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!

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!

A big day

Sorry for not posting the pictures of Tyler's journey home this morning!  Here they are now.

So today was a big day in the Burnell house!  Tyler had an awesome night sleep and woke up in a pretty good mood.  He was still scared to do too much moving and just wanted to sit propped up on the couch for most of the morning.  He did perk up a bit when Uncle Jim brough Kaitlyn home from her sleepover with Sydney, but he still did not budge from the couch unless we made him start moving. It was so nice to have everyone home again!  Kaitlyn missed us and spent a lot of time saying "I want to hold you!" and I held her as much as I could.

Tyler's fears of moving all changed after we insisted on putting him in the shower.  He was not happy about showering, but I know I always feel better after a shower and I was hoping it would work for him too.  He also had not been allowed to bathe since his surgery, and after getting carsick on the way home last night he really needed a shower!  Later, Aunt Kristin and Brian visited and Tyler started moving.  He started slowyl but by the time Nana and Papa showed up he was walking on his own!  He still holds his back as he walks, and is off balance but he is making huge improvements today!  He even walked up and down the stairs with Joey and can sit on the floor and get up without much help from us or furnature support.

He was trying to be his old self and acutally was pretty successful!  After a busy day Tyler strarted winding down around 4pm, and after watching the Polar Express he was ready for bed.  He put himself to bed at 7:00 and fell asleep pretty quickly.  He had been taking at least 2 naps in the hospital and he just wore himself out today.  Once he figured out that he could move around he just wanted to play.  It was like he wanted to make up for the time he spent lying in bed afraid to move because his back hurt.  He is really a trooper and we are so happy to have him home.

Home at last!

I am so happy to announce that we are home tonight!  We were discharged around 5pm and then began the 3 hour drive home.  It started out alright, but ended up being pretty rough and painful for Tyler.  However, once we got home, cleaned up and settled in he perked up and even announced that he wanted to walk around by himself.  He then had Joey help him off the couch and shuffled around the coffee table!  He is so happy to be home.  We can see how relaxed he is already and I know it won't be too long before he is making it around on his own. 

We came home to some pretty special decorations put up by Nana and Aunt Kristin.  It made Tyler, Joey and I smile!   It is good to be home!  Here are some pictures of the discharge and trip home!

Sorry, it is taking too long and I need to sleep. I will post the pictures in the morning!

A good night

Tyler had a great night last night.  To top off his day he decided that he wanted to walk before bed.  He walked around the room and even to the doorway to fly his airplane that Papa brought for him before he needed to get back into bed.  He slept through the night because he was able to get off of the IV medications and catheter yesterday and onto oral medications.  His nurse was FANTASTIC and didn't wake him or me when she snuck in at midnight to check vitals and give a dose of Tylenol and Oxycodine.  She was even able to remove the IV start in his hand (he had been afraid to take out before bed) while he was sleeping. 

This morning Tyler has still been making progress, though slow and painful at times.  He took another ride to the playroom in the wheelchair to play with the train table, but we had to coax and bribe him to get that far.  He is uncomfortable and scared to do anything that will make his back hurt, so he really just wanted to get back to bed which he told us every couple of minutes.  Traci and baby Davis came to visit and we expect to see a few more visitors this afternoon.  Right now he is tired from his adventures and the latest dose of medication so he is napping. 

We also just had the chance to talk to Dr. White (our new orthopedic surgeon since Dr. Song is leaving for LA Shriner's)  He said Tyler was doing great and will be able to go home soon.  In fact, we technically meet the criteria for discharge now, so when we feel ready we can go.  It is great and scary news at the same time.  We want to go home, but leaving the care of the hospital is kind of scary.  It reminds us of when we got to take Tyler home from the hospital when he was a newborn. 

We will go home either tonight or tomorrow and get started with the recovery at home. 

baby steps

Tyler took his first steps today!  One of the milestones we need to hit before going home is for Tyler to be walking.  Today we put him in a wheelchair, despite his protests, and took him down to the playroom.  The Physical Therapist came with us and we were hoping that the train table down there would be enough incentive to get him to take his first steps.  BRILLIANT IDEA!  Tyler loves trains and lit up a little at the sight of the train table.  He had begged us the entire chair ride down to the playroom to just turn around and let him lay down again, but once he saw the table he was motivated to get close to it.  Joey and I supported him as he shuffled the foot or so over to the train table and picked up a car.  He whimpered and moaned the whole time as he took baby steps to the train table and then shuffled right back to the wheelchair.  My dad took a few pictures of the steps and you can see that his back is considerably straighter!

The entire adventure did not last long, he really just wanted to get back to his bed.  It was scary and painful for him to walk, but the PT assured us that the first time is the worst and it will just get better from here.  We did get him to walk a little bit more later this afternoon when we went down for more x-rays, and that was just as hard.  Tyler was extremely tired at that point and just wanted to take a nap, so the idea of exerting energy to try walking again was not appealing in the least to him. Now he is taking a nap and we are hoping he will be up for one more little walk tonight before bed.  He is making good progress, and it looks like we will be able to go home on Sunday.

