Tyler was diagnosed with congenital scoliosis when I was still pregnant with him. Although he was and is otherwise healthy and active, he has a significant curve (about 80 degrees) in his spine. We are greatful that we were able to simply monitor his growth and the progression of his curve for the last 5 years. Now, it is time for his first surgery. My name is Sarah and my husband Joey and I want to share Tyler's story with anyone who it can help.
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Friday, August 23, 2013
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!
Thursday, August 22, 2013
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!
Wednesday, January 30, 2013
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.
Tuesday, January 29, 2013
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!
Sunday, January 27, 2013
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.
Last June...
I realize that after Tyler's last surgery, I did not update his progress. Here it is!
At home Tyler continued to recover quickly. He needed Tylenol for pain, but he only needed it occasionally and for only the first few days following surgery. His incision was about 2.5 inches long, and was glued instead of stitched. Although he was making a quick recovery and he felt good enough to play as he did before surgery, he couldn't do what he wanted to do the most: swim. Tyler was not allowed to be submerged in water for 3 weeks following surgery and he did not understand why. It was very emotional for him because it was the beginning of summer and we usually spent most weekends at my sister's pool. To help him through the tough situation, we bought large waterproof bandages and a friend sent us some dermabond. We used those and allowed Tyler to float on pool floats and sit on the pool steps as long as he did not submerge his incision.
We immediately realized the error in our plan to schedule surgeries in the summer and winter. We asked Tyler's surgeon, Dr. White to shift the schedule of future surgeries so they did not fall in the summer. He was very understanding and assured us that it would not be a problem at all. We felt good that Tyler's emotional well being was important to his doctor and planned to schedule the next one in late January or early Febuary. That catches us up to thepresent! : )
I'm sorry that it took me so long to update. Tyler recovered so well that I just got caught up on the every day dealings of life, but I did feel that it was still important to post.
| Tyler and Daddy walking out of the hospital. Look how straight Ty looks! |
| Tyler sitting on the top step in Aunt Vanessa & Uncle Jim's pool just a few days after surgery. |
I'm sorry that it took me so long to update. Tyler recovered so well that I just got caught up on the every day dealings of life, but I did feel that it was still important to post.
Wednesday, June 20, 2012
He's out!
Tyler's recovery went better than we could have hoped for. After he ate lunch he became more and more active. We knew it was time to check out after we took him down to the kids playroom. Tyler spent his time riding a trike around and around the playroom dinging the little bell all the way. He actually began running down the hall on the way out! We had to call him back and remind him that he needed to slow down.
We decided to stay near Seattle despite his remarkable recovery. It turned out to be a good plan. Out good friends invited them to stay with them, and the hour drive up to Lynnwood was about all Tyler could take. So far he has only had two doses of Tylenol and one dose of Ibuprofen at bedtime to manage the pain. We were sent home with Oxycodone, but I don't think we will be neeeding it. It is such a blessing that his surgery went so well and that the recovery has been so smooth so far.
After surgery
We are waiting in the room for Tyler to come up. The nurse just poked her head in and said she heard that he is doing well and should be up soon. This waiting to see him is hard! I am anxoius!
Later:
Ty arrived around 10:40. He is sleepy but much more alert than the initial implant surgery. Tyler even climbed from the stretcher to his bed all by himself! His incision is bandaged so I couldn't get a look at it. The nurse offered him a popsicle and he gobbled it all up. Now he is resting and watching Thomas the Train. He really wants the IV line out but we need it in until he is eating and drinking without any problems. We think he will be able to be released today.
Expansion time
Tyler is in surgery right now. Today is his first VEPTR expansion. He was such a big boy this morning. He was calm and energetic. I know that sounds like a weird combo, but I guess I just mean that he was not acting too worried about the events of today. Yesterday Joey gave Tyler a new LEGO jet plane and that was the toy Tyler decided to bring with him into the OR. He flew that jet all around the hotel room and waiting areas at Children's this morning. I took a before picture of his back, but I can't download it to this computer. I guess I will just have to put it on later.
