Always travel with a nanny.

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

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…..

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

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

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

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