Caden’s Page

Caden had his first appointment with the infectious disease clinic at MUSC today. The appointment came at a good time. The nights have been long and hard for Caden recently. His secretions have increased and begun to turn colors. That almost always means he is headed for fever and/or lower oxygen saturation numbers. And that translates into a trip to the pediatrician and some rough nights for Mommy and Daddy until the bug is over come. The nights have been long as Sherry and I cannot remember the last time we got a full night’s sleep without having to get up and suction Caden. Recent weeks have required one of us to be up approximately every 2 hours.

Caden has suffered form chronic sinus infections since birth. The theory is that his lack of ability to swallow added to his sub-mucus cleft palette creates a perfect storm for sinus infections. Since Caden cannot even swallow his own secretions (spit), the secretions pool up in his throat until they begin to cover his airway. Then he coughs or blows. Since his palette does not seal off his sinus cavity from his airway the secretions are not coughed/blown out his mouth. Instead the path of least resistance out of the upper airway to the tissue is always via his nose. That means that every germ that goes into his mouth due to chewing ends up getting sampled by his nose and sinuses.  The doctor in the infectious disease clinic pretty much agreed with this theory. He asked us to try a new combination of drugs. He prescribed 21 days of a new antibiotic (haven’t used it in a while) and Nasonex. He asked us to deliver the antibiotic, nose spray and Xyzal and then return to see him in a month.

The quality of life would be greatly increased by Caden learning to swallow and not have to be fed via a feeding tube. Another medical consideration would be to allow his digestive system to deal with germs that he takes in via his mouth. The feeding therapy that we have discussed before will begin new chapter next week. Caden will begin seeing a new speech/feeding therapist at MUSC. His previous MUSC therapist resigned. We are not happy to see her go, but understand her frustration with being forced to take paid time off or leave without pay when patients cancel appointments. Medicine seems to be as much about the bottom line numbers these days as delivering quality care. Anyway…The new therapist wants to challenge Caden during a MBS (Modified Barium Swallow).

While we are certainly hopeful that Caden will gain swallowing functionality we are moving forward with Caden’s tube feeding regiment. Caden has begun a new formula that contains pureed chicken and vegetables. The formula is called Compleat Pediatric and is made by Nestle. The new formula much less concentrated and requires more volume. Caden went form getting three cans (24 ounces per day) of his old formula that gave him just under 1500 calories per day to now getting five cans (40 ounces per day) of Compleat that totals about 1300 calories per day. The nutritionist we are working with from Cincinnati Children’s Hospital recommended lowering Caden’s caloric intake. She said that 22q11.2 kids have a tendency to be over weight with low muscle tone. Even at a full two years younger than his older brother Riley, Caden has frequently out-weighed Riley by a pound or so over the past year. This motivated Riley to eat his peas and carrots because he wants to ensure he retains the big brother title in every way possible.  The new formula requires more volume, but does allow for the total water for hydration to be reduced.  I believe the new formula contains approximately 82% water to dilute the pureed food down enough to get it through a feeding g-tube.

The rest of boys are doing great.  Josiah has learned that not everyone thinks he as cute.  While on a date this past weekend he told Sherry “not everybody talks to me Mommy.”  he was being cute and trying to engage other shoppers in the store and not everyone was returning the greetings. Riley is doing great with school.  He has picked up some fun new subjects in addition to reading, math, piano, and scripture adventures.  He is learning Latin and he is learning how to type using a fun typing game on the computer. He is a very avid reader and loves to complete 1000 piece puzzles…all by himself.  Levi is nearing his 1/2 birthday mark and has been on solid foods for over a month and loving it.  He is rolling over and jabbering.  He is a cute as can be.  While a little thinner, he looks almost exactly like Riley’s 6 month pictures.

With that I want to wish you a very Happy Thanksgiving!!!

The before xrays on the left were taken on August 2, 2010. The after xrays on the right were taken on October 3, 2010 while Caden was still in the hospital recovering from surgery. VEPTR Rods were surgically placed in Caden’s back on September 28, 2010 at the Medical University of South Carolina.

