Cast #3 is done!

Cade got cast #3 taken off on Thursday.  He tolerated 9 weeks in that cast just as well as he did 6 weeks in the first two.  There was one difference.......this one worked!  Cade's curve is down to 20 degrees!   It was previously measured around 37-42 degrees.  This was fantastic news and doctor says we will continue with casting as long as he is responding and his curve is decreasing.  The goal would be to get him under 10 degrees before moving to a brace.  Cade is enjoying a break right now until Wednesday 11/4.  We have been to the indoor pool and the boys enjoyed a special spooky glow in the dark bath Friday night.  Thank you for your prayers!

Cast #2 Removal and Cast #3

Cade got cast #2 off on 8/20.  He enjoyed swimming at Uncle Charlie and Aunt Cheri's house in OK that weekend as well as time spent at the indoor pool and new splash pad near our house throughout the week.  He did the EOS X-ray machine which delivers 7 times less radiation than a normal X-ray.  However,  it takes longer and requires him to hold still longer so it took 2 tries.  Doctor still wasn't sure if it was an accurate scan because he looks like he is leaning in it.  So, it showed no change in the curve.
After a week long break, he got cast #3 on 8/28.  We arrived at 6am and were home by 11:30.  We opted out of the calm-down meds this time (Versed) and he did great!  A wagon ride and I-pad on the way to the OR worked like magic.  He came back to us much calmer as well.  He'll be in this cast about 9 seeks until 10/29 and then enjoy another cast break over Halloween.  Cast #4 is scheduled for 11/4.  His current cast is blue with Superman tape just like the first one.  We couldn't talk him into red for the Chiefs so maybe it will be another Blue October!

Playing with toys after cast removal

After cast #3, happy camper

Cast Break and Round 2

Cade enjoyed a 6 day cast break that was perfectly timed over the July 4th weekend.  We went to a party Thursday night to see a local firework display.  Friday we hit the KC zoo because the high for the day was 80.  We went to another party that night.  Saturday we made it to the neighborhood pool and enjoyed our first round of pool time together (I snuck Rylan out for some pool time one afternoon while Cade napped, but 1st time for Cade).  Sunday and Monday we hit the neighborhood pool again.  Tuesday we improvised with one last swim at the indoor pool at the gym due to rain.   It felt like a mini vacation this weekend!
Cade had a later start time this morning for cast #2 and we didn't have to be at the hospital until 8.  He did great waiting and was entertained with all of the toys-he even got to play on an I-pad while waiting to go to the OR.  We did everything the same as last time including opting for calm down meds before separating from us (Versed) and anti-nausea meds.  The Versed makes him more confused as to why we are not going with him instead of screaming and crying when we separate.  After about 30 minutes in the waiting room the receptionist called us and told us to go in a conference room and answer the phone when it rang.  Eric remains calm at times like this and I automatically panic and wonder why they are calling us this early.  Turns out they didn't have the fiberglass color he requested and we had to give a 2nd choice.  Ahhhh, relief!  Probably 30 minutes after that I get a call on my cell from the hospital saying something about delivering a reclining wheel chair for Cade.  I am completely confused and ask why he would need a wheel chair since we had not discussed this.  The woman on the other end just says "oh, I'll wait until the doctor talks to you then".  I then panic again thinking they saw a fracture on his X-Ray or that he somehow was hurt during the procedure.  I asked the receptionist if I could get an update on Cade due to the phone call but she thought it was just a wheel chair to get him to the car.  Luckily his doctor came in a little bit after that and told us everything went great.  He was more aggressive with the cast and got more in-cast correction this time.  He didn't give a number but showed us the X-Ray and his spine looks pretty straight in the cast!  I told him about the phone call and he thinks they got Cade mixed up with another patient he has (same 1st name) that has a femur fracture and needs a wheel chair.  Cade was more agitated this time when we met back up with him in recovery.  This apparently is a side affect of the Versed.  Calm before surgery but very agitated and hard to please after, so I don't know if we'll opt for it next time.  After staying for observation for a while we got discharged.  He was doing better on the ride home and much better after a late lunch.  I got him down for a nap and he's been great the rest of the night.  He has a black cast now to go with the batman tape we picked for this cast.  He'll stay in this cast 6 weeks again.  His doctor actually put the same type of cast on another kid right before Cade this morning.  They currently have 4 kids undergoing this type of casting in their practice (he has Cade and the other kid and another surgeon has two kids).  I've been curious how many kids at a time they see with this since you don't read about Children's Mercy KC when researching Mehta casting.  There are other hospitals that have doctors that really specialize in this and primarily work with casting so people travel out of state sometimes for this treatment.  We're very lucky to have a facility in our city with trained doctors and the necessary equipment.  Here are some cast pics and his in-cast X-Ray:

 

July 2nd: Cast #1 done!