We are slightly more at ease having done this before, but it is still incredibly difficult to walk him back to the operating room. Tyler had visited with Nancy (the child life specialist) as we waited and she gave him stickers to decorate his mask. He took it into the OR and told the anesthesiologist that he wanted a root beer mask. I was impressed at how well Tyler stayed still as I held the mask over his mouth and nose, and he just went to sleep.
Dr. White expects this expansion to be pretty quick, about 45 minutes. I expect to be getting a page from the OR nurse pretty soon to let us know that all is well and Tyler is almost done. Then we will meet with Dr. White and he will give us the clip that has been holding the rods in place. We should get to see Tyler in a couple of hours and he may be discharged today. Tyler was relieved to find out that the doctors expect him to walk today. That is one of the things that bothered him most after the VEPTR implant, having to use a wheelchair and the fear of walking. We will see how things go. I don't want to drive all the way home today, so if we are released the plan is to stay somewhere close to the hospital and make the 3 hour drive home tomorrow.
We are slightly more at ease having done this before, but it is still incredibly difficult to walk him back to the operating room. Tyler had visited with Nancy (the child life specialist) as we waited and she gave him stickers to decorate his mask. He took it into the OR and told the anesthesiologist that he wanted a root beer mask. I was impressed at how well Tyler stayed still as I held the mask over his mouth and nose, and he just went to sleep.
Dr. White expects this expansion to be pretty quick, about 45 minutes. I expect to be getting a page from the OR nurse pretty soon to let us know that all is well and Tyler is almost done. Then we will meet with Dr. White and he will give us the clip that has been holding the rods in place. We should get to see Tyler in a couple of hours and he may be discharged today. Tyler was relieved to find out that the doctors expect him to walk today. That is one of the things that bothered him most after the VEPTR implant, having to use a wheelchair and the fear of walking. We will see how things go. I don't want to drive all the way home today, so if we are released the plan is to stay somewhere close to the hospital and make the 3 hour drive home tomorrow.
Tuesday, June 19, 2012
Tyler's first expansion
Friday, March 9, 2012
The next one
It has been a while since I posted, and that is actually a very good thing! Tyler is getting around great. He is running, jumping, riding his bike and just being a crazy kid. We are so happy that life is normal. One of my concerns going into this VEPTR process was that life would be dramatically altered. Of course, things are different, but not in a way that impacts us or Tyler on a daily basis.
Luckily, the VEPTR rod is not hurting Tyler much. Last Saturday Tyler was jumping off some steps at his school during the Dr. Seuss Birthday party event, and on the way home he began having sharp pains in his back. I gave him some ibuprofen and he was fine after that. Although we are not sure exactly what caused the pain, we think it was either muscle spasms or that the pain was caused by the jumping he had been doing. Other than that incident, he only time he mentiones discomfort is when I hug him too hard or if he gets too rough wrestling with Joey. Even then he just tells us that his back hurts when he does something specific, then he moves on.
It is hard for me to think about the upcoming surgeries since it just seems like we finished the last one. Those surgery schedulers have a different mindset. They needed to get Tyler's first expansion scheduled, so last week they called and they gave me a date. It was a good thing, to get the date scheduled so we can plan around school, but it made me sad at the same time. I know what we have signed on for. I knew it when we decided it was finally time to get the initial VEPTR implant scheduled. That is just one of the hardest parts for me, and sometimes I wonder if I am being a bit dramatic about all of this. But the reality of this is that Tyler will need to have the rod expanded every 6 months. He will also grow out of this rod in about 3 years and it will need to be partially replaced. Althougth these upcoming surgeries are supposed to be "smaller" and quicker than the first, it still bothers me. I guess I just wish this was not a part of Tyler's life. I don't like that he will get used to going to Children's for surgeries. Despite these feelings, I know it is necessary and I am thankful for this option because I know the alternative is not great.
Enough of the complaining. The date is set to expand Tyler's VEPTR on June 20th, so until then we will just live life! I think that is all we really can do, just deal with the expansions when we have to and live normally in between.
Luckily, the VEPTR rod is not hurting Tyler much. Last Saturday Tyler was jumping off some steps at his school during the Dr. Seuss Birthday party event, and on the way home he began having sharp pains in his back. I gave him some ibuprofen and he was fine after that. Although we are not sure exactly what caused the pain, we think it was either muscle spasms or that the pain was caused by the jumping he had been doing. Other than that incident, he only time he mentiones discomfort is when I hug him too hard or if he gets too rough wrestling with Joey. Even then he just tells us that his back hurts when he does something specific, then he moves on.