The primary purpose of this VEPTR rod surgery is to prevent the spine from crowding the heart and lungs inside the chest cavity. Caden will have to have surgery about every 6-9 months to adjust the rods as his body grows.  The curve of the scoliosis in August was measured at approximately 75 degrees. We do not know the current post surgery curve measurement, but it is estimated at less than 40 degrees. We do know that Caden gained 1 3/4 inches in height as a result of this surgery.

Praise God! The good news results of the biopsy of my (daddy’s) esophagus came back late this afternoon.  The nurse left me a message simply saying that everything came back fine from the biopsy.  The down side is that the procedure I had last week has not accomplished the task of stopping the sick spells I have been having on and off for about a year and a half.  These stomach bug type spells drove me to the battery of tests and eventual the botox injections into my lower stomach outlet to intestines due to an abnormal gastric empty study.  I had another stomach bug type spell lasting about 12 hours this past Monday night.  That was just six days after my procedure.

If you follow me on Twitter or Facebook then you know Caden went to the ER over the weekend.  Some swelling popped up on his back on Sunday morning.  I called the surgeon and they asked that we bring Caden into the ER at MUSC for evaluation. They drew blood and decided after some discussion to let us go home and instructed us to monitor for fever and worsening of the swelling. Well later that night (2am) a fever of 102.3 appeared.  I called the surgeon and actually got the exact same guy who examined Caden earlier. He said to make sure the fever came came down with meds and then call the clinic if the later morning around 9am.  Caden’s surgeon wanted to see Caden so we took him in to MUSC on Monday.  They drew fluid of the swollen spot and sent ti to the lab.  The surgeon said it looked like old blood that was probably working its way to the surface due to Caden’s increased activity.

As for activity, Caden is now sitting, walking and even doing a little shuffle type run (with a big grin on his face).  However he is favoring his left side and limping on his right foot just a bit.  His gate (stance and walk position) is different than before the surgery.  Not only is he limping on his right foot but his right foot is turned out slightly.  This seems to have gotten worse over the past day or two.  Caden is scheduled to see the orthopedic surgeon again on Monday and we will ask why this condition exists and seems to be worse in recent days.

We (Sherry mostly since she is home all day) has been experiencing difficulties with Levi’s feedings.  He has been completely on formula since well before Caden’s surgery, but has recently started crying after about 1 or 2 ounces into a feeding. Burping him, and warming or cooling the formula helps at all.  Sherry has seen the pediatrician about this and they along with us are a bit baffled. They think maybe his tummy is a little upset but not enough to cause noticeable reflux. He has been Prevacid since before switching to the bottle.

Oh…Sherry did complete the process to get Caden a disabled parking placard.  He had to get a SC State ID card first as I suspected and in the process they made him “make his mark” for a signature on the card.  Sherry helped him “make his mark” and it is a very cute ID card.  Now Riley wants one. 🙂

In super fun and exciting news…This coming Monday the 18th of October is a Big day for Riley as he turns 8 years old!  Please join us in wishing Riley a very Happy Birthday!

Thanks for checking Caden’s Page.  Your prayers and support for Caden and our entire family are greatly appreciated.

PS…I posted a very good article on GrowingKids.org tonight from Mike and Bev Linder about parenting a special needs child.  It is good encouragement for all parents.

Caden has been out of the hospital for three days following his scoliosis surgery and we are finally getting back to “normal”. Life is a somewhat new normal for our family for at least a season, but normal none the less.  Caden has come out of this scoliosis surgery with a much slower recovery than from previous surgeries.  His mobility is much more limited than we expected.  His center of gravity is off even when trying to sit, particularly obvious when sitting without anything to lean on.  He is walking now (assisted).  We are staying close and holding on firmly to at least one of his arms.  This morning was Caden’s first trip down the stairs.  He was VERY guarded as I held one arm and he held the handrail with the other hand. Caden is spending the majority of his day laying on an air mattress in the living room floor.  He does roll over on his own, but has not yet taken the initiative to sit up or stand on his own.  I showed him how to move himself to a sitting position so he has an idea how to make the transition, but is not interested in exercising this new skill.

