Caden’s Page

We took Caden to see the pediatric orthopedics clinic at MUSC this past week. We ended up having the discussion that we expected, about surgery. The x-rays taken on Monday showed that Caden’s scoliosis curve has progressed to 73 degrees up from 68 degrees in March. Passing the 70 degree mark was a mild stone that we were not looking forward to.  According to the orthopedic surgeon a child with a 70 degree scoliosis curve should have surgery to implant rods because the benefit of the rods become less effective on curves greater than 80 degrees and in many cases a severe curve will begin to take up space in the chest cavity that prevents the heart and lungs from developing and functioning correctly.  The photo on the right is from an x-ray taken of Caden when his curve was at about 54 degrees a little over two years ago.  This was taken from the front.  What the picture does not show is that the curve on the right side of his body is that the spine is also curing into his chest cavity.

There are two primary types of straightening devices for children with scoliosis.  One is a growing rod and the other is a VEPTR rod.  The growing rods are attached to the spine itself.  With Caden they are planning to use the VEPTR rods.  The top end of the rods are attached to the rib cage and the lower end of the rods are attached to the pelvis. Once the rods are inserted into Caden’s back he will have adjustment surgeries about every six months until he is 12-13 years old.  At that time they will remove the rods and fuse Caden’s spine to prevent the curve from reoccurring.

We do not have a surgery date for Caden but we are shooting for mid to late September.  We have a vacation in early September that will also be tied with a stop at the Cincinnati Children’s Hospital where Caden will see a multi-disciplinary team that specializes in feeding and swallowing.

This week Caden will see his cardiologist.  We do not expect any surprises there. Caden’s last open-heart surgery was nearly two years ago when they performed a Ross procedure.

in other news, I have battled some spells of illness over the past 12 to 18 months.  I have had nearly a dozen episodes of nausea and diarrhea that last about 24-36 hours.  No one else in the family gets sick and the illness does not seem to linked to food since nearly every time the whole family has eaten the same thing.  Our new family care doctor agrees with Sherry that this is not “a bug”.  I have been referred to a GI specialist and will be getting a wide variety of tests completed over the next two weeks.

Please keep Caden and the rest of our family in your prayers.

Caden has been referred to the Aerodigestive and Sleep Center at Cincinnati Children’s Hospital. Caden’s local ENT (Otolaryngology / Head and Neck Surgery) specialist has reached the end of his tool belt in terms of treating the swallowing challenges that Caden has battled since birth.  Caden will be six years old in just a few months and has never swallowed anything, not a single bite of food, drink of water, not even his own saliva.  We still feed Caden exclusively with a feeding tube five times per day including two 10 ounce boluses of water for hydration. The trip to Cincinnati Children’s will connect us with an interdisciplinary team that deals with feeding disorders and upper digestive tract problems among other things. We are blessed to get the appointment scheduled during a week when we were already going to be in the Cincinnati area. We will be tying this appointment into a vacation to Indiana.  We were already planning on stopping for a day and visiting the world famous Creation Museum just south of Cincinnati on our way home from Indiana so this appointment works well with our plans.

Caden will be visiting the orthopedic surgeon here at MUSC in a couple weeks.  This appointment will include the big discussion about surgery.  I wrote a post in late March titled Taking Inventory After MBS that included details about our last appointment with the orthopedics clinic:

The surgeon basically told us that the time has come to ready ourselves for surgery.  The surgeon sees the curves in Caden’s back   reaching a point where modern medicine calls for surgical intervention. There comes a point with most scoliosis cases where the spine can interfere with the growth and/or functionality of the lungs.  The surgeon believes that we are approaching that point with Caden and has recommended that rods be surgically implanted into Caden’s back within the next six months to begin to straighten the spine.

We are not looking forward to this appointment.  Surgical intervention for scoliosis is not something that we are looking forward to as it would put Caden on a regular hospitalization approximately once every six months to get the device adjusted as his spine grows.

We would greatly appreciate your prayers for Caden.  Sherry and I need prayer for discernment and wisdom as we enter into these next few weeks and months with Caden.  Please pray for us as we make decisions that affect Caden’s comfort and quality of life.

