So the risk of sharing our good days and bad days is that there are both. Yesterday wasn't as optimistic as the other days were, but we remain confident in our care in St. Louis and feel like we're being handled by the best. As I was flying back to Phoenix to leave Robin, Ethan, and my other boys (which is hard enough), the news I got before I left wasn't the greatest.
First of all, please pray for Ethan, because in a matter of an hour or so he will be getting a spinal tap to test his spinal fluids. He has to go under general anesthesia for this as well, so we pray that all will be well.
Also, Ethan's red blood cell count is steadily dropping. The "steadiness" of the drop I think is what is of greatest concern, and the word transfusion came up. We're not to that point yet, but that's a scary word to us, and it will be required if the trend continues.
The good news is that he continues to eat food, albeit in very small amounts. They did a barium motility test to watch his stomach digestion, and essentially his stomach is not digesting very much. It digests so slowly that it wasn't observable in the test. This tells us that though he is no longer aspirating on his food, he also isn't digesting correctly, so if we were to go to feeding three times per day by mouth, it would come back out. It is a reminder that we have big, complicated and serious issues we're dealing with. Like the neurologist told us, there's a long list of possible issues, with the rarest being ranked at the top right now.
When we first arrived in St. Louis, it felt like we would be there a week -- heck, Day 1 and he was eating! But the reality that there is a larger issue is starting to settle in for us, and the doctors are hard at work trying to figure out what it is.
His intestinal line (J-tube) has become displaced (again), and is all coiled up in his intestines. This time it's so wrapped up that Interventional Radiology can't fix it (the easy way!). They are going to get through the spinal tap and some more feeding to determine what to do, which will either be a complete replacement with a stomach "button" or an endoscopy to fix the existing line. Either way, another bummer (and general anesthesia) for Ethan!
We are trying to balance our worries and what we have thought to be true from the care in Phoenix with the different approach of the doctors in St. Louis. We are trying to remain Ethan's number 1 advocate while at the same time not intervening in the doctoring process. It's a delicate balance for sure.
Thank you all, and keep praying. . . . .