Caden had his first appointment with the infectious disease clinic at MUSC today. The appointment came at a good time. The nights have been long and hard for Caden recently. His secretions have increased and begun to turn colors. That almost always means he is headed for fever and/or lower oxygen saturation numbers. And that translates into a trip to the pediatrician and some rough nights for Mommy and Daddy until the bug is over come. The nights have been long as Sherry and I cannot remember the last time we got a full night’s sleep without having to get up and suction Caden. Recent weeks have required one of us to be up approximately every 2 hours.
Caden has suffered form chronic sinus infections since birth. The theory is that his lack of ability to swallow added to his sub-mucus cleft palette creates a perfect storm for sinus infections. Since Caden cannot even swallow his own secretions (spit), the secretions pool up in his throat until they begin to cover his airway. Then he coughs or blows. Since his palette does not seal off his sinus cavity from his airway the secretions are not coughed/blown out his mouth. Instead the path of least resistance out of the upper airway to the tissue is always via his nose. That means that every germ that goes into his mouth due to chewing ends up getting sampled by his nose and sinuses. The doctor in the infectious disease clinic pretty much agreed with this theory. He asked us to try a new combination of drugs. He prescribed 21 days of a new antibiotic (haven’t used it in a while) and Nasonex. He asked us to deliver the antibiotic, nose spray and Xyzal and then return to see him in a month.
The quality of life would be greatly increased by Caden learning to swallow and not have to be fed via a feeding tube. Another medical consideration would be to allow his digestive system to deal with germs that he takes in via his mouth. The feeding therapy that we have discussed before will begin new chapter next week. Caden will begin seeing a new speech/feeding therapist at MUSC. His previous MUSC therapist resigned. We are not happy to see her go, but understand her frustration with being forced to take paid time off or leave without pay when patients cancel appointments. Medicine seems to be as much about the bottom line numbers these days as delivering quality care. Anyway…The new therapist wants to challenge Caden during a MBS (Modified Barium Swallow).
While we are certainly hopeful that Caden will gain swallowing functionality we are moving forward with Caden’s tube feeding regiment. Caden has begun a new formula that contains pureed chicken and vegetables. The formula is called Compleat Pediatric and is made by Nestle. The new formula much less concentrated and requires more volume. Caden went form getting three cans (24 ounces per day) of his old formula that gave him just under 1500 calories per day to now getting five cans (40 ounces per day) of Compleat that totals about 1300 calories per day. The nutritionist we are working with from Cincinnati Children’s Hospital recommended lowering Caden’s caloric intake. She said that 22q11.2 kids have a tendency to be over weight with low muscle tone. Even at a full two years younger than his older brother Riley, Caden has frequently out-weighed Riley by a pound or so over the past year. This motivated Riley to eat his peas and carrots because he wants to ensure he retains the big brother title in every way possible. The new formula requires more volume, but does allow for the total water for hydration to be reduced. I believe the new formula contains approximately 82% water to dilute the pureed food down enough to get it through a feeding g-tube.
The rest of boys are doing great. Josiah has learned that not everyone thinks he as cute. While on a date this past weekend he told Sherry “not everybody talks to me Mommy.” he was being cute and trying to engage other shoppers in the store and not everyone was returning the greetings. Riley is doing great with school. He has picked up some fun new subjects in addition to reading, math, piano, and scripture adventures. He is learning Latin and he is learning how to type using a fun typing game on the computer. He is a very avid reader and loves to complete 1000 piece puzzles…all by himself. Levi is nearing his 1/2 birthday mark and has been on solid foods for over a month and loving it. He is rolling over and jabbering. He is a cute as can be. While a little thinner, he looks almost exactly like Riley’s 6 month pictures.
With that I want to wish you a very Happy Thanksgiving!!!