Cade had cast #1 removed today.  He made it the full 6 weeks with very little complaints.  We are very proud of him.  We arrived at the hospital at 10 this morning and they removed his cast first.  He was a little scared of the noisy cast saw but did great.  His nurse was awesome.  She used the saw to cut through the fiberglass layer on the outside but then used cast scissors to cut through the 2nd layer which was plaster so that it wasn't as loud and scary.  Other than some grimy dirt, his skin looked really good after removal-yay!  He was very itchy and it took him a few minutes to adjust to it off.  I'm sure it feels weird to go from having something stabilizing your back that weighs 2-3 lbs to suddenly not having it.  We then had an X-ray to check progress and tried the EOS machine which emits a lower dose of radiation than a typical X-ray machine.  The tech was a little reluctant to put Cade in it because it takes a little longer than a regular X-ray and he has to hold still.  It took 2 tries but we got it!  We then met with his doctor.  There was a little bit of correction with this cast which is great!  He originally measured Cade's curve at 42 degrees in March.  In cast he got him to 15 degrees, and now out of cast he is at 37.5 degrees so we are looking at a 4 degree improvement.  One of the sayings I've heard regarding this process is to look at it as a marathon, not a sprint.   It will likely be a long process but very worth it if we avoid or at least delay surgery.  We are looking forward to swimming, baths/showers, and cuddles for the next 6 days.  He will get his 2nd cast on 7/8.  Thank you for the prayers and please continue to pray that this process goes well for him.

 

 X-rays in order: starting 3/17/15 at 42, in cast 5/19/15 at 15 degrees, and out of cast 7/2/15 at 37.5 degrees.

X-Rays

We are more than half way through this first cast and Cade is still doing great!  We've only had a few hot, sunny days where we miss swimming thanks to all the rain we've been getting.  Potty training is still going well.  He's pretty much there unless he is having too much fun when playing.  He has tolerated car trips pretty well until this past weekend.  We went to Owensville for a wedding and once we hit the half way point, he had to stop and stretch his legs every 30 minutes due to the cast rubbing his hips.  This happened on the way home too so we'll make sure this isn't a problem in #2 since we will be traveling to Owensville, Colorado, and Oklahoma during that cast.
I received a copy of Cade's x-rays.   The 1st one is from 3/17/15 to confirm his diagnosis.  It is a standing X-ray.  Starting point- 42° curve to the left T6-L1, RVAD 10°, rib phase 2 (this is mostly for my info to remember).

2nd x-Ray done in OR.  In cast laying on traction table.  Got curve

to 15° in cast.

These are just photocopies so not the best quality, but you can get an idea of what his spine looks like.  He will get an out of cast X-ray on 7/2 to see if there is any correction or if the curve has managed to get any bigger despite the cast.  It was probably larger than 42° when he actually got his cast because the doctor thought it looked slightly bigger on the MRI and there was 2 months between the first Xray and his cast which is plenty of time for a curve to progress in size.  We are staying hopeful but realistic.  Most kids have 6 casts at a minimum so it is a process, but well worth it if it means avoiding future surgeries.  Thank you for your continued support and prayers!

Cast 1: One week down

Cade has made it one week in his cast and is doing Amazing!  He really hasn't let it slow him down.  He struggled a little with figuring out how to get comfortable the day he came home with it, but by the next day was getting up and down from the floor fine and is pretty much able to do everything he did before. He is sleeping fine in it and his appetite hasn't been restricted at all. Luckily the biggest challenge has been figuring out what clothes work.  Cade returned to preschool last Thursday.  Over the weekend, he enjoyed boy's night with Daddy and Rylan.  Saturday and Sunday we hung out at home and worked on potty training.  Monday, he went to a party at a neighbor's house and enjoyed a bounce house and playing with lots of kids.  He has only asked once or twice to take the cast off.  Daddy gave his cast some swag Monday night by adding Superman duct tape to hold down some of the mole skin that was peeling up from his clothes rubbing.  He's been getting sponge baths and enjoyed a good hair wash Monday night over the kitchen sink.  This week, he is going to preschool Tuesdays-Thursday and has worn underwear-yay!  The boys will stay home with me Friday and then we'll have our first long car ride in the cast as we travel to Owensville for the weekend.  Here's some pics of our little trooper from this week.