Tyler's welcome and cheerful burst of enrgy this morning wore off after 10 am.  He spent the rest of the day in a kind of daze.  We were visited by another Child Life Specialist named Jenna today and she went on a hunt for trains and came back with toys, coloring pages, DVDs, and a puzzle to keep Tyler entertained and distracted from the discomforts of being here.  I am just so thankful for the amazing staff and volunteers here who make this experience as pleasant as possible for families.  Tyler was also anxious to get up out of bed and when the Physical Therapist came at 10:30 he stood (sort of) very briefly.  It was hard for him and he immediately wanted to lay down again.  I am happy to report that we tried again in the afternoon and he did stand for a little bit longer with less support.

We had My sister Vanessa and her family come to visit, and Nana and Papa brought Kaitlyn to visit as well.  Tyler did offer some smiles and a little small talk, but was just out of it for most of the visiting time.  Kaitlyn played with him and the trains for a while and he perked up to get to play with his sister again.  It is cute how much they miss each other. 

Nana, Papa and Kaitlyn visiting Tyler

Cousins Brooklyn and Sydney and sister Kaitlyn visit Tyler

He finally took another nap at 5pm which I hope will lead into a good, quiet, restful night for him (and us).  Sleeping in the room is a blessing because we can be with Tyler at all times, however, it is not a very restful place.  The wonderful nurses are quiet as they come to check on him, but they have to do their job.  Tonight the checks and medication should be spread out a little more so hopefully we get more sleep. 

Dr. Song checked in after 4 pm and said that on Saturday we should notice some big improvements, and we are looking forward to that.  For now, he is progressing just fine and is feeling OK.  His pain is well managed and he is beginning to do a couple of the things he needs to in order to go home, and we are happy for those blessings.

The first night

The first night did not begin great.  Tyler was still groggy and drifted in and out of sleep for the evening.  He got sick as a side effect of several of the medications and the anaesthesia.  It took a while to get his pain managed well enough to change him, but once that was done he slept.  He was upset and didn't want to stay at the hospital, but then Tyler actually had a pretty good night after he got the anti-nausea and muscle relaxant.  He woke up several times throughout the night as the nurse checked his vitals and gave more medication, but he improved.  At about 4 in the morning he asked his nurse for a smoothie, and when he woke up he said that he actually liked being here.  It must be the great care of his nurses that made him say that!

Tyler's nurses have been wonderful and he really likes them.  When she came in this morning at 6 to check vitals he asked her "Did you have a good night?"  He was still asking for a smoothie so she said he will try out a normal diet today and see how he does.  He is social and smiling, but not quite his active old self yet.  We will get another x-ray right now and he will get up with the help of the physical therapist.

OK, x-ray done.  It was painful to move and Tyler had a little bit of a hard time with it.  But Joey is reading to him now and a vanilla pudding waits for him when the story is over.  It looks like he is making some good progress toward getting up today. 

Thank you all again for the prayers and support!

rest

Tyler is resting in his room and it looks like his pain is managed now.  He was groggy and complaining of pain when he came into the room just after 1:00, but was given a higher dose of Morphine around 2:30 and is now watching the Polar Express quite comfortably.  He even managed a smile for the camera!  He will be sleepy for the rest of the day and will hopefully be able to sit up tomorrow.



 During the surgery Joey and I walked up to the Family Center which is a quiet place for families to sit and relax and take care of their immediate needs.  It has computers, magazines, coffee, tea, restrooms with showers, lockers, even laundry and sleeping rooms.  This hospital is truly a blessing for kids and families. Anyway, on the way there Joey pointed out the construction on the new part of the hospital.  The steel workers on the project have written messages to the kids who could see them out the window.  It was so sweet.  If you look colsely, you can see the messages.

I mentioned previously the Child Life Specialist who helped keep Tyler calm before surgery, but I need to relay how wonderful she was.  I think her name is Nancy (forgive my memory on the name, I was focused on Tyler) and she met with us in the patient room.  She asked Tyler about how he was feeling and then began the distraction.  He told her that he loved trains, so she set out in search of some to help him cope through play.  She was gone a little bit, then came back apologizing for taking so long and said that she was sorry, but she could only find one little Thomas the Tank engine.  Tyler's eyes lit up and he said "I love Thomas!"  He hopped down and immediately began sending the train on adventures across the room.  Nancy then asked if he would like to race his train with some thing, and she went in search of another vehicle to race.  Tyler was ecstatic and sent the train and ambulance across the floor, crashing into the wall which sent Tyler into fits of giggles.  Nancy then helped communicate with the anaesthesia team about Tyler's fears and also talked to the nursing staff about possible fears or things he would have a problem with when he got to his room.  She was great and helped us through that tough time.

later
  
Now it is 4:45 and Tyler is sleeping.  Tyler became upset a while ago because he was having a problem with his catheter.  I don't know why, but it didn't occur to me that he would get one, so I didn't explain it to him.  I think it is OK now because he is resting.

