Super quick update.
I spoke with Eli's primary at length this morning.
1st. Thrush/Yeast. Nothing is working. We have been battling this for over 2 months. Right now his doc is stopping the latest meds for it and wants to see if it will come back full force or if it will not. If it does he's out of ideas and will be turning it over to infectious disease for help.
2nd. Heart. He has spoken with Eli's primary cardiologist. Babies are born with a fast HR and then as you get older it slows down to a normal pace. For some reason Eli's heart didn't get that memo. Long term tachycardia could be causing the SVT's and abnormal rhythms. They are hoping to get good info from all of these readings from the heart monitor. They are wondering if using beta-blockers would potentially help lower his heart rate, possibly stopping or atleast slowing down the occurances of these SVT's. He gave us more details on what he wants done when it occurs and at what point we are supposed to head to the hospital for emergency meds to make it stop.
3rd. Hydration. Eli is just not getting enough fluids. No matter how much we increase it just doesn't quite seem to ever be enough. His doc is hoping maybe he simply needs more fluids every day instead of trying to play catch up. He's dramatically increased his fluids to try and keep up with his needs. Hoping this doesn't put to much stress on the heart and kidneys but he simply needs more fluids.
4th. Poop. He wanted to know how the metamucil was going and I gave him all the details. It is definitely looking like we might not be on the right track still but we all agree to stay the course until atleast Monday.
It's been kind of a crappy day. Eli's fridge broke on the same day that they again increased his IV fluids. He gets 4 different bags of fluids a day, formula, and tons of medications and syringes and such that all require refrigeration. This is obviously a big issue that we are attempting to find a solution for.
We will all regroup and check back in on Monday. We will also be running a whole group of labs then as well. Like always we will update as we know more.