Caden’s Page

We received a call from Caden’s cardiologist at about 6:15PM this evening. It was great that Sherry and I were both at home so that we could talk to him together. Here is the scoop from Caden’s cardiologist.

The heart surgeon wants more information before proceeding with an open-heart surgery. The surgeon wants more accurate readings of the blood pressures inside the veins and arteries as well as inside of Caden’s heart. He wants this information gathered via a catheter. A catheter can give a much more accurate reading of the pressures on either side of a heart valve or a stenosis (narrowing) of an artery. The catheterization is expected to help the surgeon understand if the bicuspid aortic valve was causing any or all of the pressure differentials that led to the diagnosis of the Supra Valvar Aortic Stenosis. They will put Caden to sleep and then run a catheter up an artery to Caden’s heart, likely from a leg. They plan to approach this procedure with caution due to the low oxygen saturation numbers during the sedated echo cardiogram on Feb. 14. A normal trip to the cath-lab allows for the patient to go home the same day.

The cardiologist did not give us a date or time for this catheterization, but he expects it will be in the next couple of weeks. He did not give any indication that this procedure was being done to rule out the need for open-heart surgery. He did say that Caden’s surgery is still classified as urgent as opposed to elective or emergent. He said that this catheterization will help the surgeon go into the surgery with as much information as possible so that he can have a good solid plan from the start.

We believe that this is just one more chance for God to show his miraculous healing power. We are believing for a miracle cure for Caden. We stand on Mark 11:24 “Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.” (NIV)

Friends, I can not impress upon you enough how this scripture has proven true over the past several weeks. We have asked in prayer for specific needs to be filled, believed, and have been absolutely amazed at how creative God has been at answering our prayers. A miracle cure is there for Caden. I am sure the manifestation of the healing will be just as creative as the other miracles we have recently witnessed. Please join us in asking in prayer, believing, and then we shall receive.

Today I am sharing with you a great video clip of Caden making his way across the living room floor. This video was taken on Saturday afternoon. The video clearly shows how mobile Caden has become in recent weeks. You may remember that it was just ten days ago that I actually got to witness Caden sitting up for the first time. He has now mastered this skill and has took a leap into the toddler phase. The video clip lasts just over two minutes. It is a large file so please be patient while it loads. It is worth the wait. An added bonus of this video is that Caden did one of the splits that the physical therapist just hate. He does them so fast we don’t get a chance to stop him.

Video of Caden on the move 46 MB (This will load slow if you are not on Cable, DSL, T1, or a higher speed connection)

I talked to the heart surgeon’s secretary this week. They have not put Caden on the surgery schedule. We will let you know as soon as possible as information becomes available.

God has really been been pouring the blessings out on us lately. I have posted a story on The Land of Ozz that briefly touches on the awesome blessings that God has brought to us in the past couple of weeks.

The test (CT Angiogram) that Caden had done last Wednesday delivered no new information. I am paraphrasing here; the cardiologist said that he did not learn anything from the CT Angiogram that he did not already know about Caden’s heart. That said, Caden is still tracking for an open-heart surgery within the next few weeks. We do not expect to have any other cardiology visits before Caden is admitted for surgery to repair the Supra Valvar Aortic Stenosis that was diagnosed on February 14th. We expect the surgery to be scheduled during the month of March based on conversations with the cardiologist but the case has been passed off to the surgeon’s office for scheduling at this point.

Caden finally gave us a big thrill this week by demonstrating his ability to sit up without any assistance. I got up a few days ago and stopped by his room to say goodbye only to find Caden sitting upright in his crib with a giant smile on his face. Since then he has actually shown us first-hand how he is doing this little trick. We knew he was doing it because we would lay him down and turn our back for a few minutes and then find him sitting. For a while we would ask ourselves, “Did I sit him upright?” This is so encouraging.

In other big news, I guess I can share that we are selling our house. The short of the story is that we are still today suffering from some bad planning from a few years ago and need to down size in several ways. We believe God has something bigger in store for us in the future and we need to get ourselves free of debt and ready to respond to what ever He would have us do. Pleas pray that God will bring the right buyer for this house and provide us with the right place to move to.

I have asked in previous months for prayer but did not reveal the details. Well, now you know. I have tried to get two separate promotions in my company without success and have looked at numerous ways to make ends meet and get caught back up on bills. It is time to stop and give it to God. This is all His stuff anyway.