Caden was discharged from the hospital while still requiring oxygen.  The resident for orthopedics did not initially want to discharge Caden on oxygen.  He said that “He [Caden] didn’t come in on oxygen so he’s not leaving on oxygen”.  My response was that he came in on an antibiotic that was prescribed due to low sats and the antibiotic was not restarted immediately after surgery per our request.  Then Caden began to improve once Rocphin does started a few days after surgery at the order of the general peds folks.  The conversation ended and the orthopedics attending physician came in a couple of hours later to tell us we could leave as long as the chest xray showed improvement….and cardiology and general pediatrics agreed with us managing Caden’s oxygen at home.  The xray came back looking better and everyone agreed with our departure.

Caden is requiring less pain medication.  He is still waking at night a couple of times, but he is also getting by with only Tylenol and Motrin during parts of the day.

About two months ago I explained some medical concerns that I had.  Yesterday I went in for an EGD with dilation and botox.  Yes…I got botox injected in the lower stomach opening that leads to the intestines. I showed abnormal results on a gastric empty study that led to this procedure.  It seems that my stomach has been taking nearly twice as long to empty as normal.  The doc also took a biopsy of my esophagus.  I think I have had a biopsy done during a past EGD with negative results, but hearing from they doctor that he felt a biopsy was warranted rattled Sherry none the less.  The logistics of getting the procedure done was a bit interesting when factoring Caden’s condition in.  Sherry and I worked it our where Sherry’s dad would take me to the procedure, but that would leave Sherry’s mom unattended.  Dara has not been left alone for more than a few minutes since her hospitalization back in August.  Some days she does not even get out of bed and yesterday was one of those days.  To prevent me from having to reschedule my procedure we decided to relocate our gang over to Sherry’s parent’s house while Joe took me to Roper St. Francis Hospital. Once my procedure was over Joe took me back to their house.  Sherry took me by Wedndys for a frosty.  It all worked out even though it was a very hectic and chaotic morning.

Today Sherry took Caden in for a follow up with his pediatrician.  They had not concerns other than what looked like a some infection trying to flare up around the stitches used to close the hole in Caden’s leg caused by the arterial line.  A little antibiotic cream was prescribed to treat that.  Sherry asked the pediatrician to sign off on a temporary disabled parking placard.  We both agree that Sherry needs all the help she can get with moving Caden form the vehicle into buildings.  The pediatrician agreed and  signed the form.  Sherry went the extra mile and went to the DMV with all four boys to try and get this done as soon as possible.  We thought form reading the SCDMV form that they would want to take Caden’s picture for the placard as shown in the example on the SCDMV web site.  The new pictured placards are intended to keep people from abusing disabled/handicap parking spaces when the vehicle is not being used to transport the disabled person.  Unfortunately what Sherry learned form her visit to the DMV was that they not only want a signature form the doctor on the form, but they also require a prescription written by the doctor for the disabled placard.  So her trip to the DMV was not as productive as hoped.  In addition to the wasted DMV trip she got to the gas station and realized she was missing her debit card.  We tracked it back down at the Wendys from yesterday where she used it to pay for my frosty and fries. 😉 Needless to say this week has been interesting.

The new norm seems to be a much less mobile Caden for a season.  In addition to being less mobile we will be changing Caden’s feeding regiment to the new formula that arrived today.  It is less concentrated but supposedly more healthy.  It is made from pureed chicken, vegetables, and fruits.  The new less concentrated formula will require more frequent boluses of formula.  His additional water intake for hydration will decrease so the total number of tube feeding events per day will be near the same.

Oh..one last thing.  We did finally get to measure Caden and compare it to his height to what it was the night before surgery.  The net gain in height was approximately 1 3/4 inches gained as a result of the VEPTR Rod scoliosis surgery.  The decrease n curve is estimated to have gone from 73 degrees down to the 30-40 degree range.  I will get specifics once I pull a copy of Caden’s records and images from the past week.  I like to read the doctor notes to see what they did share with us after a visit or surgery. 😉

Prayer Requests

• Caden’s rapid and full recovery
• Caden’s comfort
• Negative results for the biopsy taken of my esophagus
• Strength for Sherry! as I have returned to work and Nana has returned home

Caden had a big day getting out of bed for the first time since surgery. The process really wipes him out, but it is a step in the right direction. The second time out of bed we took a wagon right to the MUSC Atrium. Riley, Josiah, Levi, and Nana were visiting so it was a fun time for everyone. Click on the slide show pictures below to see a larger version photos of Caden taken during his journey through the VEPTR Rod surgery to treat scoliosis.

