First things to deal with coming home...

We got home late in the afternoon on Thursday and the event was not without some difficulties. We had to wait at the pharmacy to get meds ready while they were being prepared and consulted on; then the arrival home was a bit tough as we got a delivery from the oxygen and food supply delivery company.

(Jason is getting a special low-fat formula that is mixed and prepared daily. And he gets food in little bits continuously at night by the help of a feeding machine that doles out a small bit from a feeding bag every few minutes.) Well, our trouble was that the bags were not availble at the time we got home and the machine was delivered. So that made for some tense moments until the issue was resolved later in the evening. My thanks go out to the delivery supervisor that braved traffic and a late night to get the required supplies. It was definatly above and beyond the job description in my book

Then on Friday we had our first outing as Jason had his first doctors appointment. The doctor said that Jason looked really well and he was *especially impressed* with the sound of his heart as he performed the examination. (Big, big kudos to everyone to UCSF!!)

Our challenge that we faced was we had to lug the oxygen tank around in the car and into public. Its pretty big (its a bit bigger than a baby car seat) and can be cumbersome even in a two-wheeled cart. In the picture it is the tank in the silver hand cart. Trust me, it was not easy to deal with and it kept running into things despite our efforts. Its a big pain inside the house as you have to move it along with the baby from room to room.

But things got better. On Friday afternoon and Saturday we got more oxygen tanks. The big tank stays in one place and a long tube goes throughout the house as we move Jason about.

The large tanks are expected to last for bit over a week at Jason's rate of consumption, and smaller tanks are easier to carry around and they should last about 4-6 hours for each one.
We have not tried them out yet, but you can be sure we will soon as Jason will need to go to regular doctor's appointments with his pediatrition and cardiologist in the future. That's all for now