Waiting

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

Addison having a muffin and hot chocolate.

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

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

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

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

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

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

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

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

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

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

Surprise!

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

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

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

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

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

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

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

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

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

Sorry! I'm a slacker.

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



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


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

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

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

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

God Bless,

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

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