I don’t understand most of what is going on with our family right now but I am sure God has a reason for it all. As it sits right now, I am going to have a ton of questions when I meet Him, but in the meantime I am going to try to get over the comma in the verse that Pastor Greg shared today an just receive God’s comfort.

God blesses those who mourn, for they will be comforted. Matthew 5:4 (NLT)

It is time for me to lay down my mourning which has been wrapped up with worry, frustration, anger, and hurt. It is time to let Jesus carry it for me. The guilt I have been feeling is not of God and I need to get past it. Pastor Greg’s message really spoke to me today. There are many around me who know my situation. I did not even have to say a word as I wept in the arms of a prayer team member this morning at the end of our service. The pain has been almost unbearable at times, but I got some relief this morning from Jesus.

Sherry has had a pretty healthy outlook on things. She stand firm on the following:

And we know that God causes everything to work together[a] for the good of those who love God and are called according to his purpose for them. Romans 8:28 (NLT)

No matter what happens we know that God has a plan that includes what is happening to us at this very moment no matter how good or bad.

God bless you and yours. Thanks for checking on Caden.

Other great reading titled Ezzo Truth over at The Land of Ozz.

We have absolutely no results to share. The doctor had not finished reading the results of the test today by the time Caden got back from la-la land. Caden went through the sedation with flying colors today. He slept really good this afternoon as you can see from the picture below.

Caden’s physical therapist would not like this picture. She does not want him sitting (or sleeping) like this, but sometimes he just does it without asking permission. Caden got drunker than a three-eyed-coon on the sedation today and just could not resist a good nap when he got home. I wish I could sit like that…well, I once wished I could.

I am feeling a little better even though I got let down pretty hard at work today when I learned that I did not receive a promotion that I was really hoping to get. I made the final cut but lost out when it came down to the wire.

I did get an awesome message from our friend Robin this today that nailed my recent feelings pretty good:

“I’m sure you have moments filled with doubt, anger, fear, and rage, probably followed by guilt. But you know what? We have a Father who understands, forgives, and comforts. He watches you and knows what a blessing you are to your family, friends, and the many folks whose lives you touch without realizing it. He hears your prayers. He is in control. And thankfully, He has a plan and knows what He is doing.”

I will post an update when I get more information about the status of Caden’s heart.

Caden will be in for a test on Wednesday morning. The test to be performed will be the CT Angiogram which is a fancy x-ray of Caden’s heart and surrounding anatomy. Caden will be sedated for this procedure. This procedure also requires that an IV be inserted. Caden did experience some mild breathing problems on the 14th when they did the sedated echo cardiogram so they are not wanting to sedate him until they have a good IV running. They do not want to have him sedated any longer than necessary. They will start the IV at around 9:00am and the actual test is scheduled for 10am.

I want you all to pray for our little boy on Wednesday morning. Pray that this test will show God’s miracle healing power and just amaze us and the doctors when we see that Caden’s heart is as whole and without defect. I know in my heart that this is possible and this is what I have been praying for this past week. Also pray for God’s protection over Caden so in regards to this sedation.

With all that is going on I have been overcome with fear and worry on several occasions in the past week where I just could do nothing but cry. I need your prayer as well. I need to be strong for my family during this time and I have to tell you that it is very difficult to be strong. Please pray for me to be able to stand on my favorite verse. It is only fitting that my favorite verse was the verse of the day over at BibleGateway.com today. Our Lord does speak to us in mysterious ways sometimes and I needed to be reminded of this verse going into that hospital tomorrow with Caden.

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. 2 Timothy 1:7 (KJV)

I will post an update later in the week to let you know what the cardiologists say after the CT Angiogram. They have not called us about a surgery date as of today. You can read more details on what is going on in the previous posting below.

I have a couple of really good pictures that Sherry took of Caden this evening during his bath. Click HERE and HERE.

The shortest version of this story is told in the title of this posting. We finally got Caden in for his sedated echo cardiogram today and ended up with alarming results. Caden is being scheduled for open-heart surgery within the next several (3-5) weeks. The cardiologist identified a problem that they want to get repaired sooner than later. The condition that has been identified is called Supra Valvar Aortic Stenosis. The simple definition for Caden’s diagnosis is a narrowing of the aorta just above the aortic valve. This narrowing is not in the same area where Caden ‘s Interrupted Aortic Arch was repaired shortly after birth. There will be another test next week called a Computed Tomography Angiography (CTA or CT Angiogram) that will gather more information in preparation for the surgery. This CT Angiogram is basically a fancy x-ray that allows for a computer to create 3D images of a patients blood flow in and around the heart to be used in planning treatment. The CT Angiogram is not expected to change any plans for the surgery. The echocardiogram results today were impressive enough that the cardiologist was talking to the surgical team about scheduling even before informing us of their findings. We do not have a date but we expect the surgery to be completed prior to the end of March based on our conversations with doctors today.

