Caden’s Page

NEW Pictures coming soon.

In the meantime you can look back at pictures from Caden’s birth week. Or you can read my first post to Caden’s Page.

Enjoy!

We had a great birthday party for Riley and Caden yesterday. Riley turned 4 years old last week and Caden will be 2 years old on Thursday of this week. We had a great group of friends and family over to our house to celebrate both birthdays at once. The pictures will be coming soon. Most were taken with the 35mm and will be on their way to Snapfish tomorrow.

Thank you to all who came and participated. Thank you for the showering of wonderful gifts to our boys. May God bless you and your families.

Surgery Update

It has been cancelled. We received a call to reschedule again last week on the very same day that we had decided to call and cancel the surgery. Sherry just told them to remove Caden’s name from the surgery schedule. The pacemaker was put in for preventative reasons in the first place and it has not been known to function properly since shortly after it was implanted back in June 2006. We believe that Caden does not need the pacemaker and his health over the past four months has proven it. We have received numerous confirmations on the decision to cancel the surgery. Not to mention, the pacemaker was turned off by the technicians over three weeks ago on the orders of the cardiologists. That decision was made without a single doctor visiting Caden’s bedside during that visit.

It is better to trust in the LORD than to put confidence in man. Psalm 118:8 (KJV)

Enough said.

Callie Stapp
Our little friend Callie and her family live just outside of Atlanta. Callie was diagnosed with the same underlying diagnosis as Caden, but with a much higher degree of complications. Callie needs to get to California ASAP. I have put out a call for airline tickets or a private jet over on The Land of Ozz and included a detailed explanation as to why they need to go to Stanford.

I know plenty of folks with hundreds of thousands of flyer miles so step on up folks. You will not find a better use for your miles!

Check out Daddy’s Blog for BIG news about Riley and a scrambled egg.

Pacemaker Story
I have left everyone on the hook about this pacemaker thing for almost two weeks now. I still don’t have it all sorted out in my head so bear with me. Sherry and I are attending a retreat this weekend and we expect to come out of this retreat with an answer to the pacemaker issue. Why is it an issue? Read on.

Well, the pacemaker test that was done during pre-op two weeks ago actually gave us some very encouraging data. While the pacemaker was reported as not being able to fire properly for a solid two months, it has still been gathering data on the heart rate. This data said that Caden’s heart rate had not dropped below 90 beats per minute since the last test at the beginning of August. The 90 beats per minute thing is very important because that is the rate at which Caden’s pacemaker was programmed to start firing in the event his heart slowed down or stopped due to a heart block, weird rhythm, or whatever. I took this information very seriously. In the past, the heart blocks always caused a rise of the heart rate to about 160+ and then a sharp decline to well below 90 beats per minute. There are no indications from the pacemaker that the heart rate has dropped below 90 in over two months now. The issue…Why do we need this thing? The cardiologist turned the thing off two weeks ago. Please continue to pray for Sherry and me. We are still sorting through how to proceed with this pacemaker.

BIG NEWS of the WEEK

Caden is really stepping out with his walking skills. Yesterday I got a call at work. Sherry was on the other end of the line with a noticeable sense of excitement.

Sherry: “You want a boost to your day?”
Me: “Sure, what’s going on?”
Sherry: “Your son…pause…Just walked all the way across the living room. And he is doing it without prompting. The therapist says that this is huge for him to show no fear and strike out walking on his own.”
Me: “We are going to have to get this on video.”
Sherry: “I already have. He has done it several times already.”

Do you have any idea what this can do for a work day? I was walking on sunshine for the rest of the day at work!

Caden will turn two years old on November 2nd. A couple of months ago the therapists said we should not get our hopes up about seeing Caden walking by his birthday. This is HUGE. Prasie God; to Him be the Glory!!!

Halloween is just around the corner. Check out my post titled Halloween – Should Christians Participate?. I have linked to a thought provoking article by Steve Maxwell titled Halloween and Halloween Alternatives.

