03/15/10 Monday Updates

After a long and somewhat stressful weekend we finally have some good news to share. Eli is still doing well. He had another swallow study this morning and while his swallowing is still a little delayed he didn't aspirate and he seems capable of bottle feeding. The occupational therapist wants us to take things slow. We're going to start off feeding Eli 15CC's via bottle for the first time today and we can work that up to 30CC's over the next week or so if he continues to do well.

Eli's CO2 and bicarbonate were also down this morning as a result of him being on the CPAP more last night. At Rounds this morning we finally decided it was time to eliminate the high flow portion of Eli's respiratory support. We had long suspected that high flow wasn't working for Eli and now we don't have to worry about it anymore.

Finally, the last piece of good news on Eli is we got the test results back from the PHOX2B gene sequence they sent off. Eli's test came back negative so he doesn't have the genetic marker for Ondine's Curse or Congenital Central Hypoventilation Syndrome (CCHS) for those desiring a more medical vernacular. Never heard of Ondine's Curse?

[Its name is a reference to the myth of Ondine, a water nymph who had an unfaithful mortal lover. He swore to her that his "every waking breath would be a testimony of [his] love", and upon witnessing his adultery, she cursed that if he should fall asleep, he would forget to breathe. Eventually, he fell asleep from sheer exhaustion, and his breathing stopped.]

There is still some speculation that Eli has the disorder because many of his clinical symptoms fit with CCHS although he doesn't seem to have any problems maintaining his breathing when he is awake and alert. Only time will tell if his sleep apnea will improve.

The news we've received from Michelle and Fred about little baby Drew Michael Morganthaler has been generally positive too. Drew was born breach and the umbilical cord wrapped around his body and presented with an initial apgar score of 3. They immediately resuscitated him and rushed him up to the NICU where they gave him O2 and IV fluids. Word this evening is Drew Michael is off the oxygen and breathing just fine and seems to be doing much better. Once we have a full update we'll let everyone know but the general consensus out of Montana is he will pull through and be just fine.