Caden’s day was not so smooth, but his night has been great so far.  He did have a fever again, but the doctors have finally agreed to add an antibiotic to treat sinus and ear infections as well as pneumonia.  They are now giving Caden Rocephin via IV.  There is no diagnosis of pneumonia, but this will cover Caden in that area as well.

There has been some confusion over who is calling the shots on Caden’s care ever since the surgery on Tuesday.  The surgeon said, I am just the technician” and the attending in the PICU said they deferred to cardiology. The cardiologist initially said they were only consulting on Caden’s care due to his heart history and they repeated that stance today.  But then the general peds doctors on the floor said they are consultants on Caden’s care and the primary care doctor is the orthopedic surgeon who initially said he was just the technician.  I get the fact that the orthopedic doctor should drive the recovery of the surgical process, but Caden came into the hospital on an antibiotic for sinus and ear infections.  His ears have been running and he has been congested. The congestion can and may very well be attributed to the anesthesia, but he ears…no.  Caden has been retaining a lot of fluid and has required a couple of doses of lasix type medications, but getting an order written for lasix has been like pulling teeth due to the circus of “Whose on First” style communication. This is not our first communication issue related to the orthopedic surgery department here at MUSC.  Poor communication is what pushed us over the edge to seek a second opinion from Children’s Hospital of Philadelphia a couple of years ago:

“The reason for wanting a second opinion is that we are not 100% comfortable with the communication between the orthopedics doctor and us. He is not quite as forthcoming with information as we prefer to have. The information has varied with little to no explanation… ” Scoliosis Diagnosis Update, April 2008

Needless to say I am having to exercise an above average degree of self control and suppress my (choleric temperament driven) desires to grab a few of these doctors up by the collar and tell them to lead, follow or get out of the way. As long as we keep our cool and follow up with the nurse to ensure the doctors write orders for what they say they are going to do we should be fine.  So far that has been a bit of a challenge, but we are working on it.

Finally, seven hours after ordering the Rocephin Caden finally got his first dose.  He is resting better now than I have seen his rest since the surgery on Tuesday morning. His oxygen SATs look good, however he is still getting 2 liters of oxygen via cannula and skunk spray blow by at set at 10 liters.  His heart rate is down to 140 verse 175 last night. BTW…Caden’s no pain, fever free baseline heart rate is about 95-105 while sleeping. Do you know what your child’s normal heart rate is?  If I didn’t have a child like Caden I wouldn’t. Anyway, his fever has disappeared and he finally got some medicine to help with the itching.  I’m not sure why they don’t prescribe anti itch medicine with morphine in the first place. They did with Sherry when she had her last C-section in May. Even without the Morphine Caden is likely itching due to some of the adhesives used on leads, IVs, and other devices we have not even been able to see on his back. The picture on the right shows how Caden’s skin reacted to adhesive during a heart surgery two years ago this week. (click the image for a closer look)

I have not shared the following outside of my Facebook page, but I feel that it is very important to share so that you understand the greater context of what our family is dealing with right now, especially for Sherry.  Sherry’s mom has been battling an very aggressive form of brain cancer since being diagnosed in late March.  Sherry’s mom and dad (Joe and Darla) moved back to the Charleston area before Christmas to be nearer to us and provide help with our boys.  We realized later that God was putting them nearer to us so that we could help them instead of them helping us. Sherry’s mom has been through chemo and radiation and is not back on another round of chemo.  She has been very tired in recent days and has been upset that they have not been able to help more during Caden’s recovery.  I ask that you pray for healing for Sherry’s mom. Tonight Joe and Darla were able to bring Sherry dinner.  We were very glad to see her mom be able to get up and about today.

Thanks again for following along and praying for Caden and our family. He is a strong boy, but none of this would be bearable without the strength the Lord brings to Caden and our entire family. We ask you to continue to pray for Caden as well as his little neighbor from back in the PICU. Her grandma says her report was even better this morning. Also keep our little friend Olivia in your prayers. We learned that she was admitted to MUSC with an extremely high fever due to pneumonia. You can read about Olivia’s progress on her Caring Bridge Page.