The title may not mean much until I remind you of the two ambulance rides that Caden took earlier this year. Caden was hospitalized twice during last year’s cold and flu season due to contracting RSV (Respiratory Syncytial Virus). This past season my insurance denied the repeated request for Synagis shots. The year before our insurance approved Caden for the Synagis shots and he never contracted the virus. The shots cost about $1500 each and a patient is recommended to get one shot per month during the cold and flu season.

My argument for the shots was that no amount of money can justify the pain and suffering that Caden went through as a result of RSV last season. The insurance ended up paying last year due to the hospitalizations anyway. We did our part in sheltering Caden and cleaning anything anyone touched with alcohol wipes, but we did not have a spare $1500 lying around to pay for the shots ourselves. The insurance company was so bullheaded over the issue last year that they would not even discuss the subject with Caden’s pediatrician. This year the pediatrician’s office took a little different approach on the advice of the Synagis representative. They went directly to the drug division of the insurance company instead of taking it through the normal claims division. That got an immediate approval given Caden’s history with RSV.

Sherry called me as I was on the way to work this morning to give me the the news. She and I both thank God for getting involved in this one. We were prepared for an all out battle to get this approved this year. The experience we had in January with RSV that led to a 911 call was way too exciting to face again, ever. Sherry and I have been praying that this Synagis therapy would work out in our favor and it did. Praise God!!!

Current Condition

Caden is still being treated for an ear infection. The fever went away pretty quickly, but the congestion did not. Caden ended up on an antibiotic as a result. We saw a good bit of nasal secretions through the weekend that caused Caden to miss church. His 1-on-1 nursery caregiver (Miss Carol) came over to the house Sunday morning to watch Caden so the rest of the family could go to church. The Seacoast 1-on-1 program is part of the Kidscoast children’s ministry and it is a huge blessing to our family and many others with children who require a little extra care. The program started from a parent who saw a need for more 1-on-1 type care for some children so that the parents could attend church together.

Please keep Caden in your prayers. I still have to share some things about the pre-op visit from last week that is exciting. I don’t mean to drag it out, but tonight I am tired.

May God Bless You and Yours!!!

Caden got sick this week and was running a fever by the time we went in for pre-op yesterday. His fever got to 103 last night. The pacemaker was checked and did not pass again, but there were some interesting results. I will write more on that later. We were all worn out last night and I did not get a chance to post an update. Please continue to pray for this little guy. He is not feeling well right now and has been getting suctioned a good bit due to a ton of secretions.

The surgery has been rescheduled for November 3, 2006.

I got a really late start this morning and got to see some exciting advances in Caden’s physical therapy. The video speaks for itself. Please see the fundraising announcement below as well.

Attention Cyclists

A co-worker has asked me if I would help put the word out on a great fundraising event happening in a few weeks. Here is what Kelly had to say in an email to me today:

My father’s church (my dad is the pastor) is holding their 3rd annual Tour De Round O Bicycle Ride. The Tour began three years ago as a benefit for my boyfriend Stephen after his accident and has continued over the last few years as a benefit to a local in need. This year, the beneficiary is an infant girl who underwent heart transplant surgery in July. As you well know, the ongoing medical costs can be rather daunting and we would like to help her family.

What: 40 mile benefit bicycle ride

Where:

Bethlehem Baptist Church
12898 Round O Rd
Round O (Colleton County) , SC

When: Saturday, October 14, 2006 8:00 AM

Details as found at Active.com

“The Tour de Round O is a 40 mile benefit bicycle ride sponsored by Bethlehem Baptist Church in Round O. This is Bethlehem’s 3rd year sponsoring the event, with all proceeds of this year’s ride benefiting Teyonnia Lambert. Teyonnia, who was born on January 28th, underwent heart transplant surgery in July. To keep her in good health, Teyonnia must take 11 different medications and visit a specialist monthly. This year’s ride will help to supplement the mounting costs of Teyonnia’s care.”