Cast #1 is on

We arrived at Children's Mercy a little before 6am today.  Cade did great.  He didn't ask about eating or drinking and enjoyed playing with all their toys.  He was cleared for the procedure and they started around 7:30.  He had a calming medicine before we had to leave him so he did not scream and cry (like the MRI).  They gave him a little gas to put him to sleep before putting in his IV. They finished around 9:15 and Cade's doctor talked to us.  The MRI was clear-no abnormalities of the bones or spinal cord which was a relief.  He did say Cade's curve probably progressed in the 2 months since his last x-ray because it looked larger on the MRI but he did not give a number.  It would be hard to compare numbers anyways since Cade was laying down for the MRI and the x-rays are done standing since that it more accurate.  The good news was that they got him to a 15° curve in the cast.  He tolerated everything well and we were able to see him by 9:45.  He was crying and asking for Daddy when we got back there but was better after sitting on Daddy's lap.  He did complain about the cast hurting and wanted to take it off.  The nurse reassured us that he was just a smart 2 year old who knew if he complained about it hurting we might remove it.  It is heavy and probably uncomfortable but we are supposed to give him time to get used to it.  We were out of there by 10am and headed home.  Once he got home and had all his toys he was much better.  He got anti-nausea meds so no throwing up this time:). We were really surprised at how quickly he has adapted already to his cast.  He is now very proud of it and had to show it off to Rylan, Lolly and Pop, and Nana and Papa.  He is figuring out how to get up off the floor and comfortable positions for sleeping and playing on the floor.  He's going to spend the day tomorrow with Lolly and Pop so he can get more comfortable moving around.  Thank you for the prayers.  We continue to pray that the cast
helps his spine grow straighter and decrease his curve.  He will get this cast off July 2nd and will get x-rays to see how he is responding.  Hopefully his curve will be lower than 42° out of cast.  He will get his 2nd cast on July 8th and it will be on 6-8 weeks.  Keep praying!

MRI-check

Cade had his MRI today at Children's Mercy South.  We started out good.  He slept till 7:15 and didn't ask for food until about 7:45.  We planned to leave around 8 so didn't have to withhold food and drinks too long.  Made really good time and arrived early to the hospital.  They got us in a little after 9.  The nurse told us they would start his IV after anesthesia cleared him.  We think they started the IV around 10:20 but was busy holding him so the nurse could get that in and didn't keep track of the time.  Putting the IV in was hard to watch.  He was very upset.  He calmed once they got some meds in there and then they wheeled him off.  It was hard to leave him especially since he started screaming and crying.  We waited in the waiting room for about 2hrs before they finally came to get us.  Cade apparently started to wake up before the MRI was finished so they had to give more meds.  He was awake but pretty out of it when we went back to see him.  The nurse had already given him goldfish crackers and apple juice and he was inhaling it.  I did not have a good feeling about how fast he was drinking and eating when he was still so woozy.  He couldn't sit up independently at that point but she told us we could go.  Sure enough he puked at the exit so we went back to the room.  She helped us clean him up and watched him for a few minutes and then sent us on our way. He was pretty irritable the whole way home.  At home, he wanted to walk but was too unsteady.  He fought us on changing clothes, where to lay, etc.  He then started throwing up again.  Once we got him calmed down and cleaned up he was pretty tired out so we made a bed on the living room floor where I could keep an eye on him.  I was worried that he would fall out of bed or off the couch and he seemed to prefer the floor.  He passed out from 2-5pm.  When he woke up he was almost back to normal.  He smiled and said "I sleep good!".  He still wasn't very steady on his feet so we had to stay close.  He ended up eating a snack and a great dinner and made it out for ice cream.  Eric and I agreed that it was like taking care of a drunk for a few hours there.  So glad when he was back to his usual self.  Hoping to hear results by Monday.  Cast is scheduled for Tuesday so keep the prayers coming!

new schedule

We were able to get Cade's cast rescheduled for 5/19.  He will have his MRI first on 5/13.  They assured me it was fine for him to do these as close together as they are.  He'll be in the first cast for 6 weeks and will have it removed on 7/2.  We'll enjoy a cast break over the 4th so lots of swimming hopefully!  He is scheduled for the 2nd cast on 7/8.  We originally thought they would cast over the shoulder but the doctor told us the other day that he is not doing it because he does not think it makes a difference and is more uncomfortable on the kids.  We had a nice trial run at the hospital the other morning so we know more about what to expect on 5/19.  Thank you for all the thoughts and prayers!

Well, we went for our pre-op appointment at 6am this morning and the anesthesiologist did not feel comfortable proceeding today due to a croupy cough so we are home.  The nurse will call to rescchedule.   May be 6 weeks.  Keep you posted.

