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. :-(
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