I can not impress upon you how import it is for us all to help those in need. Our family has certainly seen medical expenses and tons of no medical expenses caused by long hospital stays. Caden set a single day record for pediatric heart surgery according to one lady in the MUSC billing department. Thank God for insurance and the support we have received from so many sources. Please help this family if you are able.

Please pass along a link to the details of this event to anyone who might be remotely interested. This event will take place in a neighboring county about 30 miles west of here.

We realized another victory of healing today. Caden had an appointment at the Storm Eye Institute at MUSC. You may remember that he went there last year for a check up and was found to need glasses due to being diagnosed as far sited. Below is a clip from the 12/20/2005 post.

“…the eye doctor says Caden needs glasses, but agreed to wait a few weeks to retest Caden’s eyes to give the diagnosed problem a chance to correct itself. I don’t remember the diagnosis, but it CAN correct itself with children Caden’s age. Please pray for this healing.”

Praise God for another answered prayer. They never called us and we never called them. We had plenty of things to take care of so we handed this one over to the Lord.

We pray and ask you to continue to pray for our discernment with these issues. I believe this for what it is. This is God’s power shining through again because we asked him to heal Caden. Even more amazing to the doctors at MUSC today is the healing of Caden’s left eye. You may remember me writing a very vague statement about this after the pacemaker was placed back in June. Here is what I wrote:

“We are praying that Caden will be comfortable and that both of his eyes will stand wide open. There is no value in stating the obvious and there are no known medical treatments according to the doctors. Medical studies show that symtoms often get better with time. I do not plan to give any other great details about this prayer request for Caden’s eye as I believe we should speak life over things in Jesus’ name.”June Post

You can click the images below for a larger view. The one on the left was taken in June just after the surgery. The one on the right was taken two months later. The eye doctor today said that Caden’s eye shows very little sign of ever being affected by the heart surgery.

The heart surgeon told us that the Horner’s Syndrome, that is the official name for the symptoms seen in the left picture, was most likely caused by some trauma to a nerve in the upper chest and neck area during the dividing of the left subclavian artery. The symptoms leading to this diagnosis included a squinted eye, a pupil that did not fully function, and the lack of ability to sweat on that side of the head. It is basically a partial paralysis on the affected side of the face and head. The doctors gave us no real insight as to if or when this might heal.

Often patients are given cocaine to treat this Horner Syndrome. Not a single drug was administered to Caden for this and not a single treatment was given. Praise God!!!

Pacemaker Update

There have been no change in plans. We expect to go in on Wednesday (10/4) for a full pacemaker check and pre-op work up. Caden is on the surgery schedule for Thursday for pacemaker and lead troubleshooting and repair.

Our most immediate prayer need is that the pacemaker test passes so that we can cancel the surgery date.

The October Daily Bible Reading Schedule is up on my personal blog The Land of Ozz.

We got a call today from MUSC to schedule Caden for surgery to troubleshoot the pacemaker. The new date is October 5th. We are told that there is not going to be a chance to get the MRI since the lead would need to be completely removed. We have requested a full pacemaker test during pre-op. I hope and pray that the pacemaker will pass all tests and we will be able for forgo any surgery.

Thanks for keeping an eye on Caden’s Page. Your love and prayers for our family is greatly appreciated.

The pictures in this post were taken Saturday morning just after I finished assembling a swing set for the boys. Nana (my Mom) gave the boys a swing set as a combination gift for their birthdays and Christmas this year. This is a NICE set. It is one of those kits from Home Depot where you have to buy all the wood and follow the instructions. It was a great test of my patience as a stereotypical man who likes to do things by trial and error. I actually followed the instructions on this deal and amazingly enough it worked. The boys absolutely love it.

