Wednesday 10/22

We're working very hard to stay positive today, and you've been a huge help. There's no possible way that we can return all the supportive messages we've received - via email, phone, mail, in person or even just telepathically. Thank you, thank you, thank you. It means a tremendous amount.

Today was tough. Jenn and I spent a good chunk of the day at the NICU. The good news is that Lewis was about the same. Very cuddly and alert, but still having trouble handling his saliva, mucus and milk - not swallowing. In our meetings with the doctors today, we learned that the plateau of Lewis' progress over the last couple of days is, in fact, a big cause for concern. They believe the inability to swallow is indicative of weak brainstem function. They do not believe that progress in learning to swallow is being inhibited by his meds or the nasal cannula. We were told that Lewis' impairment is likely to be significant (though they've no idea what form it may take), and that he is not close to coming home from the hospital at this point.

Respiratory - pretty much unchanged, still on a nasal cannula at 3 l/h. It looks like Sunday night's infection symptoms were caused by some fluid aspirated into the lungs, x-rays continue to show that things on the right side are a little hazy. Tests showed Strep B and Staph in the sputum cultures, but everything else was negative. Antibiotics were changed to treat these bacteria.

Feeding - continuous feeds had to be turned down (to 10 ml/h) last night because Lewis was continuing to have reflux. Feeds were back up today (15 ml/h) , and Lewis was tolerating them okay. He's now on Reglan, in addition to Zantac. The reflux is a real concern at this point. If it does not respond to these medicinal treatments, they will consider a surgical repair called a Nissen fundoplication. Either way, he'll eat through a tube until he learns to suck and swallow effectively, but we're told that some kids do go home while still being tube fed.

Neuro - last night's MRI was a no-go, Lewis was wide awake and wiggly at 3AM (Jenn points out that he's sharing the room with a dozen nurses, so cut him some slack). Tonight, he'll be sedated and intubated (put on a ventilator) for an MRI. If we understand it right, the results may tell us if there is significant damage to any part of his brain. An "all clear" MRI is a better sign, but doesn't mean we're out of the woods. More on that tomorrow, I guess.

Thanks again for all your support. We wish we could get back to everyone individually, but in the interim, please know that we're hanging in there, and we really appreciate your support.