He is out!

Tyler is out of surgery!  We just met with Dr. Song and he said Tyler did great.  He only needed one rod and they achieved good correction.  Dr. Song even expanded it one notch to stretch him a little.  His curve looks much better and Dr. Song measured it at around 51 degrees.  The measurements can vary greatly depending on who measures and where the mesurement is taken, which explains the variation in this measurement and others.  But when measured side by side you can see the difference the VEPTR makes.  The x-rays are his before and after where you can see the difference and the VEPTR rod in place. 

Tyler is in the recovery area and they will call us in a little bit to let us know where his room is and when we can see him.  Thank you again for the prayers!  Now we will pray for a quick recovery.

Surgery has started

Tyler went in this morning and was not really happy about being here.  However, the Child Life Specialist met us in the pre-op room and helped distract Tyler.  It worked pretty well, he was running around racing Thomas the train on the floor.  He spit out the anti-anxiety medicine, so I went back to the OR with him.  He was surprisingly calm and went to sleep pretty quickly, but not before questioning the nurse about the lights and some of the equipment.  Typical Tyler curiosity.  He did not put up a fight over the mask and he was asleep within a minute.  I then had to leave him in the room with his team and let them do their work.  God is watching over him. 

They had about an hours worth of prep work like hooking him up to the spinal monitors and stuff, then called to say they had begun at 9:46am.  We should get our update any time now.

Thank you all for your thoughts and especially prayers.

The night before surgery

It is the night before surgery and Tyler is now sleeping.  We drove over to Seattle this afternoon and had to stop at Children's to get Tyler's bloodwork done.  That was not easy.  It took 2 nurses and Joey & I to get it done.  At least it was quick and the pain was minimal.  I was able to get a hold of a Child Life Specialst and she left a package of stuff for Tyler to look at that will hopefully help him understand what is going on tomorrow.  We were able to get a room at the Ronald McDonald House right next to the Hospital.  It is such a great resource for families who have to be here away from home for long periods of time, and it is certianly a fun place for kids.  There was even a gift for Tyler waiting in the room for him.  He thought that was really great and I am touched by the generosity of this place.  They really try hard to make this experience as easy as possible for families.

We had to give Tyler a bath tonight and wash him with a special soap called Hipiclens to help lessen the chance of infection.  Then we used the kit from the Child Life Specialist and played doctor.  Tyler seemed to be comfortable seeing and using the medical stuff.  I guess we will see tomorrow how it really worked.  Before bed I took some "before" pictures.  I am anxious to see how he will feel and look "after".

 

This is Tyler's traction x-ray from August 2011

We are checking in tomorrow at 7:15 and the surgery is scheduled to begin at 8:30 am.  We hope the anesthisiologist will give Tyler an anti-anxiety medication before he goes back.  We have heard that it works really well for kids, especially those who have fears. I'm sure every kid who comes in for surgery is scared and could use some! 

Thank you to all who have given support, prayers, hugs, advice and time.  We appreciate everyone so much.  I will try to post again tomorrow during the surgery with updates.  Maybe it will give me something to do other than worry about Tyler.

Denial is a river in Egypt

I am and have been living in denial about Tyler's upcoming surgery.  Joey has been too, and I think Tyler is as well.  The word has always held negative connotations to me, but in this case it is what we need to do to not freak out every day.  It is an odd feeling.  I know and can talk about Tyler's surgery and explain the details of his medical history, but I feel detached from what is really happening.  Daily tasks take over and keep us busy and since Tyler is so healthy and active it is easy to ignore the curve in his spine.  We can see it and feel it, but just choose not to dwell on it.  But I can feel it changing now.  It is harder to concentrate on tasks, particularly this evening. 

We have tried to be as open and honest about the surgery as we can with Tyler without scaring him too much.  Although he doesn't like what he hears, he has taken the information in pretty well.  He has been talking calmly and openly about his surgery and even has been asking who will visit. Tonight we told him again about what will happen when we get to the hospital and tried to explain some of the things we have heard about that might be scary if he doesn't have warning.  (Thank you for the tips from those who have surgery experience!)  He just broke down and cried.  He begged us to not take him to Seattle.  He is scared and confused and just plain doesn't want to have the surgery.  He is a brave kid and tried to pull himself together which just broke our hearts even more.  It is so hard to not just break down and cry with him because we are scared too, and we don't want to put him through this either.  I did hear about Child Life Specialists at Children's who are supposed to be great at helping kids understand what is going on and cope with all stages of being at the hospital.  I will call to arrange for one to be with Tyler and hopefully that will make things easier for him.

The reality of the situation is sneaking in on me now as I make the final preparations like packing the bags and making arrangements for Kaitlyn (our 3 year old daughter) and coordinating family coming over to visit.  It is going to be harder to ignore and live in denial much longer.