It is hard for me to think about the upcoming surgeries since it just seems like we finished the last one. Those surgery schedulers have a different mindset. They needed to get Tyler's first expansion scheduled, so last week they called and they gave me a date. It was a good thing, to get the date scheduled so we can plan around school, but it made me sad at the same time. I know what we have signed on for. I knew it when we decided it was finally time to get the initial VEPTR implant scheduled. That is just one of the hardest parts for me, and sometimes I wonder if I am being a bit dramatic about all of this. But the reality of this is that Tyler will need to have the rod expanded every 6 months. He will also grow out of this rod in about 3 years and it will need to be partially replaced. Althougth these upcoming surgeries are supposed to be "smaller" and quicker than the first, it still bothers me. I guess I just wish this was not a part of Tyler's life. I don't like that he will get used to going to Children's for surgeries. Despite these feelings, I know it is necessary and I am thankful for this option because I know the alternative is not great.
Enough of the complaining. The date is set to expand Tyler's VEPTR on June 20th, so until then we will just live life! I think that is all we really can do, just deal with the expansions when we have to and live normally in between.
Monday, February 6, 2012
New after pictures
Here are a couple of new after pictures. Tyler's back is healed so well that the incisions are a little hard to see in the picture, and I celebrate that! I don't know if I mentioned this before, but Tyler has also grown about an inch since the surgery straightened his spine.
Post-op update
Life has pretty much returned to normal! I know I never updated after Tyler's post-op appointment, so here is how it went. We did not expect to have more x-rays, but the doctor wanted updated ones. Then we saw our new doctor, Dr. Klane White at Seattle Children's Hospital. We liked meeting with him and although he was obviously very busy, he still took the time to answer all of our questions. He showed us Tyler's x-rays and was happy with the placement of the VEPTR rod. He looked at Tyler's incisions and he said they were healing nicely. Joey and I were excited to learn that Tyler really has very few restrictions now that he is getting back to his active self. Dr. White reminded us that all activities have some level of risk, but that it is very important to let Tyler just be a kid. We just need to be aware that some activities carry a higher risk (of breaking the rod or knocking it out of place) than others. He did say that football and wrestling are sports Tyler should not participate in, but that Joey can take Ty skiing.
The only disappointing part of the appointment was when Dr. White told us that he will begin the paperwork to schedule the next surgery. I know that surgery schedules a few months out, but it was just not what we wanted to hear. We finally feel like life is getting back to normal, and here we go scheduling the next surgery. I know that it is part of the VEPTR process. Once the initial implant is in, the VEPTR has to be lengthened every 6 months. I guess we need to get used to that being part of our normal.
After Tyler impressed the doctor and nurse with his movement, we spent some time with my friend Jessica who lives in Green Lake. She is and inspiration to many as she battles brain cancer with a healthy lifestyle and an outstanding attitude. Jess has such a positive outlook on life and is quick to remember and remind everyone to have compassion and understanding for others. You can check her story out on her blog www.jessicaoldwyn.blogspot.com. We had a fun time hanging out and she even took us on a little walk to Green Lake!
After a fun weekend we came home and remembered one of the questions we forgot to ask Dr. White. Tyler had been having some intermittent pain in his right arm, right at the armpit area. We were concerned that it might be related to the VEPTR implant because the pain was on the right side, the same side as the implant. After a quick call to Nicole, Dr. White's nurse, I was reassured that although the pain may be related to the VEPTR, it was not something to be concerned about. As long as Tyler was not experiencing anything that might indicate a neurological problem, like numbness, he was OK. Over the past week, it seems like Tyler is complaining of the pain less and less. He is still more emotional than he was before surgery, but we are hoping that will return to normal soon as well.
The only disappointing part of the appointment was when Dr. White told us that he will begin the paperwork to schedule the next surgery. I know that surgery schedules a few months out, but it was just not what we wanted to hear. We finally feel like life is getting back to normal, and here we go scheduling the next surgery. I know that it is part of the VEPTR process. Once the initial implant is in, the VEPTR has to be lengthened every 6 months. I guess we need to get used to that being part of our normal.
