Update

Tuesday was the day of appointments for the family. Jett had 3 and Jace had 1. It was a long day but nice to get them all out of the way. Jett is doing fine, he is sounding a bit more congested with some yellow green mucus so he is back on antibiotics. I dont think we will ever get rid of c-diff because just as we get it under control, he is put back on more anitbiotics. He is tolerating his feeds well but we still have a long way to go until he can be off the IV nutrients.

Pj and I are exhausted beyond belief. We joked because we had a babysitter for Jett tonight and discussed getting a hotel room so we could catch up on sleep. We went to dinner instead but we could barely keep our heads off the table. Jett sleeps very poor lately...not really sure why. The day is just too busy to catch up on sleep. He gets a minimum of 9 breathing treatments a day, has 12 meds to be given in his Gtube, not to mention the 4 feedings thru the Gtube, the dressing changes and the central line and the nutrients that run through it. Pj has gone back to work and I dread those evenings by myself. I usually go to my parents although packing up all of the necessities is a chore in itself!

I'm not complaining though b/c it's all worth it to have him home! Hopefully soon we can start eliminating some of the regimen as he tolerates more and more feeds.

Thank you for your thoughts and prayers!

Liz and fam....