Caden has been moved out of the PICU (Pediatric Intensive Care Unit) into a regular private room (new wing) of the MUSC Children’s Hospital. That is the good news.  The bad news is that he popped a 102.6 fever this evening.  His heart rate has been very high as a result.  There has been no real speculation on what has caused the fever.  However Caden has been tugging at his ears and he is no longer on the anti-biotic that we began last week to treat the sinus and ear infects.  Sherry and I believe the ears is likely causing the fever.  As of this hour (10 PM Wednesday) he is sleeping and there are signs the fever is about to break. He is sweating and his heart rate is slowly coming down.

Cardiology Update

Caden’s sedated echo cardiogram showed no change with his heart.  The cardiologist are comfortable with how the repair of the aorta has held up since Caden’s last open-heart surgery.  In even better news, Caden is off telemetry now and showed absolutely no signs of heart block while being monitored in the OR and PICU.

Pain Management

Caden’s pain medication (Morphine drip) was more than doubled this evening.  He was getting .4 MG with breakthrough doses every four hours. The breakthrough doses did seem to help some initially, but today he has been in pain pretty much all day.  Sherry said he grunted even in his sleep.  Now they have him on a 1.0 MG drip and he is much more comfortable.

Caden’s Little Neighbor

It was a very long night in the ICU last night after I completed the blog post.  I had just been asked to leave the ICU due to the condition and amount of work having to be done on the little girl in the bed next to Caden.  I had the privilege of praying for this little girl with her mom and grandma.  Her grandmother is a great woman of faith and I could tell beyond a shadow of a doubt that this lady had a personal relationship with Jesus.   We paced the halls of the 8th floor of the Children’s Hospital and prayed for nearly two hours for their little girl and every child in the ICUs.  Finally the doctor finally came out to tell the mom and grandmother that they had stabilized their little girl.  It was such a joy to share the night hours with this family and see the power of God at work when the medical professionals were loosing hope.

Praises

• Caden’s continued recovery and move out of the ICU
• Willingness for doctors and nurses to listen to parental input
• Family (Nana) serving us by taking care of Riley, Josiah, and Levi
• No evidence of heart block and off telemetry

Prayer Requests for Caden

• Protection from fevers
• Protection from infection
• Free from pain
• Rapid healing for Caden

Prayer Requests for Sherry and me

• Protection for our health
• Safety as each of us travels over 50 miles round-trip
• Humility with hospital staff
• Discernment
• Time to share with Riley, Josiah, and Levi
• Continued understanding and support from my employer

Folks who have been to our house lately have met Caden’s Skunk. It is a stuffed animal he chose from the gift shop during a trip to the SC Aquarium.  The skunk actually went to the operating room with Caden today.  The skunk even got his own ID bracelet. It was very cute.  Now that Caden is in the PICU (Not PCICU as originally expected).  The PCICU did not have any beds available and I get the impression these guys have dealt with a few back surgery patients before.  I’ll elaborate shortly when I get to the log rolls.

Back to the skunk.  The skunk has come to the rescue tonight as a respiratory therapy assistant.   Caden still needs oxygen since all the anesthesia has not yet worked its way out of his system.  He was doing fine on an oxygen cannula until he went to sleep.  He began mouth breathing and stopped getting the needed Os through his nose via the cannula.  So the nurse and respitory therapist said he needed a oxygen mask to deliver the O2. Caden didn’t agree and became very agitated with the mask on.  It was a hill I could not die on so I recommended blow-by oxygen.  That basically means that you put the mask near the patient’s face and crank up the volume so it blows by his mouth/nose and gives him the Os he needs.  It worked while I was holding the mask, but I could not hold the mask all night.  Enter the skunk.  I strapped the mask tot he skunk and put the skunk in front of Caden’s face.  Everyone was happy, except maybe the skunk. Now we have a skunk spraying oxygen to keep Caden happy and more importantly, healthy.

VEPTR Rod Recovery Process

Log Rolls

About eight hours after Caden arrived in the PICU they started doing log rolls every two hours.  That means they roll him to ones side for two hours and prop him up with pillows and then they roll him the other way for the next two hours. This is repeated for about the next 24 hours.

