Wednesday, September 9, 2015

The Heart Speaks

It was a BIG day today. The day we've all been waiting so (sometimes) patiently for; the meeting with the cardiologist. Recap: Jacob's had a history of tachycardia (fast heart rate) and has become increasingly dizzy, having heart palpitations and feeling faint. He had a hypertensive episode in June, which revealed that he was having prolonged QT waves of his heart, which isn't good. We've been waiting to find out answers since then, and everything else to do with his health has been pending this appointment.

Jacob and I both LOVED this doctor. Amazingly patient with us as we told our long and complicated story, she took the time to answer our questions and was completely willing to accommodate what we were asking of her, which seemed like a lot! After listening to our medical events, looking at his old ECGs and Echocardiograms she isn't sure what to really make of it without further testing. He has had a few abnormal ECGs in the past, but he's also had a couple of normal ones. So unfortunately, it's not a clear cut definitive case of Long QT Syndrome. She noted that he's on a couple of the meds that can prolong QT, but she is hesitant to change them based upon their value to Jacob's functioning. She is questioning whether some of the symptoms and heart changes can be associated with electrolyte imbalances and low potassium. Given that Jacob still has a very limited number of calories going into him daily, we're waiting on the GI doctor to fix this issue, Jacob might be on the malnourished side, especially if his Crohns is not under control. Given the amount of fluid loss for Jacob daily, he's going to need to be connected constantly to his feeding tube when not at school to replace his fluids. From this you can see how connected everything is, and how quickly treatment becomes so complex in a situation like this. For Crohns patients with an ostomy, it's so difficult to stay hydrated, especially if you have issues with overheating and sweating. Then because of that, the rest of the body starts to have complications pop up.

The BEST news of the day? She is going to call the electrophysiologist at Sick Kids to see if we can be seen any sooner!

Jacob's health has been on a steady decline over the past few weeks. Hopefully now that he has been cleared by cardio for surgery, we can start moving forward in attempts to get the Crohns under better control. He's really struggling with a lot more nausea, vomiting and acid reflux, but the fatigue is just weighing him right down.

Jacob is hoping that he'll be able to start school next week. He's really looking forward to being around other kids his age again. He was ready to go this week, but the school needs to put a medical safety plan in place before he can attend and wanted to have a letter from the cardiologist to declare him well enough to attend. Thankfully the cardiologist agreed to do this for us :)

Jacob also hopes to be able to get the strength and energy to record his next YouTube vlog soon, and get back to working on his dream of Jacob's Healing Rooms.  Thanks everyone for supporting us through all this, and please continue to share Jacob's wish to help other sick children; Jacob's Healing Rooms.

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