Caden may have aspirated this week during a choking incident.  Late morning Wednesday I was sitting at the kitchen table while Caden played on a  blanket in the family room with some Legos. Sherry was in the garage cutting JJ’s hair and Riley was in the play room.  All of a sudden Caden jumped up from his blanket in a panic and started coming in my direction.  Caden was obviously struggling to breathe.  He was getting a small amount of air in and out and I thought he was having a really bad retching spell.  My initial reaction was to pick him up and throw him over my shoulder and run upstairs where I knew the suction machine was located.  I lay Caden on the floor at the top of the stairs next to the suction machine.  I turned on the machine, opened Caden’s mouth and inserted the Yankauer (suction tube extension used to reach into the back of Caden’s throat).  I hit something hard with the Yankauer that I had not seen when I opened Caden’s mouth.  I did a finger sweep down the side of Caden’s mouth into the area just past the uvula.  What I got back was a surprise. It was a jet engine from a Lego airplane.  This pecan sized toy was lodged in Caden’s throat and covered with goobers.  I have no idea how he was getting any air around it to make the retching noise I heard when I scooped him up down stairs a few moments earlier.  I got the Lego piece out of his mouth and then suctioned the remaining goobers and saliva.  When I turned the suction off Caden jumped into my arms and could only say “Sorry Daddy,  Sorry Daddy, I sorry daddy”. My heart was racing about a mile a minute and I felt like I could cry.  I just held Caden and assured him that he would be alright.

Everything did appear to be okay until late Thursday night.  Caden popped a fever, had high respirations (common with fever) and had a ton of congestion.  Friday morning Caden did not tolerate his first tube feeding very well.  He just wanted to lay around and then the speed of his breathing began to increase.  I went ahead and put him on the Oxygen saturation meter to check his SATs.  He was hanging in the low 90s.  This all happened as his physical therapist was arriving at our house.  She, Sherry and I had a brief discussion about the incident on Wednesday as I suspected that Caden might have sucked fluid int his lungs while he was struggling to get air around the toy stuck in his throat. I went ahead and called the pediatrician and took Caden in shortly after lunch.  The doctor heard some crackles in Caden’s lower left lung and his SATs were hanging at 93 in the doctor’s office.  We were sent to MUSC for a chest x-ray.  Within the hour the nurse called Sherry to let her know that the doctor had called in a prescription for Clindamycin a very strong antibiotic used to treat aspiration pneumonia.

We are treating and monitoring Caden at home. We ask you to pray that this treatment will work.  With our new addition (two-week old Levi pictured above with Caden) we are by no means prepared to handle a hospitalization with Caden. Of course I am not sure we are ever 100% prepared for Caden to be hospitalized.  The pediatrician said that if Caden had not improved in 24 hours we needed to get him admitted and on IV antibiotics. We appreciate your prayers for Caden and our family. Please pray for healing for Caden and discernment for Sherry and me.

Caden is a big brother to two little brothers now.  His baby brother Levi was born Friday morning.  Mommy and Levi are both doing great. Levi went in for a little check-up today with the pediatrician to confirm all is well.  However it did not take long for attention to turn to our big boy Caden.  The pediatrician asked how he had been lately and I told the pediatrician that Caden had popped a 102 plus fever a few times in recent days.  I told the doctor that it was not unusual for Caden.  The doctor was not as easily convinced since Caden is on week three of a four week run of a very strong oral (g-tube) antibiotic. After a few minutes of evaluating Caden the doc recommended that we move to a three day round of Rocephin shots.  I will be taking Caden back in for shots the next two days and then we will see where we go from there.  Please keep him in your prayers.

The lesson tonight in our Growing Kids God’s Way class was titled “Rejection: Man’s Greatest Fear”.  The lesson Gary Ezzo delivered in the video ended with a point that could not have been more divinely placed in our lives today. “”Take inventory.”  While Mr. Ezzo gave this suggestion in the context of the fear of rejection in our relationships. While we did not face rejection today we faced one of the most depressing and defeating days we have experienced in a long while.