Recovery and Pain Management

Caden has been in a good bit of pain.  He is on a continuous Morphine drip and can have break-though (extra) Morphine every few hours as needed.  He has needed it several times since the surgery.  Caden has three separate IV lines plus an arterial line.  He is on telemetry, oxygen, and O2 sat monitor, and has a foley (urine catheter). I say all this because I know some folks are watching this process as they prepare themselves for their own child to go through it.

Praises Report

• Caden went in this morning with a peace about him and even helped hold the mask while they put him to sleep
• Caden is fever free

Prayer Requests

• Protection from infections for Caden
• Rapid healing for Caden
• Minimal/controllable pain for Caden
• Understanding and compassion from Riley and Josiah
• Protection for Mommy’s and Daddy’s health

I have a special prayer request for Caden’s little neighbor.  I’ll share what Sherry wrote on her Facebook page earlier tonight:

“Please pray earnestly for a 2 year old little girl that was in a car accident and is in critical need! Mom, dad, and 4 year old sister have injuries too but this little girl needs a miracle. This is Caden’s neighbor and she has been VERY heavy on my heart.”

I am completing this while sitting in the waiting area.  The little girl’s condition became more severe and the staff became uncomfortable with my presence and asked me to leave. I will sign off and join you in praying for this little girl and her family.

Tuesday is the big day. Caden is scheduled for another major surgery this week. He will be getting VEPTR rods placed in his back on both sides of his spine. These rods will be attached to the rear of his rib cage at the top and to his pelvis on the bottom end of the rods. The VEPTR rods are titanium adjustable rods that will need to be lengthen approximately every 6-8 months as Caden grows.

We expect for Caden to be the first or at least a very early case on Tuesday. The actual surgical procedure takes approximately five hours. After Caden is sedated but before the surgery begins they will be drawing some extensive blood work for immunology and endocrinology. These tests take at least ten tubes of blood so we try to wait until Caden needs to be sedated to draw this much blood. Caden’s cardiologist also wants Caden to have a sedated echo cardiogram before they turn Caden onto his belly and begin the back surgery.

Once the surgery is complete Caden will be transferred to the PCICU (Pediatric Cardiology Intensive Care Unit).  Caden will be transferred to a regular room after he has stabilized and no longer requires a help breathing.  The total hospital stay is estimate to be a week to ten days.  In the PCICU Caden will be on telemetry to check to ensure he continues to not have heart blocks. Caden did have a total heart-block during a catheter procedure back in February 2006 where his heart completely stopped and he had to be given chest compressions. After that incident Caden had other heart blocks that eventually led to him getting a pacemaker. Since the removal of the pacemaker two years ago we have been optimistic that Caden would never need a pacemaker again. His cardiologist likes to be a bit more objective in his evaluation of Caden’s cardiac status so they will be watching him closely for at least 24 hours.

This VEPTR rod surgery to correct scoliosis is a very big surgery and has Sherry and I nervous. We are venturing into uncharted territory with a major orthopedic surgery. I say that to lead into our prayer requests leading up to Tuesday.

Prayer Requests

• Protection from infections for Caden (before, during, and after the surgery)*
• Peace of mind for Caden
• Rapid healing for Caden
• Minimal Pain for Caden
• Understanding and compassion from Riley and Josiah
• Protection for Mommy’s and Daddy’s health
• Discernment for Mommy and Daddy
• Confirmation that this is the right time for this surgery*

* Caden has been showing signs of ear infection in both ears.  he is already on the most powerful oral antibiotic available and got three rounds of Rocephin injections last week.

How you can help

Sherry and I are often asked what kind of help we need during these lengthy hospitalizations.  The biggest help is to visit us around meal times so we can make a run to the cafeteria without leaving Caden unattended in his room.  Time of particular concern are during breakfast and lunch.  We like to have a family member or friend to be there in the room with Caden to ask doctors and/or techs to return when Sherry and/or I are in the room. 

Thank You

Thank you all for checking on Caden and our family by visiting this blog.  This blog will be updated more frequently over the next couple of weeks so you can check back or subscribe to get an RSS or email updates when a new information is posted. You can also follow me on Twitter.