good news... and bad news

August 1, 2011

Damn it! Why do good news always have to be followed by bad news? It’s so exhausting… When I went to visit Wyatt this morning I apparently came at the right time to talk to almost everyone involved in his case. The OT (Occupation Therapist) was there and was working with him to try sucking on the pacifier which she dunked into some breast milk for added motivation. She said Wyatt chews on the pacifier and moves his tongue forward and backward but he does not suck on it yet. Hopefully with practice he’ll get used to it again. The risk of him aspirating is too high right now though to let him try bottle-feeding. Once he shows improvements in his sucking abilities then maybe we can give small feeds a try. However, if it is a coordination issue because of his brain injury, then we may have to skip the bottle altogether and go straight to the cup when he gets older. The feeding issue is one of those many things that we have to wait and see how he improves over time… I also got to talk to his Neonatologist. Long story short without too much medical talk, the earlier diagnosis of a stroke as Wyatt’s initial problem is now ruled out. The findings of the second MRI and Wyatt’s positive development since then do not support that initial diagnosis. There is definitely evidence of brain damage caused by low oxygenation at some point in time, but there is no way of telling when or why it happened. However, the brain damage that could be seen in the second MRI is not as significant as originally thought. Therefore, Wyatt’s risk of developing Cerebral Palsy or any other developmental challenges is most likely lower than original predicted as well. So that’s all great news!... After talking to the Neonatologist, I was also able to talk to the Pulmonologist who has taken over Wyatt’s respiratory care from this point forward. The Pulmonologist went ahead and ordered the home ventilator which will take a minimum of 10 days to arrive at the hospital. Upon arrival, they have to find the best settings for Wyatt on that specific ventilator and make sure that it is the optimal treatment for him. At that time we will then also be trained (in preparation for home care) to use the home ventilator and make necessary adjustments on our own. The Pulmonologist reassured me though that Wyatt will not be discharged until we are comfortable handling all his equipment and care. Once discharged, Wyatt will have monthly appointments with the Pulmonologist and he will need monthly vaccinations against RSV because he is at high risk for respiratory infections and lung disease. The Pulmonologist will be consulting with CCHS Specialists on an as needed basis. The biggest challenges we are facing is what I predicted earlier. There have not been any cases like Wyatt’s. Normally CCHS presents with normal MRI results. Since Wyatt not only has CCHS but also brain damage, his long-term prognosis and treatments are more depended on what the consequences of his brain injury are and how/if they affect his respiratory problems. In other words, we’re back to the phrase that I hate by now “It’ll take time”. But at least the home ventilator is ordered and we are one step closer to discharge… Or so I thought until I received a phone call a couple hours later. From the beginning, the nurses/doctors have had problems placing and keeping IV lines in Wyatt. So his last antibiotic treatments for the two types of bacteria in his trach had to be cut short to 4 days. We were down to the last resort of placing a central line to continue the antibiotic treatments but our Neonatologist didn’t want to jump the gun and decided to do a repeat culture first in the hopes that the 4 days of antibiotics Wyatt did receive were enough. Well, the culture just came back and the bacteria is still present along with white blood cells which is the greater concern. Wyatt will need at least 10 days of antibiotics and the only way to give him those treatments for that long of a time frame is by placing a central line, a surgical procedure… I’m ready to pull my hair out. A central line is our only option but it comes with its own risks such as blood infection. I’m not sure how much more I can handle mentally. With another invasive procedure in mind, I can’t even be happy about the news that his brain damage was not caused by a stroke and is therefore not as extensive as originally believed. I wanted to really enjoy those news for a moment but no, it had to be followed by more complications. Is this ever going to end? The studies say that the first 2 years of life with CCHS are the most challenging. If this is what the next 2 years are going to be like then I’m going to need a psychiatrist who can subscribe me some amazing drugs to cope. As if we don’t already have enough medical expenses. I can’t turn into a mental case now, too. I’m so scared that we are going to reach a point where Wyatt’s little body simply can’t handle all these treatments and interventions anymore. As it is, children with CCHS take a lot longer to recover from anything, even minor things. For every day Wyatt is in the hospital, I’m aging by a whole year. By the time he finally comes home, I’ll be 100 years old it feels like. With the central line being placed either tonight or tomorrow, we have to prepare ourselves for a rough couple of days.