"Interesting" is not what you usually want to hear when medical professionals are talking about your child's case but it seems like that is what we often hear when talking about Carson. From the beginning, nothing has been 'by the book.' But I guess this just adds to the miracle of Carson and his amazing story!
Thank you all for the prayers....Preston, Carson, and I had another smooth trip to and from STL. Once again, the day was longer than expected but Dr. Costa, his ENT, spent close to an hour with us, discussing Carson's case. We started with the swallow study and like I said, the results were "interesting" in the Speech Pathologist's words. The good news is that there is still no concern about aspiration, meaning no food or liquid penetrates the airway! The interesting part was that the liquid just slowly trickles down the back of his throat, eventually triggering a swallow but then when the food enters the esophagus (tube leading to the stomach) it doesn't clear out completely into the stomach, it 'refluxes' back and forth in the esophagus until he swallows again and then the next portion of food does the same thing. On top of that, he does not swallow as frequently as he should. There is also a definite sensory component to his aversion to feeding. The speech therapist recommended following up with gastroenterology to see if they felt a need to take a closer look at the function and motility of the esophagus but also continue to attempt feeding and desensitizing his mouth. What continues to puzzle me is that he USED to take a bottle and USED to take more cereal by mouth... So we will just continue to persevere and follow up with gastroenterology at some point.
Then we went to see Dr. Costa and had a long talk with him. In the end, it was decided to check into getting a second opinion at Cincinnati Children's. They are THE leading experts in airway reconstruction and airway problems. We will have to check into it because Dr. Costa said many insurances will not cover it and thus leaves it to our own resources. I plan to call today or next week to get some more information. Dr. Costa felt confident in his plan but also said "A second opinion never hurts and they (Cincinnati) are the experts...they may have ideas that I have not thought of." But in the interim, we have scheduled a surgery (October 10th) with Dr. Costa, improving Carson's safety is the main goal. At this point, Carson is trach dependent, meaning that IF his trach came out and we were not able to get another one in...he would get into trouble very quickly. Dr. Costa's goal with this surgery is to remove some of the scar tissue in his airway, hoping to open up his airway. We will most likely need to stay the night for observation after the surgery. We did briefly touch on Dr. Costa's mention of Carson needing his trach permanently and although Dr. Costa is still concerned, he said it is still way too early and Carson is too young to make that call.
Carson did SO well today...his schedule is usually out of whack, with less sleep, on days we go to St. Louis but he was all smiles the majority of the day! Part of what's so amazing about Carson and children in general is their ability to overcome the impossible and to do it with such a happy demeanor! While we were talking to Dr. Costa, Carson was just rolling around, climbing in my arms, smiling, and babbling! A person can't help but smile when they see him!! I bundle of joy all wrapped up in a cute little boy!
Thanks again for all the prayers and please keep them coming as we follow up with more doctors and for direction in our decision making process! Much love to all!
Sorry, not many pictures this time...our camera decided to 'kill' the SD card : (
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| Before a walk with Mimi, Papa, Nana, and Sarah (Mom and Dad went to eat) |
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| Gaining life's wisdom from Nana |
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