7mm

We just met with Dr. White, and Tyler is out of surgery. It went really well, and Dr. White was able to get a 7mm expansion on the VEPTR this time. He did discuss the possibility of adding another rod to help support Tyler's scoliosis in a few years. The one rod is doing it's job, but it looks like he could use more support. Even with his current VEPTR, Tyler still has a significant curve. Dr. White said we will just wait until his rod needs to be replaced and evaluate then (in a few years). Now we are just waiting for him to wake up so we can see him. It is incredibly hard to watch him walk away with Joey and the doctors for surgery. I just can't wait to see him and give him a hug. He is such a brave kid! Thank you all for the prayers and love!

Time for Expansion #3

I can't believe that it is surgery time again! We spent 4 hours today at Seattle Children's Hospital for Tyler's pre-op visits. Tomorrow morning we will check in for his 3rd VEPTR expansion surgery. Tyler bounced back pretty qickly after his last expansion in January. I never updated the blog, so here is the quick recovery story. Tyler managed the pain really well, only needing Tylenol or Ibuprofen for pain. He was sick from the anesthesia, but after a while he began to try food and was able to keep it down. He even took a trip downstairs to the playroom where some UW Husky football players were visiting to play and hang out. We were able to check out after 9pm. I really hope that we will not need to stay that long tomorrow. We did have one issue. Tyler developed an itchy, red, bumpy rash all over his back. It appeared to be only in the area that was exposed in the OR. The rash made him pretty uncomfortable, and made it even harder to keep his hands from scratching at and around his incision. Tyler is a picker, so even though Dr. White prefers to keep the incision open to heal, I cover it with a bandage. Unfortunately, the bandages only made the rash more irritated and painful, so I couldn't keep them on him. The rash eventually went away, but to make a long story short; the incision took about 3 months to heal. It was quite the battle. I wanted to keep the incision uncovered and clean, but Ty just would not stop picking at it. Again, I am hoping for a different outcome this time. We did speak to Dr. White about this today and he thinks Tyler might be allergic to Isoban, something they use in the OR for surgery. They will not be using it tomorrow. Apparently they used it in all of his previous surgeries, but he just developed an allergy to it. Crazy. Even though the healing of the incision was a lengthy process, I do want to mention...no, CELEBRATE his quick return to normal activities. Tyler is such a trooper! He runs, jumps, wrestles with his dad and plays soccer. He skis, swims, and is getting really good at mountain biking. Tyler is a very active kid, and unless you looked at him without a shirt, or studied the slightly off balanced appearance of his torso, you might never know that he even has congenital scoliosis. So tomorrow is surgery again, and as always, Tyler is now voicing his feelings. He doesn't want surgery, and who could blame him? I don't want it either, but I try to point out the benefits of having a straighter spine. It is hard to see him scared and it breaks my heart each time he admits that he is scared. I don't know if it will ever just become routine. Please pray with us for an uncomplicated surgery and quick recovery. I'll post more tomorrow when he is out!

Home Sweet Home

Today we made the drive home to Wenatchee. After Tyler was released Tuesday night around 9:30, we headed back to the hotel. Joey and I did not want to push Tyler too far and drive home. So, after a good night of sleep, we headed home this morning. We stopped a few times to break up the ride for Tyler, and that worked out well for us. He was sleepy and less active than we are used to, but that was expected. He had some pain, but we were able to manage it with Tylenol and Ibuprofen. It was obvious to us when the medicine started to wear off; Tyler began to look sleepy and slowed down significantly. Once the meds kicked in, he perked right up! He couldn't wait to get home to see his sister, Kaitlyn, and play with his toys. He is an amazing kid. He just keeps going, and his smile and energetic personality make us just want to smile with him. We are so blessed that Tyler is our son! I have some great pictures of him smiling in the hospital that I will post later.

Tyler is back

Tyler was pretty sleepy when he was wheeled into the room a little over an hour ago. His nurse took him off oxygen and he smiled for a few pictures. Nancy, one of the Child Life Specialists brought him a small LEGO set and that perked him up a little. His smile didn't last long. The anethesia is making him sick. Tyler has not been able to keep anything down, so his nurse just got him another dose of anti-nausea medicine. We are hoping that kicks in and he feels better soon. He can't be released until he is eating and drinking well, among other things.

Waiting for Ty

Today is about waiting. We arrived at the hospital on time and even went back to the surgery prep area on time, but then the waiting began. We talked to a nurse who told us that the doctor would be in shortly to see us. We waited. An hour and 15 minutes past the time his surgery was scheduled to begin I popped my head out of the room to see what was up. The nurse let us know that Dr. White's first surgery of the day was taking longer than expected and they would be with as soon as possible. My heart goes out to that family. I know I watch the clock closely when Ty is in survey, and I can imagine how scary it would be for surgery to go past the estimated time frame. We were getting concerned that Tyler was going to complain about being hungry, but he stayed busy with playing with the remote control car from Nana and Papa, books and youtube videos. He had a few rough patches emotionally as well, so I didn't want him getting worried again. Just before we left the hotel this morning Tyler got pretty emotional, telling us that he didn't need surgery, begging to just stay at the hotel all day. He has been a really strong kid leading up to today, which helps me keep it together. It makes it so hard to hide my feelings and put on my brave face when I see him scared. Anyways, the time eventually came for him to go and Joey walked him to the OR. That was really hard for me because I was the one to take him back for the other surgeries. He just hugged me and walked away for surgery, and I was left alone in the pep room with my thoughts and fears. We waited an hour and received the page that he was done. Dr. White met with us and said that everything went very well. He was able to get about a half of an inch expansion this time! He gave us the locking clip to about the size of a small 1 x 2 lego that he had just taken out of Tyler, and that was it. Now we are just waiting in his room for him to arrive. Tyler's nurse, Leslie, just let us know that he is doing well in recovery, but is still too sleepy to come to his room. They want him to be more awake and alert before he leaves the recovery room. Until then we wait.

Fun the day before surgery

Tyler was so excited to ride the train to Seattle! He loved it and watched out the window most of the trip.

Once we arrived in Seattle, we spent a few hours walking around downtown. We rode the monorail and sat in the very front next to the driver. She was very nice and even let Ty honk the horn. He had a permanant grin for the entire ride after that.

Tyler's pre-op appointments went well. His x-rays appear to confirm my opinion that he is not as straight as he was 6 months ago, but are not conclusive because he is standing in a slightly different posistion in the previous x-ray.

Surgery is scheduled for 9:30 today, and I will post updates later when I know how he did. Thanks for the prayers and well-wishes for a safe surgery!

All Aboard!

Tomorrow Tyler and I will catch the early morning train to Seattle for his pre-op appointments. He is so excited to ride the train that he actually told me that he is excited for his surgery. I know that he is actually not excited about the surgery. I'm not excited about it either but if he does as well as last time I will be happy. Tyler's surgery is Tuesday at 9:30, so I will post updates as we get them.