Status Quo

There was a time, not so long ago, that maintaining a certain level of healthiness would have made me happy. But now, as we emerge from the flu and virus season victorious, I ask, what's next? As in what can we do next? When can he start eating? When can he stop taking so many meds? What testing should we look into? What's the next step with his speech and language therapy? Obviously there are a lot of questions...

So I try. I try to talk to the Neurologist about testing. I try to get Pulmonary's recommendation on advancing his feeds. I try to get GI's input regarding food allergies. I try to get his Swallow Specialist to weigh in regarding his aspiration or lack there of. And I try to get them all to talk to each other, since at most visits it ends with a "Let's see what _______ (fill in any specialist) has to say."

This my friends is not an easy task. First, and foremost, just getting in touch with one doctor is darn near impossible. Multiple phone calls and messages are required. Then when you do actually speak to one, the conversation is usually rushed and ends with the above mentioned phrase. Oy vey! So getting multiple physicians to communicate with each other is like requesting an audience with the Pope. In fact I think my odds are actually better with the Pope.

And some may ask, why so urgent? Well, since we are clear of the flu and virus season, NOW is the time to try advancing Jackson's feedings, move to more solid foods, and away from tube feeding. The clock is ticking. We have exactly 4 1/2 months to accomplish this before the next flu and virus season and that's if we start TODAY. So let's take two weeks out of the equation which leaves us with 4 months. That's not much time since it seems there is yet more testing to performed before anyone recommends solid foods.

So while status quo was an acceptable and even welcomed level during the nasty winter months, it now quite frankly has me a bit wound up in sixes and sevens.