutes later he found a vacuum and just had to push it...I think he pushed it down the hallway at least three times. Amazing! Later, he was able to get into a kneeling position on his own to play with another toy. He still has a solemn expression, but you can see some of the pain in his big brown eyes disappearing. He isn't quite back to his old self, but I see some glimpses. He is also starting to say a few more words again and wants to communicate a bit more. I know we did the right thing for him by bringing him here, but seeing him walk straighter makes me feel even better about it all.

It appears that things are still on schedule and we'll be able to make it back on Tuesday afternoon to Michigan. We appreciate all of you continuing to support us and for your prayers for our sweet little man.

Ouch

2010-10-21T17:11:00.000-04:00

This post will be short and sweet. Not much new to report.

Tristan has now been out of surgery for over 24 hours. He has shown good, but slow progress. Pain management seems like it is finally working and he is able to be as comfortable, as possible. We are able to get some smiles out of him. He was actually most alert when his Big Sis, Addison came in to seem him. She brought him an octopus from the aquarium she visited with Aunt Debbie today and he seemed to enjoy that.

He is taking food and drink orally, as well as his pain meds. This was a crucial point for him to get to so he would be able to move out of the PICU. They have ordered a bed on another floor for him, but we are still waiting to move. I don't mind waiting, though because Tristan gets more one on one attention while in the PICU. All the nurses think he is adorable, which he is, as he looks just like my wife.

His favorite word right now is "no". And it is so sweet when he says it. So every time we ask him to take one more bite or one more sip, all we hear is...."no", but sometimes we can still coax another bite or two. He seems to really enjoy sliced bread and apple juice today, oh yes, and some of Becky's cheese popcorn.

The nurses have removed more tubes/wires from him today. His arterial line was removed and his EKG tabs have been pulled off him. He still has two IV lines and some leads monitoring his respiration's, heart rate and blood pressure. He had a low fever today and his heart rate has been staying about 140 today, which we would prefer to see a bit lower. As the pain goes away we assume his heart rate will drop to normal.

He is a tough little kid and with all the blessings from God he has been able to start this journey. We thank you all for your continued support and all the wonderful thoughts/emails you sent our way. We hope to post tomorrow from a new floor in a new room at this wonderful children's hospital in Philadelphia.

Good night and God bless,
Adam, Rebecca, Addison & Tristan

Surgery Day Timeline

2010-10-20T16:17:00.000-04:00

We thought we would do the post a little different today. Since we are getting updates on a regular basis we are going to share those updates. Of course we won't post them all until Tristan is out of surgery, but at least you can see how the day went.

Wednesday, October 20th 2010.
4:30am - Alarm goes off. I (Adam) am the only one out of bed and was able to shower and use deodorant.
5:01am - Becky gets up.
5:25am - Kids wake up and get dressed.

5:25am - Out the door at the Ronald McDonald House and into a taxi.
5:40am - Arrive at the Children's Hospital of Philadelphia (CHOP).

5:45am - Arrive at Surgery Reception.
6:10am - Becky and Tristan go back to prepare for surgery.
6:15am - Addison and I wait to see Tristan before surgery.
6:20am - Addison and I wait to see Tristan before surgery.
6:25am - Addison and I wait to see Tristan before surgery.
6:30am - Addison and Iwait to see Tristan before surgery.
6:35am - Addison and I wait to see Tristan before surgery.
6:40am - Addison and I wait to see Tristan before surgery.
6:45am - Addison and I wait to see Tristan before surgery.
6:50am - Addison and I wait to see Tristan before surgery.
6:55am - Addison and I wait to see Tristan before surgery.
7:00am - Addison and I wait to see Tristan before surgery.
7:05am - Addison and I wait to see Tristan before surgery.
7:10am - Addison and I wait to see Tristan before surgery.
7:15am - Nurse finally comes to get Addison and I. She breaks some rules, but understands that this is a major surgery and that Addison needs to see her baby brother before he is taken to surgery. (Whew, it took about eight times typing that before I realized that I should copy and paste.)
7:20am - Tristan gets "giggle juice".

7:35am - Tristan is wheeled away to surgery.

