02/26/10 Care Conference

Today is a day for answers. We have our care conference today. We are hoping to walk away from today's meeting with some answers about Eli's sleep apnea, Eli's overall diagnosis, and a plan to bring Eli home.

Our meeting starts at 3:00pm. In attendance we have a representative from neurology, pulmonary, genetics, home care services, and occupational therapy. Additionally, the senior resident from the floor and the attending pediatrician from the floor are also in attendance. In total we have 7 medical professionals, Patricia, and me. It dawns on briefly how expensive this little conference is going to be. Kind of like watching your water meter spin when all the faucets are turned on in your house. Let's get this things started so we can turn off the water!

We start with an update from the sleep study. It went well but there isn't any fantastic news. Still no seizure activity but Eli is still having apnea. On the nasal cannula with regular oxygen Eli is having less episodes of apnea than before but we're talking 50 instead of 70. The pulmonologist explains that 50 is definitely better than 70 but it's still a lot more than 10. Basically Eli went from having severe apnea to having severe apnea. His number fluctuated a little but the underlying problem is still there. What we found to be surprising is Eli actually did better when he was on the regular oxygen and he did worse when he was on the high flow. They said something about the high flow disrupting Eli's breathing patterns. I'm not sure we fully understand what the sleep study is telling us and the doctors don't think it's all that meaningful. He still has the apnea and it's not going away for the time being. They are going to switch Eli back to regular oxygen and stop the high flow. We have been complaining that Eli is a little lethargic lately, mostly since starting the high flow, so we're happy the high flow is going to be stopped. The doctors think the disruption in Eli's breathing pattern has been taking some energy out of him and that's why he's sleepy all the time.

Now we get to the good part. They think Eli can go home on the regular nasal cannula with 3/4 liter of oxygen. This is fantastic news! Patricia and I are both excited but I'm still a little leery. There are a couple more tests they want to run on Eli before they can discharge him but assuming everything looks ok they'll discharge him on Saturday. The pulmonologist wants to make sure they test his CO2 level before we leave and he thinks we should get Eli a vaccination against RSV or Respiratory Syncytial Virus. It's near the end of the RSV season and Eli is already having breathing problems so they think the precaution is warranted. They warn that if Eli were to get RSV we would likely find ourselves back in the hospital in the NICU with a very sick baby. The shot is very expensive, like over $1,000, so they need to get clearance from the insurance company first but they don't think it will be an issue with Eli going home on oxygen.

Outside of the respiratory issues there's not much to talk about. We have several genetic tests outstanding but we should have the results back in the next week or two. We talk about going on the pulmonary service at the hospital so we can bring Eli back to the pulmonary clinics after we're discharged. Pulmonary will coordinate with genetics and the other specialties to get us the information and consultations we need. It sounds like we finally have a plan.

With that our meeting ends and we're off to pack up Eli's stuff so we can get ready to go home tomorrow.