Saturday, April 27, 2013

Home from PICU

Finally came home Friday afternoon. So glad to be out of the intensive care. They took him off air flow and watched him for 12 hours before we left the hospital.   We like being back to our routine.  I found it a big challenging to quickly set up  his BBG (baby booger grabber) and  set up the cough machine at first but once things were plugged in and put together, it was no problem.

At first he was breathing at 40 breaths per min and sounded a bit "junky" as our nurse Nathan said at the hospital - but at the PICU they would put him on the CPAP. At home we don't have a CPAP. This made me nervous yesterday but it was nice to have my mom here so we could count his breaths together.  I think through the night he slept more and daddy fed him a couple times. I am relieved  he is breathing now around  30 -35 bpm (breaths per minute). 

There is still slight to mild retraction around his ribs and lower stomach.    Some say this is a natural part of SMA and some say this is part of the process when he is just sick.  We will be home for awhile and I am going to be conservative with  our outings.  This is a great weekend for me to stock up on groceries.

We ordered a pulse oximeter and it should arrive soon. Its a cute frog one that fits over his finger or toe that the care manager suggested. 

here is another video of our play time at home. taken during April.

What a trooper with all those wires  -
Nice to use our feeding chair in ICU beds


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