7:36am - Addison, Becky and I are escorted to the surgical waiting area. Adam takes "giggle juice" (kidding, I was seeing if you were still reading or not.)
8:30am - First update from operating room: Tristan is asleep and the breathing tube is in place, surgical team are still trying to get his body comfortable, taking into account his contractures.
10:00am - Second update from the operating room: Tristan is doing great; procedure started at 9:25am and they are surgically getting to where they need to install the VEPTR.
10:15am - "Missy", Becky's sorority sister arrives to help us during this waiting period.
10:25am - Addison and Adam walked two blocks to the train station to pick up Aunt Debbie.
10:40am - Third update from the operating room. The VEPTR has been installed and they are starting to close.
11:15am - Becky and I (Adam) meet with Dr. Flynn. The surgery has gone faster than expected; and things went beautifully. The only real concern is for the hook that went into one of the lower vertebrae...Tristan didn't have enough skin to cover it completely. They had to use some of his muscle to cover and there is a risk of infection or skin break-down. Good news: A longer VEPTR was used, which will mean the next major surgery will be pushed out further.
11:50am - Tristan is completely out of surgery and is moved to the PICU, We are moved to a new floor and are waiting to see Tristan for the first time.
12:20pm - We (Becky and I) are able to hold Tristan's hand and comfort him. He looks great. A lot better than what we expected. The pictures below show minimal swelling. Once he wakes up, the PICU team will start the pain management portion of his recovery. Tristan is coming in and out and giving little bursts of cries, which is really tough to watch.

2:50pm - Dr. Flynn comes in to check-in and talk about curvature changes. If you remember during our pre-op appointment, Dr. Flynn said that Tristan's spine was at 91 degrees (a ten-degree change for the worse since our July visit.) Dr. Flynn hoped through surgery to at least stop the progression and at best get Tristan to 75 degrees. (Enter GOD, The Great Physician) Post-op curve: 53 degrees!!!! (Tristan is coming home taller and will have much more room for proper organ growth.)

Today has been incredible and we thank you all for standing in prayer and support with us. This journey is far from over as the recovery is tough. We hope Tristan will be leaving the PICU in the morning and we'll update again tomorrow.

God Bless You All!
Adam, Rebecca, Addison and Tristan

Pre-Op Testing

2010-10-19T16:55:00.000-04:00

First full day in Philadelphia and I (Adam) have to tell you that I stink...if you were to walk past me, you would move a little faster hoping that I would not stop to talk to you. Now let me tell you why and yes, I know, TMI. When packing I laid out all of my toiletries on the bathroom counter in the new master bath. Lined them all up really nice, that's the OCD-side of me. Then along comes Becky, she comes in and packs up her stuff, but realizes she wants to smell like the man in the Old Spice commercial. So she grabs my "manly" scented deodorant and proceeds to use it on herself. Then she does something incredible...she actually puts something away...and she puts it in the bathroom drawer. Anyone want to guess what was not in my bag after I showered this morning?

So despite my stench, we were able to make it to all of Tristan's pre-op appointments. Becky actually let us takes a taxi because it was raining. First, was the appointment with Anesthesia, which went smoothly. Next, Tristan had some blood work and the brave little guy didn't cry when they took the two vials of blood. We moved onto x-ray films. (We are getting to know the hospital pretty good now.) Lastly, we were able to go to Ortho for our meeting with the nurse practitioner and finally Dr. Flynn to go over the surgery in detail.

The news from Dr. Flynn was that Tristan's curve was now at 91 degrees. Dr. Flynn said that Tristan's spinal curve was like "a car rolling down a hill just waiting to crash." In just three months, there had been a 10 degree change for the worse. We are very fortunate that God made it possible to have Dr. Flynn do this surgery sooner rather than later. Dr. Flynn had told us in July he didn't feel that Tristan could wait until 2011 for this surgery - and he was right.

Alright, onto the specifics of the surgery…due to Tristan's size, Dr. Flynn & team will only be putting in one VEPTR rod. (Eventually, they hope to do two.) This rod will attach to two ribs on Tristan's upper left side and also to a lower vertebra at the base of his left side. The rod will be titanium and will be able to expand as more surgeries are completed. They will do all of this through two incisions, but they will be detaching and reattaching muscle to get to the ribs, so recovery will be tough. One of the members of Flynn's team will be monitoring brain/nerve control throughout the whole procedure, so as to place the VEPTR rod in a location that will not create nerve damage. The good news (yes, there is good news) is that Dr. Flynn believes that the 91 degree curve may improve to 75 degrees upon the completion of this surgery!

We are to arrive for surgery at 6am tomorrow morning. It is likely that the surgery will begin by 7:30am. It will take approximately five hours to complete. Once Tristan is starting to come out of anesthesia, we will be able to see him. I have mixed feelings about this reunion. I know in my heart that I want to see him. But I also know that I am not prepared for what I am about to see my son go through. I am even tearing up as I write this. My prayer is that God will give me the strength to be there for Tristan and Becky.