Monday "meeting" with doctor

I mentioned in my last post that we would be speaking further with the doctor to get questions answered.  We were able to email his nurse a list of questions and I received an email that night with every question answered.  We are feeling better and have officially scheduled casting to begin on 4/14.  We have lots of people praying for Cade so keep the prayers coming!

Welcome to our new blog

3-20-15

Welcome to our Schlottach family blog!  We had a blog going when we were expecting Rylan and for the first year but got away from it as life got busy and we ran out of storage on our blog.  We're going yo try this a second time to keep you updated on life as we have been faced with some news this week.  This past week was spring break for me.  I was going to keep the boys home and enjoy a week of fun.  We also had Cade's 2 1/2 year well check up on 3/17.  He had a great check up and I got into a conversation with his doctor about a previous chest x-ray he had this year when they thought he had pneumonia.  The x-ray was negative for pneumonia but they did mention to Eric that Cade had scoliosis.  I didn't think this was a big deal at the time because he appears healthy, is developing well, and is meeting his milestones.  However, the pediatrician told me that it is very unusual for a child as young as Cade to have scoliosis and encouraged me to take him to get a spinal x-ray which we did that very day.  I also began researching scoliosis in young children.  His pediatrician called the next day and reported that he did have scoliosis with a moderate curve of 35° in T5-L2 and made a referral to an orthopedic doctor at Children's Mercy Hospital.  Needless to say, our hearts were broken and we were panicing for our little boy.  Cade and I met with Dr. Anderson at CMH on 3/19 at 9am.  He said the curve was about 42° (the orthopedic doctor does his own measurement on the x-ray)and Cade would require treatment as infantile scoliosis is usually progressive.  If left untreated, the spine continues to curve and compromise the lungs and heart which can be fatal.  Cade will have an MRI under sedation on 5/13 unless a spot opens sooner. This is to rule out any structural problems with his spinal cord that could be causing to curvature.  Most cases are idiopathic meaning there is no known cause.  It could be that the baby's spine is molded that way in utero and continues to curve as they grow.  He did have slight torticollis as an infant which is a turning or tilting of the head.  Dr. Anderson reported that hears that frequently in kids with infantile scoliolis.  Treatment options include serial casting or bracing.  We are leaning towards serial casting which involves Cade under going a non-invasive procedure where they manipulate his spine using a special traction table and then cast his torso so that his spine is as straight as they can get it.  He would again be under anesthesia.  He would wear this cast 24 hrs a day for 2-3 months (no bathing or swimming).  When the cast is removed he would have another x-ray to see if there is progress.  He can then be re-casted using the same method.  This would continue as long as progress was being mafe.  This could continue up to 2-3 years if he is responding well to treatment, or could be much shorter if he responds quickly to castiing.  If this treatment works, it could cure the curve and mean no future surgeries.  If it does not fix things it may at least maintain his current curve and allow time for his ribs to continue to grow and expand and his lungs and heart to grow.  He may then have surgery closer to puberty when his spine stops growing to fuse the vertebrae into a straighter position.
Bracing only works to maintain his current curve.  It would not likely decrease his curve.  This would mean surgery would be more likely.  The pros of this however are no anesthetic and the brace can be removed for bathing and exercise or swimming.  If we go the casting route, he would likely be in a brace once he plateaus on casting or is to a curve of 10° or less.  The brace would be worn to maintain that position until growth is complete.
This is all we know for now.  We plan to speak further with the doctor on Monday.  We just wanted to let everyone know what is going on right now and ask for the following prayers:
1.  Please pray that we can get the MRI done sooner and that it comes back clear.
2.  Pray that Cade responds well to treatment and will not need future surgery
3.  Pray that his body is resilient and can take the X-rays and anesthesia without side effects
4. Finally, please pray that we all can remain strong through this and stay positive and hopeful.

On a side note, we had lunch as a family today at Culvers.  I received a call from the nurse to try to answer some of my questions.  I took the call outside by myself and was in tears.  When I hung up, a woman from a table nearby approached me.  She told me she had overheard part of my conversation and knew I was in distress.  She had just come from a conference on healing and prayer and asked if she could pray for Cade.  She said a very nice prayer and gave me a hug.  She told me she had planned to grab a protein bar for lunch but her car headed to Culvers instead.  I think it was a sign:)

*Update: there is a spot open for Cade to start his first cast on 4/14.  We will discuss this with the doctor Monday 3/23 and make a decision.  He can have his MRI while casted.
Posted by: Jill