After Tyler impressed the doctor and nurse with his movement, we spent some time with my friend Jessica who lives in Green Lake. She is and inspiration to many as she battles brain cancer with a healthy lifestyle and an outstanding attitude. Jess has such a positive outlook on life and is quick to remember and remind everyone to have compassion and understanding for others. You can check her story out on her blog www.jessicaoldwyn.blogspot.com. We had a fun time hanging out and she even took us on a little walk to Green Lake!
After a fun weekend we came home and remembered one of the questions we forgot to ask Dr. White. Tyler had been having some intermittent pain in his right arm, right at the armpit area. We were concerned that it might be related to the VEPTR implant because the pain was on the right side, the same side as the implant. After a quick call to Nicole, Dr. White's nurse, I was reassured that although the pain may be related to the VEPTR, it was not something to be concerned about. As long as Tyler was not experiencing anything that might indicate a neurological problem, like numbness, he was OK. Over the past week, it seems like Tyler is complaining of the pain less and less. He is still more emotional than he was before surgery, but we are hoping that will return to normal soon as well.
Thursday, January 26, 2012
Post-op
Tomorrow is Tyler's post-op appointment at Seattle Children's Hospital. It was originally going to be January 19th, last Thursday, but we rescheduled because of the winter storms going through Seattle. I think Dr. White will be very happy with Tyler's recovery. He has done so well! I am anticipating a fast appointment, but I have questions about what restrictions Tyler might have going forward. Dr. Song was always very reluctant to give Tyler any restrictions and only said that football and wrestling were off limits. It makes me nervous to not have a more specific set of guidelines, so I hope I get those tomorrow. I also want to know more about the upcoming surgeries. Now that he has a VEPTR, I want to have a general outline of the surgery we will be doing this summer.
As for getting back to life, I went back to work early because Tyler was moving around so much like he did before the surgery. He went back to school on Tuesday and had a great day. Tyler brought his x-ray of the VEPTR to show his classmates, and they apparently thought it was pretty cool! Everyone was excited to have him back to school.
Last week winter finally arrived in East Wenatchee and last Thursday night Tyler and Kaitlyn helped us shovel the driveway. Tyler is really pretty much back to normal and it is such a blessing. I mean, I just didn't know what to expect. I read stories and searched websites for anything that would give me an idea of how he would recover, and what he has done has surpassed our expectations. I really was excited to bring Tyler in for his post-op last Thursday because I wanted the doctors to see how well he had recovered in such a short period of time! He has returned to his feisty, active self and has not even needed more than a dose of Tylenol or Ibuprofen once a day. He has even had a few days that he has not needed any medicine at all! Yesterday school was cancelled because freezing rain coated the streets. Fortunately, the day turned into a beautiful and sunny day and the kids and I spent the afternoon building a snow fort in the backyard. Actually, I built most of it while Tyler supervised and Kaitlyn buried her dinosaur in the snow. We had a great time and I felt like we had really returned to normal. I know we won't always have that feeling and we will have to adjust our "normal" to include surgery every 6 months, but if this experience is is any indication of what is to come I think Tyler will fly through those recoveries as well.
As for getting back to life, I went back to work early because Tyler was moving around so much like he did before the surgery. He went back to school on Tuesday and had a great day. Tyler brought his x-ray of the VEPTR to show his classmates, and they apparently thought it was pretty cool! Everyone was excited to have him back to school.
Last week winter finally arrived in East Wenatchee and last Thursday night Tyler and Kaitlyn helped us shovel the driveway. Tyler is really pretty much back to normal and it is such a blessing. I mean, I just didn't know what to expect. I read stories and searched websites for anything that would give me an idea of how he would recover, and what he has done has surpassed our expectations. I really was excited to bring Tyler in for his post-op last Thursday because I wanted the doctors to see how well he had recovered in such a short period of time! He has returned to his feisty, active self and has not even needed more than a dose of Tylenol or Ibuprofen once a day. He has even had a few days that he has not needed any medicine at all! Yesterday school was cancelled because freezing rain coated the streets. Fortunately, the day turned into a beautiful and sunny day and the kids and I spent the afternoon building a snow fort in the backyard. Actually, I built most of it while Tyler supervised and Kaitlyn buried her dinosaur in the snow. We had a great time and I felt like we had really returned to normal. I know we won't always have that feeling and we will have to adjust our "normal" to include surgery every 6 months, but if this experience is is any indication of what is to come I think Tyler will fly through those recoveries as well.
