School for the mommy of a complex baby..

Today's day consisted of myself and my wonderful mother a.k.a Mimi, learning how to use all the equipment Reagan is being sent home with. So maybe some day soon my husband and I will be able to go on a date together. 

My brain is fried at this point and I am not sure if I mentioned that the CPAP machine Reagan was sent home from Tufts with was completely inappropriate for her age, the machine is the same machine adults use and has no alarms if the mask is leaking, and no battery back ups if the power fails, and it isn't portable, so if she falls asleep in the car or she spends the day in Boston for follow up appointments and naps we need to put her on the machine. 

The FDA hasn't approved CPAP machines for kids under the age of 4 (I believe). So it was an ordeal to get a company to lease us the machine in the first place. Tufts told me that they had never sent a baby home on CPAP before, so I am certain they had no idea what they were doing. The team of doctors and the respiratory therapist at Children's said they send patients home on CPAP all the time. Tufts also sent her home WITHOUT an oxygen monitor, which come to find out is a BIG no no! They had told me that they didn't want false alarms to give me anxiety. Which is funny because the pulmonologist at Children's said to me when I told him that piece  of information "ok... So lets take all our ICU patients off the monitors because we don't want false alarms to give us anxiety, that makes no sense". I thought it was amusing. The logic behind needing an oxygen monitor with the CPAP machine is if the machine fails and her oxygen levels drop, the monitor will alarm to let me know. She is also going home with supplemental oxygen in case her oxygen levels do drop and she needs it. She also has a new, portable CPAP machine with 9 hours of extra battery backup in case of power outages or traveling. 

So things my mom and I learned today:

1) How to use the CPAP machine

2) How to use the oxygen monitor

3) How to use the pump the delivers formula through her Ng tube

4) How to replace her Ng tube god forbid she or her big sister rips it out

As long as Reagan tolerates her new CPAP machine tonight we will be going home tomorrow! She is on it right now, and so far so good!

My eyes are crossed and most of this post probably makes no sense, so ill fix it tomorrow.

Happy baby knows she's going home tomorrow!