Please join us in prayer tomorrow morning for Tristan, and also for every hand/eye in that operating room. I want God, the Great Physician, to be leading and guiding their hands as they take care of my son.

In the mean time, if any of you were worried, I was able to buy deodorant and take another shower...so the family is willing to associate with me again. The kids have actually fallen asleep together on the bed and Becky is grading papers for one of the many classes she teaches. We will spend the rest of the night having dinner and playing around the Ronald McDonald House. Maybe we'll go out and grab some gelato as a special treat for the little guy.

We will update the blog tomorrow evening after Tristan's surgery is completed. Knowing that we will be able to share with all of you how God held Tristan's hand and ours throughout this entire process.

May God bless you all for your faithfulness,
Adam, Rebecca, Addison and Tristan

Day Of Travel

2010-10-18T20:34:00.000-04:00

Those of you that know what it is like to travel with children or a group, should appreciate this.

I (Adam) am a very organized and preplanned individual. That's right - I have a plan. I have had the travel information and documents prepacked in my bag for days. My better half (Becky and the kids) on the other hand have no sense of staying on schedule when it is time to travel. It's almost as if time itself stands still for them. Maybe that is why Addison's idea for her Fall Harvest costume being a clock, set well with me. I thought it might be a good lesson in time. But as you can see from the photo below, the time is stuck. Hmmmm...

tick-tock

Well, my goal was to have the car packed at 10am...we had it packed by 11am. My goal was to be on the road by 11am, and we left at 11:15...so I guess overall that was pretty good.  The ride down to the Detroit airport went off without a hitch. Thanks to The Edward (Becky's Dad) for playing taxi driver (and Uncle Tim, too!) Once inside the terminal, we were able to check our luggage, get our boarding passes and drudge through the security line, all with enough time to have a lunch and board the plane.

Once on the plane, Tristan decided to show some major attitude and be the loud screaming kid for the first 40 minutes of the flight. After rows of people stared and some glaring Tristan finally passed out and slept for the remainder of the plane ride. Whew!

Once on the ground in Philidelphia, I was able to contact the Ronald McDonald House (RMH). When I did so earlier in the morning, they did not have a room available for us, but this time they did. So our backup plan at the hotel was not needed. Thank you Lord for this wonderful blessing.

Once we got our baggage, Becky decided to throw a wrench in my plans. I had planned to have a shuttle take us to the RMH. She decided that taking the train with two large suitcases, two car seats, four carry-ons, a stroller and two kids (one of which would not ride in the stroller) would be the best option (cheaper). Once we got off at the University Center train staion, she said "Let's walk from here to the RMH." So all of the items listed above, now were carried and/or pushed eleven city blocks. Of course as Becky would tell you, "we saved eleven dollars." So I guess we saved one dollar per block.

Side note to Ryland (my trainer) - I carried the two large suit cases and two car seats. Hopefully, this counts as my workout for the day. :-)

Once we arrived at the RMH, we have seen nothing but the warmest of hospitality. We entered and heard music playing on the piano, and Becky was practically in tears with relief. Upon check-in the kids were immediately spoiled by picking their own presents & books from the gift chest. (Tristan picked an Ironman figure and Addison a little doll figurine.)  The facilities are great and there are two wonderful play areas for the kids. Tristan had to be pulled away from the train table this evening. In addition to playing, we were also well fed and have been blessed with one of the dinners furnished by volunteers.

Tristan playing with the trains at the RMH.

Now it's time to get some sleep and prepare ourselves for all of Tristan's pre-op appointments tomorrow. Our first one is at 8am and then we have another at 9am. We hope to find out all the final details of the surgery and find out what time surgery will be on Wednesday.

Thanks to all for your continued prayers and all the wonderful notes we have received.

God Bless!
Adam, Becky, Addison and Tristan

Why we are here? Why is Tristan having surgery?

2010-10-11T00:09:00.005-04:00

Many of you know Tristan’s story, but we thought it best to put it in writing so everyone knows the complete history.

It was February 2008 when we found out Becky was pregnant. It brought us much joy as we had been trying for our second child for some time. Along with the excitement, also came the worry of congenital defects. I (Adam) only have one kidney and with Becky having Congenital Contractual Arachnodactyly (CCA), we knew there was a 50% chance of our baby having either or both issues. At the sixth week of gestation, we started having ultrasounds and hoped to rule out any concerns.