I know I have spoke of a bicuspid aortic valve recently, but that will not be addressed during this surgery. The valve size and function is not a primary concern relative to today’s findings. There are other factors complicating this pending surgery, but they are related to the size and position of the coronary arteries and the thickness of the left ventricle walls. The left ventricle is having to work much harder to get blood past the narrow spot. This extra work is causing the thick walls to reduce the capacity of the left ventricle. I believe that the extra work and reduced capacity of the left ventricle are the biggest driving factors behind this surgery at this time because the cardiologists believe that this symptom is progressing. We expect more details on these things after the CT Angiogram next week.

In other news this week we learned that Caden also needs surgery on his pallet. He has been diagnosed with a submucous cleft pallet. This condition is believed to cause part of Caden’s swallowing difficulties as well as speech delays. We have noticed that his attempts to say dada have come out more like nana. The results of a FEES (Fiberoptic Endoscopic Evaluation of Swallowing) study yesterday explains our observations of Caden’s speech. The FEES Study is where a very small fiber optic camera is inserted through the nose to get sort of a road-side view of swallowing functionality from the back of the nasal cavity. The findings were very clear to the doctor and speech therapist conducting the study yesterday. Caden’s pallet muscles were not functioning properly during the study to allow for the uvula to be pressed against the back of the nasal cavity as required during swallowing and speech activities. The answer to this is to reposition muscle tissue in the pallet to get a more natural functionality of those muscles during swallowing and speech activities that require the Uvula to close of the nasal passage. The ENT (Ear Nose and Throat) doctor believes that this diagnosis could be a major contributing factor to Caden’s swallowing problems. The official diagnosis is a velopharyngeal insufficiency. The accepted treatment for this is a Z Plasty.

“During the last 15 years, the Furlow double-opposing Z-plasty procedure has become accepted as a means of gaining palatal length and restoring the velar musculature anatomically. The Furlow procedure is effective in patients with unrepaired submucous cleft palate and in patients who have undergone previous cleft palate repair and demonstrate a midline “through” or muscular diastasis. It is especially effective when the gap between the posterior pharyngeal wall and the velum is quite small and centrally based.”(Source)

This latest finding with Caden’s swallowing will be considered when he sees a craniofacial team next week here at MUSC. This team includes the ENT who made the recent diagnosis. We are fairly certain that the team will want to do the Z-Plasty to correct speech problems regardless of their recommendation on a next step for treating Caden’s swallowing issues. We thought on Monday that the Z-Plasty would get done in March, but giving the echo cardiogram results the Z-Plasty will not be signed off on by the cardiologist until Caden’s current heart condition is repaired and healed.

The protruding artery against the esophagus is still a consideration, but will likely not be addressed in the short term. The pending heart surgery would not provide easy access to the area where the protruding artery is located plus the ENT wants to address the pallet first. A surgery to repair the protruding artery would likely be done through and incision in Caden’s back. The pending surgery that we learned of today will require a full open chest cavity focusing on the current condition as it was with Caden’s first open-heart surgery.

We request that you pray for our little boy Caden and the rest of our family. Riley was in a daze this evening. He is obviously sensing the level of stress and concern related to the news Sherry and I received today. Even at three years of age he is showing an unbelievable amount of compassion for his little brother.

I plan to write more about my feelings from a spiritual perspective on my blog soon. The short version of what I will write about is that I believe we are getting attacked from all sides by the enemy (Satan). Sherry and I have grown closer to God in the past several months than either of us have ever been in our lives. We have been attacked through our finances, through our relationships with others, and now again through the health of our child. We are in the process of making major financial changes and trying to repair very important relationships in the midst of today’s news. We stand firm in our faith in Jesus Christ and know that the Lord our God will deliver us through it all.

Today was great for Caden and our family. Caden had an orthopedic appointment at MUSC that turned out great and he had another couple of firsts today with his development.

