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.

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. 

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. 

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.

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.

We knew it would be a challenge to keep track of the time and what medications we were giving, so we put a whiteboard in the kitchen and write down the time and medication we give Tyler.  It is a lifesaver!

 Tyler with his big balloons from the hospital. 

Tyler flying his 747 Air Force One that Papa gave him in the hospital.

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!

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!