It was during one of the many tests and ultrasounds that the doctors were able to begin to diagnose Tristan’s medical conditions. First, the doctor noticed that he had only one (solitaire) kidney, which also explained his single umbilical artery. Second, there were contractures of his knees and elbows, which confirmed that he had CCA. Third, an extra rib and hemi-vertebrae were found, which was something very unexpected. Although, finding all of these things in utero made us anxious, it also made it possible for us to specifically pray for the guidance in how to tend to Tristan’s long-term care.

In the months prior to his birth, we continued to see many medical doctors and planned for the possibilities of having a child with several medical conditions. When Tristan was born on October 7, 2008, he did spend 26 hours in the NICU and had several tests, but surprisingly although small was doing very well. The cardiologist saw him within his first few weeks and happily announced that she could clear him 100% for the minor heart issues found during his time in the NICU. The Ophthalmologist also cleared him after two visits before age one. After a few visits and ultrasounds with the Nephrologist (kidney doctor), the solitaire kidney proved healthy and to-date, he has been cleared until age four for follow-up.

The Physical Medicine/Rehabilitation doctor, who we saw prior to his birth, continues to monitor Tristan for his CCA. Since about one month of age, Tristan has been going to PT/OT once a week. Part of this connective tissue disorder leaves Tristan without the ability to straighten his knees and elbows, but with nearly two years of PT, we have seen significant improvement in Tristan’s ability to straighten his legs. We are now starting to discuss a more in-depth plan for getting his elbows to extend as well. At this time, continued therapy to help curve the affects of the CCA is our plan. CCA can have spontaneous improvement and we pray that he will be able to have full motion of his joints in the near future.

Tristan sees an Orthopedic surgeon for his most threatening condition, a hemi-vertebra (and extra rib.) By definition, the hemi vertebra is “a vertebra that is incompletely developed on one side”. Therefore, it creates a “wedge” in the spine that forces scoliosis. Tristan was born with a 30-degree curvature in the spine, because of this condition. In less than two years, the main curvature has worsened to 81 degrees, while adding two other smaller curvatures to compensate and to keep his head upright. Because of the rapid increased degree in curvature, surgery has become a necessity. Without the surgery to stop the curvature, we run the risk of the spinal column being pinched, which would leave Tristan paralyzed.

3D Composite of Tristan's Spine taken 9/7/2010

The first initial thought was to remove the hemi vertebrae and fuse the surrounding vertebra. This option would have shortened Tristan’s trunk and could have caused organ displacement as he grew. After Tristan’s Orthopedic surgeon reviewed the case more closely, it was determined that the fusion would not create enough stability. So after consulting with many other surgeons across the country, a decision was made to install a Vertical Expandable Prosthetic Titanium Rib (VEPTR).

There are only a handful of surgeons in the U.S. that do the VEPTR surgery, so in June of this year we began praying that God would lead us to the right surgeon. Although there is a surgeon at the UofM Childrens Hospital, which would be geographically convenient, our prayers and research led us to see Dr. Flynn at the Children’s Hospital of Philadelphia (CHOP). Dr. Flynn is the partner of the doctor who invented this procedure, which increased our confidence and if that wasn’t enough we also posed the questions to Tristan’s Orthopedic Surgeon here in Michigan, “If this was your child, and money and distance were not a question, who would you have do the surgery?” His answer was go out of state…see Dr. Flynn. Although everyone’s circumstances are different when faced with a decision of this magnitude, we are comfortable that the Lord has led us to the correct place.

We met Dr. Flynn in early July and we felt God’s peace immediately and knew we had met the doctor that would help our son. Since then we have been going to doctor’s to complete all of the pre-op care (including a complete pulmonary workup.) We have been making plans for the surgery, travel, and all of the post-op care. We leave for Philadelphia on Monday October 18 and Tristan’s surgery is scheduled for early morning on Wednesday October 20.

This first initial surgery will take about five hours. Tristan will need to be in the NICU for two to three days after surgery, and he will then remain in the hospital for another three to five days, assuming there are no complications. Once the VEPTR is attached to Tristan’s rib and vertebra, he will have to return every six months to have adjustment surgeries. This means we are looking at approximately 20-24 surgeries over the next twelve years. Every two to three years, Dr. Flynn will need to install a new VEPTR. The goal is to get Tristan to age twelve or thirteen when his spine will be fully matured and then he will have a final corrective spinal surgery.

It has been a long challenging road, and we know it is just beginning. We are so very humbled by all of the prayers and support we have received already and thank God for placing each of you in our lives. We ask earnestly that you will add Tristan’s name to your daily calendar on the day of his surgery and the days that follow during his recovery. Thanks for joining the blog, and we will continue to update Tristan’s progress during this incredible process.

God Bless You All!
Adam and Rebecca West
Addison & Tristan