The orthopedic appointment was scheduled as a result of a spine x-ray taken a few weeks ago that showed signs of scoliosis. The x-ray was ordered at the recommendation of the Greenwood Genetic Center visit several months back. The appointment went great because the doctor delivered great information. The doctor said that at Caden’s age and with the how good Caden’s back looked, he would not recommend doing anything at this time. He recommended that Caden be allowed to proceed as any other little boy with normal activities. PRAISE GOD!!! Not only did this doctor deliver great news, this had to have been one of the best appointments we have had at MUSC yet from an administrative standpoint. They moved folks through their clinic smoothly and with little wait time.

One of the other big events of the day was special to me most of all. Caden actually said Dada today. I was holding him during the appointment while a medical student examined him and he looked up at me and said “Dada”. I had to ask the medical student if she caught that and she said she did. Sherry was busy with Riley, but she did get to see Caden going through the motions. We have been taught by the speech therapists to show Caden how to stick out his tongue when he is jabbering an he will automatically say Dada. This exercise of sticking out the tongue is an exaggeration of the placement of the tongue to get the “D” sound. It is the first time he has actually made sound while sticking out his tongue. We have been working on this much longer than mama because it is suppose to be easier.

The other big event of the day was that Caden went from a laying position to sitting without any assistance from one of us. Sherry did not see it happen, but Caden did it. She and Riley were at the table for lunch and Caden was on the floor in the family room playing while getting his noon tube feeding. She said that she looked over at him one minute and he was on his tummy and the next minute he was sitting up.

Tomorrow will be another day at MUSC. We will take Caden for a sedated echo cardiogram. During this visit the cardiologist will be looking at Caden’s aortic valve. Caden has been diagnosed with a small and bicuspid aortic valve. That valve was believed to be small because the aorta was only supplying Caden’s head and neck with blood at birth. The surgeons and cardiologists were concerned as to whether that little valve could handle the load after attaching the descending aorta. The rest of his body was getting blood from the PDA where the descending aorta was attached at birth. Well, the aortic valve not only pulled its weight, it has been surprisingly strong since Caden’s open heart surgery at six days old back on 11/8/04. The other thing they will be looking at is the artery that was found to be protruding in on the esophagus.

Please keep Caden in your prayers tomorrow. He will get sedated for this procedure, but it will be just enough to make him sleepy.

Please remember to thank God for the healing of the RSV symptoms. Caden got through the RSV (Respiratory Syncytial Virus) much easier than other kids from what we hear from other parents who describe their experiences with their kids and RSV.

Thanks for checking in on our little guy!!!

Praise God! Caden spoke for the first time today. The file below is a 22 second file that I captured with my iRiver MP3 player/recorder. You can hear Caden say “Mama” a couple of times and them you will hear Riley trying to get him to say “Dada”. Sherry, Riley and I are all entertained by Caden’s new skills. I hope you enjoy!

MP3 of Caden saying Mama

One other cute thing Caden is doing is scooting while in a sitting position to get where he needs to go. Not that he need to go very far with Riley around. Riley keeps Caden stocked with toys most of the time. Caden sort of picks himself up by pushing on the floor while sitting and moves himself in the direction he wants to go. For some reason he is just refusing to crawl even though he regularly rolls over onto his tummy and pushes his torso off of the floor like he’s doing a push-up.

Tomorrow Caden will be 15 months old. Happy 1.25 Caden!!!

Caden was discharged from the hospital this afternoon. He is doing pretty good. He continues to improve.

We had a busy night last night due to a little game of musical rooms. It seems that Caden was the oldest kid on his ward and the emergency room had a couple of one week old babies waiting to get a bed in 8D where Caden was at. That was the only ward where they could send little babies due to the skills of the staff. The nurses knew Caden was improving and would likely go home so they asked us if we would mind relocating to another room on the 7th floor. We knew all too well what it was like to wait in the ER for a room so we agreed to move right way so that those babies and families could get a room. That was at about 10:30 last night. Caden got settled into his new room and than I came home. Sherry stayed with Caden until they discharged him this afternoon.

Riley was happy to have Caden home. Riley told Sherry last night that he missed Caden.

Caden was in the floor playing and having a big time when I came in from work this evening. He’s beginning to share his big smile a little more freely now that he is feeling better and is back on his own turf.

Riley and Caden’s Grandma did well with her procedure on Thursday. Thank you for your prayers and support this week for Caden and our family.