12/30 - Homeward Bound!

Leo is going home tomorrow! They will do a chest x-ray tomorrow at 4:30am and if the fluid accumulation looks the same or better, the neonatologist and surgeon agree he is healthy enough to go home. The question is are Mom and Dad ready? Terry and Mom have been frantically getting the house ready and I have been taking a crash course in nursing.

Unfortunately, our core nurses are both gone today so a nurse who is unfamiliar with him is trying to prepare us to survive on our own.  She has lined up about 10 doctor appointments and packed up a huge box of supplies. There was some concern that we would not be able to access his special fat free formula, but they got us a 12 day supply and found a company to deliver it in the future. I was pleasantly surprised that is will only cost about $8 per day.  I thought it would cost a fortune because the demand has to be fairly low since chylothorax is pretty rare and only lasts a few months.  His new doc decided along with the surgeon that they do not want him on a feeding pump as night. This is good from the standpoint of one less piece of equipment, but I'm not looking forward to getting up every three hours to complete the 1/2 hour task of feeding Leo regardless of if he is awake or not. O'well should be more restful than the couch in his NICU room! 

We are fighting with the home coordinator to get us an oxygen tank for at home even though he hasn't needed it for over a week.  They think his oxygen declines in the past may have been caused by central apnea related to his brain stem issues. If this is the case, the issue could reappear at anytime and would be much easier to treat by blowing O2 in his face (how we treated it in the hospital) than administering CPR. The new doctor thought I was making a very good point and said we should have the O2, but now we are waiting to see if insurance agrees. We already have the tank in our room so I'm planning on taking it home.

I wanted Sammie here when we brought Leo home so we could all ride home in the van as a family, but logistically I do not think that is going to happen. Terry is going to come up early in the morning to be here for one last meeting with the doctors and ask last minute questions.

Hopefully we will move to a new chapter in Leo's life tomorrow!