Our routine

Life with Split Pea is really quite similar to life with a normal newborn, we just have a few extra steps added in our day (and special things to look out for when he's sick or stressed). 

This was a recent night after bath.  I was giving Split Pea a oral dose of hydrocortisone, an injection of growth hormone, and testing his blood sugar level. 

He takes hydrocortisone (1.2 ml) by mouth every 8 hours.  (It tastes a little like cough syrup, but he doesn't mind.).  We have it mixed at a compounding pharmacy at the hospital every 30 days.  It is only good for 30 days at a time, and must be refrigerated.  He will need this (or an oral pill like prednisone) for the rest of his life.

At night, he also gets an injection of growth hormone (currently .18 mg/day).  We were trained by a special nurse on how to use this computerized delivery device, how to insert the needles into the device, how to mix the hormone, etc.  The vials of hormone come in a powdered form with a system to mix the vial into a liquid.  Once mixed, the hormone is only good for 21 days and must be refrigerated at all times or it will break down. 

The injection is really quite easy and he rarely cries when getting it (we rotate clockwise from each upper thigh to each butt cheek).  When he gets older, he can even do it himself.  He will need this every day until he's done growing, and perhaps occasionally as an adult. 

Approximately twice a day, before he eats, I test his blood sugar.  The steroids he takes, in conjunction with the growth hormone help regulate his blood sugar, and when it's low, that can signal a problem.  (That's why I carry a glucagon injection, just like a diabetic).  This is a heel stick and a little test strip that is read by a computerized meter.  The endocrinologist can download the meter information at each visit and get an overview of his sugar levels.  Very high tech. 

So it's overwhelming sometimes, but in only 2 1/2 short months, it feels pretty 'normal' to us.  I'm just thankful everyday that all of this medication exists, and that Split Pea is going to be able to live a healthy and productive life thanks to the amazing marvels of science and medicine.