We are still in a holding pattern as far as the pacemaker goes. It has been a really interesting few days. The last time I talked to Caden’s cardiologist, it sounded like we might be in surgery today. They were trying to orchestrate a waltz between cardiology, anesthesia, operating room staff, surgeons, and orthopedics so that Caden could go into surgery, get his pacemaker removed, roll him to radiology for an MRI, get the MRI verified by orthopedics, roll Caden back to the operating room, and then troubleshoot/repair the pacemaker. I know that is a mouthful, but it should give you an idea as to what lengths the MUSC staff is willing to go to get Caden the care he needs. All this coordination is very difficult because the MRI is currently booked 24/7 and they need about a 1 1/2 hour window for Caden because they don’t know exactly when he will show up, due to the required surgery to remove the pacemaker.

Keep in mind that the pacemaker was malfunctioning during the last cardiology visit during the first week of August. Fixing the pacemaker is the primary focus. The MRI will be a bonus if it can be done. If I have not said it already, I think it is worth clarifying that the pacemaker was not installed to pace Caden heart all the time. It is only in there for safety sake. If monitors the heart and is only supposed to fire when the heart rate drops below 90 beats per minute. It was installed because the cardiologist said they found some abnormal and missing heart beats that warranted a pacemaker for Caden. Now the thing will not fire when tested with a computer diagnostic program. They can use the computer to tell the pacemaker to speed up the heart a little bit to verify that the pacemaker will do it automatically.

The MRI has nothing to do with the heart, but an MRI can not be done on a patient with the kind of pacemaker Caden has. I questioned whether an MRI could be done with the pacemaker lead still being intact and they initially said yes. Now the story has changed. It seems that a recent clinical study on this question was done by a doctor at Johns Hopkins. The results of that study were not scheduled to be released until today. A call from the MUSC pediatric cardiology department to Johns Hopkins resulted in a regrouping on the plan for the MRI as mentioned in the first couple of sentences of this post. It appears that this study says that there may be danger in doing an MRI on a patient with only a pacing lead in place. I am guessing here, but I think this may follow the logic that led to my question to the cardiologist on this very subject.

An MRI requires all or part of a patent’s body to be subjected to a strong magnetic field. The importance of the magnetic field is explained in an article on Duke.edu tilted “Generator Basic Principles to get an idea of where I am coming from about generating electricity with magnetism and a wire. The thing is that you can move magnetism over a wire or move a wire through a magnetic field to create the most basic of electrical generators. I was concerned that the resulting electricity running through a wire that is connected to the heart could cause irregular beats during the MRI. I was also concerned that another side effect of electricity running through a small wire is that it could create heat like in a light bulb filament. Have you ever got near a light bulb while it is on? It does not take very much electricity through a small wire to generate enough heat to cause a burn from a small wire carrying electricity. A burn in or near the heart could not possibly be a good thing. If the lead wire is fairly large then it would not be as big of an issue with the heat. I will spare you the explanation on that one.

Please keep in mind that those last two paragraphs as they relate to the pacemaker lead are my personal speculation as to what effects an MRI might have on a small wire left inside the body. I am only speculating that the Johns Hopkins study follows logic related to my above explanation of electricity and magnetism.

This all leaves us with a great deal of uncertainty. At this point, Caden will not be at the hospital tomorrow (Tuesday the 19th) as we thought. The cardiologist has mentioned a remote possibility of removing the pacemaker AND the lead to allow for an MRI, but I am not sure that the surgeon will go along with that idea. There are some meetings between all the powers that be in pediatric cardiology and cardio-thoracic surgery at MUSC on Monday afternoons. The were supposed to call us after their meeting today. It is almost 11PM and we have not heard a peep out of them.

We asked grandma to stay this week to assist us with caring for Riley during the scheduled hospital visit for Caden. She is loving her time with both boys and we are blessed to have her support.

Please continue to pray for Caden and our family.

Here are a couple more pictures from Saturday. Enjoy!

This is a picture of Caden signing more when asked if he wanted to get up or swing more.