Wednesday, January 18, 2012
95%
Today marks the 2 week mark since Tyler's VEPTR implant. Although it was a difficult time for Tyler and our family I know it was the best option for him. One of the things that bothered me the most about the surgery was that it is not just ONE surgery. Once you get the VEPTR, you are basically signing on for surgery every 6 months until it is decided that it is time for a permanent spinal fusion. I know every child is different, and that point is reached at different ages, but that is a LOT of surgeries! With that being said, I am so happy that he already has been visibly straightened by the VEPTR. Tyler is also exceeding our expectations and flying through his recovery. The transition from Oxycodone to Tylenol and Ibuprofen went smoothly over the weekend, and he only needs medicine a few times during the day now. Joey and I felt good about his recovery, attitude and activity level, so I went back to work yesterday.
Tyler has not returned to school, but is spending his days at Nana's house with his cousins. He is loving it. I asked him if he was ready to go to Nana's house or if he needed me to stay home with him on Monday. He immediately opted for Nana's house. Apparently he was tired of hanging out at home! So, things have returned to almost normal. I would say we are at around 95% of where we were before Tyler's surgery. The remaining 5% is just the fact that he doesn't run as fast as he used to or jump as much (at least not yet), I am still giving him medicine for pain occasionally, and he is more emotional than before. I know this will all come in time, and I think the last hurdle for Tyler is going to be an emotional one.
Tyler has always been a pretty confident kid. Despite his confidence, he has always been a bit reluctant to do simple tasks simply because he doesn't want to put in the effort to do it himself. This morning he had a mini-fit over putting on his snow boots! Tyler totally knows how to put them on all by himself, but would prefer for me to do it for him. But he can dismantle the garden fence in quick time if allowed! This passive behavior was something we were working on before the surgery, but I think we have had a relapse. I know it is because he is emotional, which I understand, I am too, and I think his confidence has been shaken a little. It is also because in the week leading up to the surgery to present, Joey and I have been trying to make things as easy for him as possible and giving him as much choice as possible. Now, I'm not saying that is a bad thing, or that I would do it differently, it just means that we get to reteach some routines. We were told that surgery and especially multiple surgeries can have a significant emotional impact on children, and I think are just at the beginning. I know we will get there, and we will settle into a new routine of normal with a VEPTR.
Tyler has not returned to school, but is spending his days at Nana's house with his cousins. He is loving it. I asked him if he was ready to go to Nana's house or if he needed me to stay home with him on Monday. He immediately opted for Nana's house. Apparently he was tired of hanging out at home! So, things have returned to almost normal. I would say we are at around 95% of where we were before Tyler's surgery. The remaining 5% is just the fact that he doesn't run as fast as he used to or jump as much (at least not yet), I am still giving him medicine for pain occasionally, and he is more emotional than before. I know this will all come in time, and I think the last hurdle for Tyler is going to be an emotional one.
Tyler has always been a pretty confident kid. Despite his confidence, he has always been a bit reluctant to do simple tasks simply because he doesn't want to put in the effort to do it himself. This morning he had a mini-fit over putting on his snow boots! Tyler totally knows how to put them on all by himself, but would prefer for me to do it for him. But he can dismantle the garden fence in quick time if allowed! This passive behavior was something we were working on before the surgery, but I think we have had a relapse. I know it is because he is emotional, which I understand, I am too, and I think his confidence has been shaken a little. It is also because in the week leading up to the surgery to present, Joey and I have been trying to make things as easy for him as possible and giving him as much choice as possible. Now, I'm not saying that is a bad thing, or that I would do it differently, it just means that we get to reteach some routines. We were told that surgery and especially multiple surgeries can have a significant emotional impact on children, and I think are just at the beginning. I know we will get there, and we will settle into a new routine of normal with a VEPTR.
