04/09/10 Parent Conference

Today we had a chance to meet with one of the tracheotomy home care specialists to go over all our questions regarding a tracheotomy. We got to examine some of the actual tracheotomy tubes and the nurse explained how they work. We got some literature and diagrams but mostly we got a lot of questions answered.

The actual procedure is about 30 minutes. From there you have about 6 or 7 days of recovery time in the NICU to make sure the stoma (tracheotomy hole) has healed. During that 6 or 7 days we would figure out what level of support Eli would need from a respiratory standpoint. Assuming everything is looking good at that point we would be moved down to the floor to the pulmonary care wing. Eli would continue to be cared for while we go through the steps and processes we need to complete for training and to prepare our home for Eli. We would need to arrange for home nursing care, make sure there's a good environment for Eli (he already has his own room), and we would need to make sure we have adequate electrical service to his room if he needs to be on a ventilator or other equipment.

In terms of training, there is a list of skills about a half a page long that we would need to master before we could bring him home. These skills include replacing the tracheotomy tube, suctioning the tube, cleaning the stoma site, handling any equipment Eli is on, etc... It's a very comprehensive list. Training is handled in 2 hour increments which we could try to schedule out so I could participate. Unfortunately all of the training happens during business hours from 9:00 to 5:00 so I'll need to take a couple hours off work for each training session. In total there are about 20 or so hours of official training that needs to take place. The real training is when you actually perform these tasks at the bedside on a daily basis. We've already learned some things, like how to change Eli's feeding tube and give him feeds using the home care feeding pumps and we learned that mostly through observation. I'm confident that we will pick up the training without any problems.

Patricia is still staying with Eli in the evenings but she is coming home around 8:00 or 9:00pm so she can be home when the boys wake up in the morning. I worked Thursday and Friday but my eyes are really bothering me and by the time we finish with the parent conference Friday evening my eyes are starting to swell. By early evening it's clear that my eyes are infected with something so I've got a head cold, sinus problems, and my eyes are swollen and filled with gunk. This is what I like to sarcastically refer to as "good times". I'm planning on visiting the doctor's office again tomorrow morning to see if we can't get some of these problems cleared up.