Tracheotomy will be early next week - July 8

We had a meeting with one of Wyatt’s doctors yesterday to review his current status and discuss his continuous treatment plan. To sum it all up, it is confirmed that Wyatt had a stroke shortly before or during birth which caused his brain damage on the right side and the rear of his brain. The effects of this injury are speculative at this point and can range from full recovery by means of his brain remapping itself to cerebral pulsy. All we can do is look at milestones as he gets older to see if he is meeting them in the expected time frame and if not, to intervene and give him the best possible chance to develop to his full potential. At this point it is unclear why he continues to have breathing problems to the degree of being depended on the ventilator, were as just a few weeks ago he was able to only be on the nasal canola with minimal supportive oxygen. His current ventilator setting is on auto-mode, meaning the ventilator supports him when needed at a rate of 30 breaths per minute but he can initiate breaths and breath over the ventilator. He does not require any additional oxygen at this time so he is breathing room air which has an oxygen concentration of 21%. That indicates that the oxygen itself is not the problem. He has been able to increase his breathing rate to about 50 breaths per minute on average while awake. However, he is having increased problems while tired and asleep to the point where he is riding the ventilator, meaning he is not initiating any breaths and the ventilator has to do all the work for him. The pulmonologist was consulted and Wyatt’s symptoms are pointing toward a rare genetic disorder called Congenital Central Hypoventilation Syndrome (CCHS). Blood work has been sent out to test for this disorder but results will take about two weeks to come back since there are only two labs in the US that can process CCHS genetic tests. If Wyatt does test positive, it would mean that he will remain depended on the ventilator and there is no cure. There have been some medical advances over the last few years that look promising and children with CCHS tend to improve as they get older, sometimes even to the point where they only need the ventilator at night. In Wyatt’s case however, we’re not sure what it will mean because CCHS normally presents with normal MRI results. Wyatt has the additional challenge of the brain injury so there won’t be definite answers for his prognosis. Needless to say, we’re hoping the test comes back negative… In all honesty, his symptoms fit the profile. I’m hoping it’s “just” brain related but my instinct is telling me otherwise. All along I had this nagging feeling that he won’t come off the ventilator. I can’t explain it, it’s just a feeling I have that won’t go away. I’ve been called pessimistic by a couple people but I like to think that I’d have the best instincts when it comes to the bond to my own child. I’m a realistic person and with all the ups and downs, for Wyatt’s sake, I cannot afford to be blind-sided and be in denial. I have to be as prepared as possible to make the best possible decisions for him. Right now that means, no matter what the outcome of the genetic testing, Wyatt needs a tracheotomy and a GI tube. He extubated himself last night again and they had to reintubate. He’s 5 weeks old today and the only way to keep a 5 week old full term baby lying still all day to prevent him for continuously extubating himself is by keeping him sedated. No matter how much we tried to avoid having to make this decision, it’s in Wyatt’s best interest. Having a breathing tube in his throat is like breathing through a straw. Aside from knowing he’s very uncomfortable, watching him gag on the tube over and over again is the hardest thing to watch. With a tracheotomy, he’ll be a lot less irritated, can breathe easier and move more freely. I did have a chance to see a couple other babies in the NICU with a trach and it’s a night and day difference. They are so much more comfortable and so much happier. They actually seem used to it as if it was any other part of their body. And if Wyatt does not have CCHS and improves over time where he doesn’t need the ventilator anymore, then the tracheotomy can be reversed. Whether or not he’ll be able to fully or partially bottle-feed once the trach is in place is yet to be seen. That’s why they’re going ahead and placing the G-tube (a feeding tube directly inserted to his stomach) at the same time of the tracheotomy surgery. The chance of him needing it at least partially is high so we didn’t want to put him through a second surgery a week later. Instead, they’ll just get it done at the same time so he only has to be under anesthesia and pain medication once. If he ends up not needing it anymore down the road, it’s an easy removal that does not require additional surgery. An upper GI and a follow-up Echocardiogram are being done today and then the Tracheotomy and G-tube surgery should be scheduled for early next week.

The things we take for granted in life. A smile, a cry, a touch… breathing. We even take life itself for granted. It’s true that Wyatt is having a rough start to his life. He certainly is not out of the woods by any means and we never know what hurdles we will face one day to the next, sometimes even each hour. But amazingly enough, every person who has met him has been affected by his strength and his will to live. He is teaching us so many lessons, many of which we are not even aware of yet. One thing is for sure, whatever his challenges ahead, he is and will continue to do great things in his life. And who knows, maybe his story will have a profound impact on someone else. Something good has to come of this.