Swallow Study / Cade Update

You can read my long and complicated medical explanation or just scroll down to see a cute pic of Cade...

Cade's palate and jaw were malformed due to his chromosome deletion and he has struggled with feeding issues since birth. He currently takes all of his nutrition by mouth and almost all liquids via G-tube. Over the last 2 years we have been able to slightly increase his oral intake of liquids to sips and I thought that his ability to handle liquids improved after his tonsillectomy. We have met a couple times with a cranial facial team (cranial-facial surgeon, orthodontist, dentist, speech therapist, social worker, nurse) in Austin to discuss surgical options for Cade's soft palate. Cade was due for a swallow study and the team wanted to see how he handled liquids. I was positive that Cade did not aspirate because he has not had pneumonia since he was 15 months old.

So we went for a swallow study... In a swallow study his food and drink is mixed with barium to make it visible on x-ray and then fed to Cade while we watch from a profile view. A speech pathologist and radiologist watch the x-ray to see how the food and drink move through the mouth and into the esophagus, evaluate the coordination of his tonuge and swallow, and check for aspiration (food/drink going into the lungs). I was very disappointed to see that almost every time Cade aspirated liquids thinner than honey. Cade's problem is that his soft palate (a divider that separates the oral and nasal cavities and moves with swallowing and talking) is too short (not to be confused with cleft) and it doesn't close off his nasal cavity when he takes a drink. So liquids go up into his nasal cavity and down his esophagus. Cade protects his airway and lungs from the liquids that he sends immediately into his esophagus but then the liquids that went into his nasal cavity come down and he then aspirates those. The radiologist seemed to think that Cade would never swallow correctly without surgical intervention on his palate. They told me I couldn't give my baby sips of water anymore and he signs "thirsty" constantly. I cried the whole way home like the baby I am because it seems nothing can come easy for my poor Cade.

So I fully expected that we would be scheduling surgery at the follow up visit with the cranial facial team. Again, I was disappointed. The cranial facial surgeon said that it was possible to do a palate lengthening procedure and it could help with his swallowing difficulties and possibly even speech problems. However there would be no guarantee that it would help and it could even create more problems for Cade. It could possibly obstruct his airway and cause sleep apnea or he may even need another jaw surgery. So I was crying in the office like the baby that I am. Before when he has had surgery, it has been clear cut, he needs it whatever the risks. Now it's "well mom, we can leave this up to you. I will do it but there is a good chance these horrible things can happen." Awesome. Thanks for leaving it all on my shoulders. And asking the rest of the family is no help, way too many opinions there!

So this indecisive mom is getting a second opinion in May with another cranial facial surgeon. In the mean time, we still give Cade very small sips of only water approved by his speech therapist due to the "free water" rule and the fact that he hasn't had a pneumonia or breathing troubles of any kind in 4 years. Please pray that someone has a clear answer for us and there is a magical and perfect intervention for Cade so that he can drink and possibly even talk. Stay tuned for more Cade medical drama.