July 30, 2011
It’s been a busy last couple of days. I can’t go into much detail right now because we have to leave soon to attend a NICU sibling support group… In short, Wyatt is improving and the antibiotics seem to be working to fight off the two types of bacteria in his trach. Last Thursday we received the news that the genetic testing results were in and Wyatt does in fact have Congenital Central Hypoventilation Syndrome (CCHS). This website is the best we have found so far and I already joined their network and contacted the specialist listed: http://www.cchsnetwork.org/. In very simple terms, CCHS means that there is a mutation in one of Wyatt’s genes that causes his body to not be able to recognize or respond to an increase in carbon dioxide in his blood, especially during tired or asleep periods. Therefore, he is unable to learn to improve his breathing and will require continuous mechanical ventilation. However, the prognosis is good in that most children with CCHS are able to eventually come off the ventilator at least partially while awake. There are medical advances such as diaphragm pacing that we are looking into. Most of these procedures are performed later in life though. Our biggest obstacle right now is to find cases similar to Wyatt’s. He is not the “typical” CCHS case because normally this disorder presents with normal MRI results. He has the added challenge of having an abnormal MRI and therefore it is impossible to predict what his long-term prognosis is. From a developmental standpoint, Wyatt so far is on track with movements and tracing. So that’s great news and the doctor said that based on his muscle tone and movements, he may not be at as high of a risk as originally predicted for Cerebral Pulsy. How CCHS, the abnormal MRI and their respective possible complications come together, that’s what we’re trying to research now? Only then can we move forward with indentifying what medical advances may apply to his particular case. We’re hoping that Wyatt eventually qualifies for diaphragm pacing which would be done in Chicago, IL at Children’s Memorial Hospital… Needless to say, with the remodeling of the house, the preparation to transition Wyatt to a home ventilator and then actually bringing him home (hopefully around Labor Day if everything runs smoothly), and doing all the research and contacting CCHS specialists, there is not a lazy moment in our house right now.