Friday, January 13, 2012
Progress!
The last 2 days have been great for Tyler. He is able to play and walk on his own. He can walk up and down the stairs holding the rail for support and he can get up off the ground without help most of the time. It is amazing the progress he has made, and I am reminded of one large contributor to this progress at medicine time. I have kept Tyler on a pretty strict schedule of Tylenol, Oxycodone, and Ibuprofen. The Tylenol and Oxy are taken at the same time because they work best together, and the Ibuprofen at least 30 minutes before or after.
When we were discharged from the hospital Tyler was taking the Tylenol & Oxy every 4 hours. The doctors told us when he was at one week post-op we could stretch the time between doses to 6 hours, then 8 hours. On Tuesday he was doing well, so I stretched the time to 6 hours and he was fine. His activity did not seem to slow down and he was not in pain. (At least he did not admit to any except for when it was time for another dose, he doesn't want anything to slow him down and get in the way of his play time!) I was busy keeping him entertained, safe and on schedule with his medicine. Tuesday and Wednesday passed with progress and without major pain, so I thought I could stretch the medicine time again to every 8 hours on Thursday.
I was wrong.
Tyler played and his pain was gone for the first 6 hours, but once we got to 6 hours & 30 minutes, he was lying on the couch and wanted nothing more than to stay there. That was a big reality check for me. I have been amazed at his progress and I guess I had been attributing most of it to the fact that he is an active and healthy kid who is just healing quickly. I had not been giving the medication the credit it deserved for the role it is playing in his recovery. I am sure that Tyler's personality and active nature DO have a lot to do with his recovery, but I also understand that he would not be feeling good enough to be himself without the regular doses of medicine. Later in the day on Thursday, as I was 2 hours into building a 3 story Lego house for him, he asked for pillows and a blanket and lay down on the floor next to me. Kaitlyn was napping on the couch, and although we had just passed the 6 hour medicine deadline, he insisted he was not in pain. He also insisted that I keep building. So that is just what I did, and I thought Tyler was just sleepy and wanted to nap, but 45 minutes later he was still awake. He was just lying quietly and would occasionally ask me if I was done yet. I assured him that I would keep working on it and he could just take his nap, and to my surprise he answered that he wasn't sleepy. His back just hurt and it only felt better when he was lying down.
I felt horrible! Here he was lying there hurting and had just not wanted to admit it! Needless to say he got his dose immediately and quickly became more active again.
After what happened yesterday I was hesitant to try the 8 hour medicine time schedule again. But I decided to give it a try and just watch him very closely for the signs he gave yesterday of pain. What a difference a day can make! We had success! He really is a vibrant boy and his desire to get back to life as he lived it before having the VEPTR implant is strong.
Tomorrow will be the biggest challenge. We are at the end of the bottle of Oxycodone with no refills. I will hopefully give his last dose tonight and then we will hopefully be able to manage his pain with Tylenol and Ibuprofen alone. I know I can his doctor and get more if I need to, but the plan is to get him off of this strong painkiller as soon as possible. I am praying that he will make this transition easily! I certainly do not want him to have to lay on the couch because it is the only comfortable position. I guess we will see...cross your fingers!
| Tyler with his big balloons from the hospital. |
| Tyler flying his 747 Air Force One that Papa gave him in the hospital. |
I was wrong.
Tyler played and his pain was gone for the first 6 hours, but once we got to 6 hours & 30 minutes, he was lying on the couch and wanted nothing more than to stay there. That was a big reality check for me. I have been amazed at his progress and I guess I had been attributing most of it to the fact that he is an active and healthy kid who is just healing quickly. I had not been giving the medication the credit it deserved for the role it is playing in his recovery. I am sure that Tyler's personality and active nature DO have a lot to do with his recovery, but I also understand that he would not be feeling good enough to be himself without the regular doses of medicine. Later in the day on Thursday, as I was 2 hours into building a 3 story Lego house for him, he asked for pillows and a blanket and lay down on the floor next to me. Kaitlyn was napping on the couch, and although we had just passed the 6 hour medicine deadline, he insisted he was not in pain. He also insisted that I keep building. So that is just what I did, and I thought Tyler was just sleepy and wanted to nap, but 45 minutes later he was still awake. He was just lying quietly and would occasionally ask me if I was done yet. I assured him that I would keep working on it and he could just take his nap, and to my surprise he answered that he wasn't sleepy. His back just hurt and it only felt better when he was lying down.
