This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Tuesday, February 21, 2012

Honest Emotions

There's really not a lot to say.... Nothing new to update with Lydon. He has done well since starting on the beta blocker. He had a good weekend spending some time with my mom and his "Paw-paws". As long as he is watching movies, playing with one of our phones, reading books, or playing calmly in the house all is well but as soon as he exerts any activity the symptoms reappear. Tonight after I got home, the weather was great. Not hot, not cold, not windy so I took him out in the garage hoping he could play for a little bit. He did play but after just a few minutes he started looking dusky around his mouth and the corners of his lips were blue. I let him keep playing on his car and horse until he got short of breath and then we came inside. I heard from the ENT scheduler today and it looks like Ly's procedure is a go for the first week of April. Unless something changes, our ENT's partner is going to look at Lydon's airway and then when he is done, they will start the cardiac procedure. I am trying really hard to stay upbeat and positive but it seems harder than ever. I hate the waiting and the unknown....I hate not knowing what to expect and whether or not this is going to fix Lydon's issues. I hate not knowing if these newly diagnosed issues are even what's causing his problems or is it disease process and no amount of medicine or highly skilled surgeon in the world could fix it! I guess time will tell. We are holding on tight to the prayers of others and what strength and faith we have. Somedays it feels like there isn't any left but then we get a silly grin or a sweet smile and our empty tanks are suddenly refilled.

Saturday, February 18, 2012

Ly-Ly's Heart

I've written and re written this post several times over the last couple of weeks. It seems a little ridiculous to say that we've had a lot going on with our boy. Ever since his cold and ear infection a couple of weeks ago, he has become increasingly more symptomatic with activity. We started noticing these episodes right before our Cardiology appointment back in January. But since then, we've watched his heart rate be very irregular...up, down and all around. Additionally, he has seemed to have very little endurance and become increasingly short of breath, pale and cyanotic-(blue lips or duskyness around the mouth). Over the weekend, we took him to a near by bounce house for one of our good friends little boys birthday. We allowed him to bounce for just a minute or two and then Hollie took him down the slide. Apparently, that was more than he could handle even with oxygen. He was extremely short of breath, he was super pale, his lips were almost purple and he started gagging and vomitted. Events like this have started happening several times a day. I called the Cardiology nurse and we saw the doctor Wednesday morning. He told us his Holter Monitor results showed that he is chronically tachycardic or has a constant high heart rate. He gave us an order to start him on Propranolol which is a beta blocker. Our hope is that this new medicine will take some of the stress off of his heart so that he can enjoy a little bit more activity without having to pay for it! Finally we talked about his PFO or the hole in his heart. Because he has recently become so symptomatic, and has so many different things going on, we decided the best thing was to schedule the procedure to potentially close his PFO. We've tenatively scheduled it for the first week of April but that may change because we are trying to coordinate this with ENT since they want to look at and reassess his airway again. So far, he's done good with the new medicine and hasn't experienced any side effects. Our hope is that the procedure along with the new meds will make a big difference with his everyday excercise intolerance and endurance level. Otherwise, we are faced with the possibility of this just being disease process. Obviously, this is NOT where we want to be. Our Cardio's advice was to "not get your hopes up" or "expect too much". We should know more about a definite date for his surgery after next week. For now, we are doing our best to remain optimistic.