I’ve had a bunch of messages from friends and family asking about Silas since we’ve been home and realize I probably left some of you hanging since we got back from Philadelphia.
For the most part, Silas is doing great! Before leaving the hospital, we managed to figure out a more strict but doable schedule for his tube feedings since he is no longer allowed to have anything at all by mouth. He had some trouble adjusting once we got home for about the first week and a half, and we are still navigating what works best for his stomach. He has a really small stomach so it’s not easy to get him the calories he needs the same way I would if Carson were sitting down for a meal at that age. We have to give him really small amounts of food and water every hour of the day through his tube. Because of his stomach’s volume intolerance, he has to be given “nighttime feeds” through his pump to get all the calories he needs and it has been really hard for him to keep his formula down. He is on some new medications for his digestion as well as higher reflux medications to help him out and so far things seem to be working and he is able to rest at night without throwing it all up.
He is back at it full speed. The PT from CHOP thought we would need to enroll him in to a rehab facility when we got home because of how weak he was from being bed ridden for nearly 3 weeks. We knew a little time with Carson in his atmosphere at home, some help with his home therapies and all the many things we would be up and about doing once we got back would get him back in to shape and we were right. He hasn’t slowed down.
The first week or so of not being able to eat anything by mouth was a lot easier to handle than I had thought. But I somehow knew the turning point would come, because I can only imagine if you have gone so long tasting food and then no longer are, you start to notice the changes at some point. Food and the concept of eating for him has been a real sensitive area lately, and we have had to really avoid showing him anything we eat, as well as allowing him to freely hang around in the kitchen. Visiting family or friends can be hard because food is such a big focal point of get-togethers, so we have been trying our best to take turns keeping Silas entertained somewhere other than near food and where everyone’s eating, but he is smart enough to know what is going on most of the time. He often signs for some of the foods he used to eat, like peanut butter and yogurt, and lately rather than completely avoiding his requests, I’ve tried to explain that he can’t swallow it, that it would hurt him. He doesn’t like that so much and it usually leads to a giant melt down that makes me feel terrible. But what would make me feel more terrible is knowing I’m giving him something that is hurting him, so I just have to try and brave through the torture I know he is experiencing now, to keep him from harm. Hopefully it will pass and we can figure out a way to not have food be so sensitive but it’s still so early.
I’ve had a lot of questions about when Silas will be able to eat again. It is one of those things that I don’t think anyone, even his doctors have an answer to. As far as right now, he is very strictly ordered by his doctor to be NPO until at least post-surgeries – which means “no food by mouth.” Once his cleft has been completely fixed, which we have come to find is going to be a lot more difficult to do than we had thought, then he will need to have a successful swallow study to show he is no longer aspirating before he can be cleared to have anything by mouth again. With this surgery and the type of cleft Silas has, I was told there is a 50/50 chance that children with this type of airway defect will be able to swallow safely post-repair. He has many things that he is up against as far as this issue, as well as his esophagus not having much motility or muscle movement. But as far as I know, he is one determined little guy who when given a challenge, seems to smile in the face of it. I can’t see a whole lot out there that he wants and won’t be able to do. He inspires me in that way.
Many people have asked why he can’t have anything to eat if he was doing fine with eating before surgery. Somehow Silas’ lungs and airway, based on the last year of X-rays and scopes, have been constantly receiving fluids but he has remained mostly healthy. His doctor was unsure how that could be with how badly exposed he was to things that should have otherwise made him very ill all of the time. His baseline for his lungs and airway are not healthy looking by any means but he has managed to get through it, all while fooling us in to thinking he was clearing all food in the right direction. To continue giving him food while knowing the state his lungs and airway have been in would be extremely neglectful of us towards his health and wellness, despite the appearance of his health on the outside. His doctor said that he either has already developed a chronic lung disease because of this or that he will in the future from all the exposure he has had to fluid and whatever else has been sitting in his lungs over all this time.
His next cleft repair and scopes will be October 5th back in Philadelphia. We were just given the date a few days ago and are just waiting for a confirmation as we’ve learned in the past that things can move around and change in no time. We will go up for a scheduled bronchoscopy with the hopes that what part of the repair that remained intact a few weeks ago is still intact in October. As long as that lower portion of his cleft is still together, his surgeon will proceed with the repair. If all goes well and as planned in October, we will go back up towards the end of December or early January for the final part of the repair.
Please pray for Silas and for the surgery he is heading in to in a few months. Pray he is able to have surgery and that what did not come undone from the last procedure to still be held together when he is evaluated in a few months. Also pray for his team and those following him. He has many people there who have come to know him very well, care about him and understand him. We are truly grateful to his doctor here at home who sent us somewhere that he is well taken care of.
Thank you all for reading and taking the time to learn more about Silas’ journey.