Today we took Caden to MUSC.  We visited the Orthopedic Surgeon.  There Caden’s spine was x-rayed before we met with the surgeon to talk about the diagnosis of scoliosis.  The surgeon basically told us that the time has come to ready ourselves for surgery.  The surgeon sees the curves in Caden’s back   reaching a point where modern medicine calls for surgical intervention. There comes a point with most scoliosis cases where the spine can interfere with the growth and/or functionality of the lungs.  The surgeon believes that we are approaching that point with Caden and has recommended that rods be surgically implanted into Caden’s back within the next six months to begin to straighten the spine.  We have an appointment to meet with the surgeon again in late July to discuss this further.

From that appointment we made our way to the new cafeteria.  We had lunch and ran into our favorite nurse from all the years we have spent at MUSC in and our of the PCICU.  Nurse Kay was the nurse who broke the rules ICU rules that says no one under 13 years of age is allowed.  She allowed us to bring 2 year old Riley into the PCICU to meet his 5 day old little brother Caden.  We learned some time later that Caden was no expected to live through the complex open-heart surgery scheduled for the next day.  The nurse was not certain that Riley would ever get to see his little brother alive if not allowed to visit that day.  Seeing Kay

We left lunch and went up to the main MUSC hospital radiology department.  There Caden went through a Modified Barium Swallow (MBS).  The results of the MBS were not what we had hoped and prayed for leading up to today. The MBS results were unchanged from any we have seen since Caden’s birth.  Tears welled up in my eyes as Caden climbed from in front of the video fluoroscopy and squeezed my neck.  He heard the results and all the folks in the room could say was that they were sorry, they were sorry that they could not deliver better news.

We then went to meet with Caden’s ENT who performed the cricopharyngeal myotomy just over two weeks ago.  He said that all had been done surgically and that anatomically Caden should be swallowing. He said that this is just one of those 22q11.2 things where Caden is not following the rules in the medical journals.  The ENT ended with a recommendation for some monitored feeding therapy over the next two months and then we would reevaluate things.  This therapy is to try and teach Caden some swallowing functions that should help push stuff past the Upper Esophageal Sphincter (UES).  If we can prove Caden has the physical ability to get food past the UES then he will be much more likely to be a candidate for a more aggressive feeding and swallowing therapy like the one we have looked at in New Jersey.  Right now Caden’s ENT does not think Caden would be accepted into an aggressive feeding and swallowing program since he has never shown any signs of passing a bolus through the UES in any of the previous swallow studies.

So this long day at MUSC left us in tears over Caden’s medical challenges once again.  We came home where I got down on the floor and enjoyed playing cars with all three of our boys while Sherry finished preparing the house for our class.  After dinner Sherry and I sat and found ourselves in tears once again as Mr. Ezzo reminded us to “take inventory”.  When feeling rejected, or defeated in our case, taking inventory of what you have rather than dwelling on what you are missing is great medicine and it is a message straight out of God’s word.  I will paraphrase another line from Mr. Ezzo that rang true with us tonight, “Contentment is much more important than our worldly happiness.”  Tonight we rejoice in what the Lord our God has given to us.

Please remember our little Caden in your prayers today.  Caden will visit with the orthopedic surgeon in the early morning for a six-month follow up on the scoliosis diagnosis.  Then Caden will have a Modified Barium Swallow (MBS) to test is swallowing ability.  We will then have a visit with Caden’s ENT (Ear Nose and Throat) surgeon in the afternoon to talk about the next step with feeding and swallowing.

Please pray for positive results from all of these appointments today.

It has been about 10 days since Caden got the cricopharyngeal myotomy.  This surgery was preformed to divide (cut) the muscle that causes the UES (Upper Esophageal Sphincter) to squeeze closed. The surgery itself was completed as planned without any complications. Caden did experience some respiratory issues from being intabated (on the breathing machine) during the surgery.  This required oxygen at night for about a week after the surgery.  He also had a fever during a couple of nights after coming home.  Sherry took him in to get some medication to treat the symptoms and he is now doing great.  Caden is off oxygen and is now sleeping through most nights without even needing any suctioning.

