Caden’s Page

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.

This entry was posted on Tuesday, February 14th, 2006 at 10:01 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.