Another update on our little dude and upcoming surgeries.
We went in to see Silas’s ENT last Friday and had a really good visit with her. She looked at his tonsils and her reaction made us laugh a little. Apparently his tonsils are enormous, but the one on the left was “WOAH!” so dang big. We are really hoping when his epiglottis is tacked up and these pesty adenoids and tonsils come out in November that this will help with his new diagnosis of sleep apnea. She also went over these results with us and honestly, they were pretty disheartening. We’ve toughened up on the surface to news and surprises, and in all reality we know God has control and that in itself is all the comfort we need, but news is still tough to digest. And as parents, the last thing you want to hear is that there are things going wrong with your child, especially things that have been in affect for a long time and have been causing problems from the start.
His apnea is very severe. He had incidents during his sleep where he completely stopped breathing, about 60 or so. More incidents of shallow breathing where his O2 saturation dropped down in to the 60’s, which is extremely scary. He never reached REM (deep sleep) sleep until he was 6 hours in to his sleeping, and even then he only stayed in REM for about 30 minutes. That is not normal. Most people average reaching REM within the first hour after they are asleep, and stay in REM for much longer periods of time. Silas just isn’t getting adequate sleep, but overall his body must be used to it since he tolerates waking hours pretty well. His doctor explained that his body probably tries its hardest to stay out of REM because during REM was when he experienced the most severe episodes where he completely stopped breathing.
As far as his next surgery goes, we will be staying in Philadelphia for roughly 20 days. We will be there on big man’s birthday, as well as Thanksgiving, and will be missing Carson a lot. He keeps saying he wants to come with us but we know that is not an option unless we just decided to remove him from school for the year. That just doesn’t seem fair. I know he will be fine staying at home with family members and will be well taken care of, and he has voiced his excitement of getting to spend time with his Mommaw, Mimi and Aunt LarLar while we are away. We are still considering different hotel accommodations, trying to pin down the one with the most pros as far as affordability, travel and amenities for what we will need, but have reserved 3 hotels so far so that we at least have some options to bounce back and forth with before we make the final decision. Let me tell ya, Philadelphia isn’t Winston-Salem, NC! The Ronald McDonald House is never available, as it is typically only open for children with terminal illnesses which is a truth that makes me feel very sad to think about, and is fully booked almost always, so hotel lodging is really the only route we can go. The hotels inside the City are extremely expensive, and even on the outskirts of Philadelphia, you are looking at the mid-100’s per night. We’ve found a few available options right outside of the city that are also looking promising, but they are still quite expensive for the amount of time we will be staying there. The hotel we stayed at before was much more affordable in terms of lodging, but offered no kitchen or anywhere to store food, so we were eating out for each meal which made the cost of our trip way more than we had anticipated, and was also a long drive to the hospital each morning. We are still looking in to the hospital’s Host House options, which seems to be a really great program where certain staff of the hospital open their homes up for guests who are in the area for a while at a low cost. I thought that was a pretty wonderful thing to hear that they do, especially with how often I imagine their help is needed!
We’ve set a date for Silas’s heart surgery in St. Louis, and that will be January 4th. We will head out of town the morning of the 2nd and will hopefully be able to take Carson with us on this trip. This surgery is going to be (hopefully) a shorter stay than the trips we are taking to Philadelphia, as the heart tissue seems to heal much faster than airway tissue. The only reason we are doing the heart surgery before the airway surgery is because of the turnaround time that will be available for Silas’s airway surgery to happen in the months ahead. If we had scheduled his cleft (airway) repair before the heart surgery, we were told that the cardiac surgeon would not be able to perform his heart surgery until 6 months following the airway surgery. If we do the heart surgery first, then we should be cleared for his airway surgery within 6 weeks. That way we can get these issues all out of the way since they are hindering Silas from furthering his development, which he really, really wants to be doing right now as an almost-3-year old. We have already booked our reservation for our trip to St. Louis and will be staying at the Haven House, which is a non-profit home very similar to The Ronald McDonald House, just outside of the city of St. Louis. We will be there for roughly 7-10 days following Silas’s surgery, and the rate here was much more affordable than the places we have booked in Philadelphia which was a huge relief. The Haven House also provides two meals a day to its guests, offers really wonderful amenities such as game rooms and crafts rooms, which will be really great for Carson, as well as family rooms. They offer laundry facilities onsite for free and have shuttles that come and go from the hospital each day. It feels comforting to know that this place is going to be available to us, as our time spent in the Ronald McDonald House during Silas’s first year was such a huge weight off of our shoulders.
I have been asked by some why we have chosen to go out of state for Silas’s surgeries, and why we are not sticking around home to have these surgeries done locally. I think that is a pretty valid question, and trust me, I wish we could stay home in the comfort of our friends and family while Silas undergoes these surgeries and save on the expense that these trips will cost. We were not expecting to be going out of state at all, but received the news that this was our only real option this past February. Our ENT who was going to be performing this cleft surgery had to leave the hospital and therefore could not operate this past spring like we had hoped. Laryngeal cleft repairs are not common, and our local hospital doesn’t do these routinely. As a team, we all decided Silas would be better off being somewhere where this surgery is done routinely, by an advanced and specialized pediatric airway disorder center, like the renowned one of The Children’s Hospital of Philadelphia. His doctor told me a few months ago something that has stuck with me, and has helped me as a parent justify why I search and dig so much for things with my child, and why in the end I can see the benefit of all the strange questions I’ve asked, and all the things I’ve requested that aren’t typically requested. She said something to me that helped me understand why we advocate for him in the way that we do. She called Silas a “zebra.” That doesn’t mean much to anyone that doesn’t know this, because I didn’t know it until I looked it up, but a “zebra” in medical terms is a very rare, and not often thought of diagnosis. The phrase “when you hear hoofbeats, think horses, not zebras,” was coined in the 1950’s by a doctor who was trying to emphasize that when diagnosing a patient, one shouldn’t search for the exotic or rare answer, but that they should look for the simple answer to things, the common diagnosis, therefore “when you hear hoofbeats, think horses.” His doctor said that Silas is a Zebra (a pink and green one), and I see that now. In every way we turn, he has had a new and rare problem pop up. It has not benefited us much to stay inside the box, and as much as the local hospital to us has helped us along the way, Ryan and I have had to do a very large chunk of digging on our own to try and better understand our child. His heart issues are not common, and are in fact very rare, therefore we are choosing to send him somewhere where this surgery is not considered out of the question because of how much of a risk it is, and allowing a doctor who has performed it over and over and has a track record of success under his belt to operate on our sweet child. So as much as I give credit to our wonderful local children’s hospital for all they have done to get us to this point, healthy and happy, we are choosing to take Silas to places where we can feel comfort that he is in the best hands he can possibly be in with surgeons that have witnessed and fixed problems like his several times before.
Thank you to our special doctor for that special aphorism that will always stick with me and make me laugh when I think of it. I am still trying to get “Zebra” added to his medical chart. 🙂
Wish us luck and send prayers our way for his appointment tomorrow with Endocrinology. We will find out about his growth progress and talk more about growth hormone therapy.