Next Monday will be a big day for Caden.  He will see the orthopedic surgeon for his six-month follow upon the scoliosis diagnosis.  Later in the same day (Monday 22nd) Caden is scheduled to get a MBS (Modified Barium Swallow). We will go straight into see the ENT to get the results.

Today was the big day.  Caden had a surgery called a cricopharyngeal myotomy.  This surgery was preformed to divide (cut) the muscle that causes the UES (Upper Esophageal Sphincter) to squeeze closed. In Caden’s case the muscle has never relaxed enough to allow for him to pass food, drink, or even his own saliva into his esophagus.  That is what has required him to have every single meal of his five years of life via a feeding tube.  Once this surgery heals for a couple of weeks we I will take Caden in for a MBS (Modified Barium Swallow). Sherry being pregnant will not be able to be in the room with all of the radiation. The expected results should show that Caden is ready to learn to swallow.  At that point we will begin to arrange for advance feeding and swallowing therapy.  I am not 100% sure we will be able to get what we need locally so stay tuned for what the next step will be.

Lots of Blood and a Sedated Echo Cardiogram

While Caden was out for the surgery today the doctors pulled about 20 tubes of blood for his immunology workup and the MUSC pediatric cardiology team slide in for an echo cardiogram.  They like for kids to be as still as possible and most five year olds can’t or won’t stay still long enough.  They forget that Caden demonstrates very good self control for medical procedures.

I will give a shameless plug here for the lessons in Growing Kids God’s Way and other teachings by Gary and Anne Marie Ezzo that have taught us that parents have a much harder time with training things like self control than do the children.  The kids will come along the way if parents have the conviction and dedication to maintain consistent character training.  The cardiologist at MUSC obviously don’t meet enough kids whose parents have the conviction and dedication that I am talking about.  None of our kids including Caden have perfect self control and never will, but we stay the course and strive to rise above the level of mediocrity as taught by Joey and Carla Link of Mom’s Notes.

Prayer Requests and Praises

Praises:

• Surgery completed as expected without complication
• Caden is fever free
• Grandparents and Nana
• Friends who visit and/or lift our family up in prayer

Requests for Caden and our family:

• Rapid healing
• Remain free of infection
• Comfort and free of pain
• Understanding and compassion from Riley and JJ
• Healthy and rested Daddy and especially Mommy
• Continued health of Baby Ozz 0.4 (we do not know the gender)

Snow tubing was the plan for the day. We were working on a trip to the western North Carolina mountains this weekend. I promised Riley some snow this winter and I was planning to deliver on my promise this weekend. Our day went horrible yesterday when I was woke up at about 4am with a tooth ache that ended with half of my day in the dentist chair. I was given some narcotics to help manage the pain so driving a mini van full of crumb crunchers in the snow and ice was not a good mix for the weekend.  Never mind the fact that the cost of the emergency dental work and a broken car window completely drained our emergency fund. Sherry and I agreed that we would cancel/postpone the trip.

Then this evening Caden popped a fever of 102.3. This fever confirmed that staying home this weekend was the right decision. Caden has been tugging at his ears this week and has had lots of goobers.  With him still not swallowing anything the excess goobers makes for some rough nights that can be especially uncomfortable if we are all crammed into a hotel room together.

Myotomy Scheduled

We have decided to move forward with the Cricopharyngeal Myotomy for Caden. This is the first step to get Caden some swallowing functionality. Caden has never swallowed anything since birth…not even his own saliva.  After this surgery Caden can enter aggressive swallowing therapy.  Up until this point no one has been willing to work with Caden due to the physiological blockage at the upper esophageal sphincter (UES).   The surgery is scheduled for March 5th.   The ENT will have to cut through the outside of Caden’s neck to gain access to his UES. The surgery will require at least one night in the hospital for observation since the procedure will take place int he main operating room area of MUSC.  We may also try to get a sedated echo cardiogram and some immunology labs at the same time.   Caden generally has very good self control and does not require sedation for an echo, but the number of vials of blood required for an immunology panel is very involved and drawing that much blood is tough on the little guy.  More details to follow.