I felt horrible! Here he was lying there hurting and had just not wanted to admit it! Needless to say he got his dose immediately and quickly became more active again.
After what happened yesterday I was hesitant to try the 8 hour medicine time schedule again. But I decided to give it a try and just watch him very closely for the signs he gave yesterday of pain. What a difference a day can make! We had success! He really is a vibrant boy and his desire to get back to life as he lived it before having the VEPTR implant is strong.
Tomorrow will be the biggest challenge. We are at the end of the bottle of Oxycodone with no refills. I will hopefully give his last dose tonight and then we will hopefully be able to manage his pain with Tylenol and Ibuprofen alone. I know I can his doctor and get more if I need to, but the plan is to get him off of this strong painkiller as soon as possible. I am praying that he will make this transition easily! I certainly do not want him to have to lay on the couch because it is the only comfortable position. I guess we will see...cross your fingers!
Wednesday, January 11, 2012
After pictures
Tyler had another great day yesterday. The stretching of the medication did get to him this evening and he didn't quite make it to the 6 hour mark. However, he did continue to improve. I am astounded watching him move around. It is crazy that this is the same little body I saw lying in the hospital bed, barely conscious and just out of surgery less than a week ago. Tyler is just bouncing back so quickly! But we know he still has significant pain when the medication wears off, and that is a good reality check. He may be able to move well, and is healing quickly, but he still is recovering from a major surgery and that is something that will take time.
Tyler is having a great time playing with Kaitlyn, but I need to remind both of them to be careful. Tyler is good about knowing his limits, or at least recognizing once he has reached a limit. I was scared, then laughed yesterday when they were playing and I heard Tyler call for help. I discovered him lying on the floor on his back. He was stuck! He has gotten pretty good at getting down and back up off the ground by holding onto something, but there are some positions he just can't get out of without help!
I took some "after" pictures today and he really looks great!
Tyler is having a great time playing with Kaitlyn, but I need to remind both of them to be careful. Tyler is good about knowing his limits, or at least recognizing once he has reached a limit. I was scared, then laughed yesterday when they were playing and I heard Tyler call for help. I discovered him lying on the floor on his back. He was stuck! He has gotten pretty good at getting down and back up off the ground by holding onto something, but there are some positions he just can't get out of without help!
I took some "after" pictures today and he really looks great!
Tuesday, January 10, 2012
Testing the limits
Yesterday Tyler was up to playing with all his trains and Legos. In fact, he can now get out of bed by himself and get himself down to the floor and back up by balancing on furniture. I am so happy that he is is recovering so quickly, but now that he has lost the fear he is much less careful with his body. It freaks me out that he will fall or hurt himself!
We also decided that Tyler was doing so well that we could start spacing the doses of Oxycodone and Tylenol out to every 6 hours today (we had been on a strict 4 hour regimen). So far so good! I hope that his pain will still be managed and he will still be active. The doctors directed us to begin spacing out the doses when he was feeling better so we can slowly get him off the Oxy by next week. The plan is that once he is off the Oxy, his pain will be well managed by Tylenol and Ibuprofen.
Thank you for all of the prayers, calls, visits, texts and positive thoughts sent our way. It looks like Tyler is really healing quickly and that is truly a blessing!
We also decided that Tyler was doing so well that we could start spacing the doses of Oxycodone and Tylenol out to every 6 hours today (we had been on a strict 4 hour regimen). So far so good! I hope that his pain will still be managed and he will still be active. The doctors directed us to begin spacing out the doses when he was feeling better so we can slowly get him off the Oxy by next week. The plan is that once he is off the Oxy, his pain will be well managed by Tylenol and Ibuprofen.
Thank you for all of the prayers, calls, visits, texts and positive thoughts sent our way. It looks like Tyler is really healing quickly and that is truly a blessing!
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