yesterday was a long day at the helen devos hood. these appointments typically last about 2 – 3 hours not to mention getting there, checking in and of course getting coffee. I swear that starbucks in the hospital has to be the busiest one ever.
we got to the appointment early in an attempt to feed otto before his echo/ultrasound so he would sit still. he wasn’t interested. at all. so we got coffee instead and tried to just remain calm and level headed before the appointment.
we went in for the echo around 12:30 and otto laid perfectly still. he was awake for about half of it and seriously just laid there looking at the monitor. it was seriously kind of the sweetest thing. he then kind of just drifted off to sleep and we were able to get the ultrasound finished perfectly. basically what the echo is is an ultrasound of the heart. the tech looks at the heart, valves everything in depth and then the cardiologist makes sense of it all.
after the echo we had the nurse do the ekg right in the same room because he just didn’t move. and again sat perfectly still so we were able to get everything we needed. the ekg looks so funny and he only has this stuff on for a split second but i think it kind of makes him look like a transformer haha.
after we had all of the tests and pictures we needed we waited to meet with our cardiologist. we had his weight and height taken (22 3/4 inches and 9lbs 7oz!) and then we waited. and i think otto knew we needed to relax because the kid kept letting out the nastiest loudest farts in that quiet little room that you couldn’t help but bust out laughing. i mean these farts are totally rank. how the heck does a baby have THAT BAD of farts?! at least when he’s around i can blame mine on him.
our doctor came in and we talked about what we saw today. otto had a lot of good things going for him. his weight gain is very promising. he has gone from 7lbs 14 ounces to 9lbs 7 ounces in 3 weeks which is a great gain. his leaky valve has not changed, not better sadly but also not worse. the other promising thing about the leaky valve is that it does not seem to be having an impact on his heart. the doctor explained to us that typically it puts a lot of stress on the heart and causes the heart to enlarge and he doesn’t appear to be having that which is awesome. the main effect this leaky valve seems to be having on otto is it causes very heavy breathing due to fluid on the lungs which is a reason for his poor feeding, lack of energy and reflux issues.
we have been treating him medically with all sorts of meds but when we increase the meds it has a negative impact on his kidneys so we are continuing to monitor the balance there with otto.
because otto’s breathing is not getting any better and we are kind of stuck with our medication dosage our doctor is going to present otto’s case today. all the cardiologist and surgical team meet together and present their patients cases and see if they are ready for surgery/ have other ideas. so otto’s is being presented today. this is the first time we’ve even had the faintest idea of a concrete deadline. we’ve been told the bigger he is the better opportunity we have for a one and done surgery so we are hoping to push it off a bit more but at least get an idea of when it will be.
our doctor is very confident that we can fix the avsd (hole) in one shot but it is the valve that would cause the most trouble. this valve might require multiple repairs and if they cannot repair it it will require a valve replacement which means a few more surgeries throughout otto’s life to keep updating the size of the valve replacement. the replacement would be our worst case scenario. we couldn’t really get an idea of what we are looking at until the surgeon is able to see it for himself.
so now we wait for a phone call from our doctor hopefully thursday morning to let us know where we are at. say a prayer that they find the best solution for our sweet otto. thank you everyone for the prayers and encouragement yesterday. on to the next steps!