Monday, January 27, 2014


So this post was supposed to be written awhile ago, but we had a whirlwind welcoming home of Cohen back on Friday January 17.  We were so excited to take our little guy home for the 2nd time and felt much more prepared even though we were coming home with more equipment (pulsox monitor and oxygen tank) as well as more meds (5 meds to be exact!).  We arrived at home with him hooked up to his oxygen travel tank they dropped off for us to take to the hospital.  It took us a few hours to get settled, luckily during Isla's nap, and then we awaited his large oxygen tank that was supposed to come from  the provider the hospital set up for us.  After hours and hours of waiting, pacing and starting to get a tad nervous about them delivering the oxygen, they finally showed up at around 9:30pm when our travel tank was about to run out.  The delivery man walks up our stairs and slides in a 50 gallon humongous tank that looks like a mini missile you would send into space.  He also brought the electric concentrator but proceeded to tell us the extra adaptor was on back order.  OF COURSE!  He asked where the child was sleeping at night.  What do you mean where he was sleeping at night? He sleeps all day and he doesn't spend his evenings alone in our living room. I had to hold in the tears and glanced over at Ryan and realized that this was our life now.  We had a humongous oxygen tank in the center of our living room for Isla to dance around.  I guess it would make a nice new centerpiece and she could use it for magnetic letters.

So for the previous 9 days our daily schedule has looked a little like this:
-Wake up in the morning in our bedroom with Cohen after Isla has woken up as well.
-One of us goes with Isla to get her morning milk and snack and we start a TV show for her to watch so we can settle Cohen in.
-Detach Cohen from his feeding tube, oxygen, and pulsox monitor.
-Drag his feeding pump out into the living room.
-Drag his 50 pound tank into the living room.
-Bring him out into the living room and reattach him to the oxygen and pulsox and feeding machine.
-Give him his morning meds (infant steroid inhaler, prilosec,, erythromyacin, and polyvisol) through his gtube.
-Love and cuddle on him all morning.
-Give him a 2 hour break from his food so that we can move a little bit off the couch, literally.  That has been the hardest thing in the transition home is trying to please a busy toddler, one who wants to go downstairs and play in her playroom, while having another child hooked up to 2 different machines during most of the day.  So the breaks are what provide our SANITY!
-Hook back up to his food after Isla gets put down for her nap and spend some quality time cuddling our little munchkin.
-Give afternoon med (erythromyacin)
-Spend more time sitting upstairs in the living room on the couch...
-Have another 2 hour break
-Give evening meds (infant steroid inhaler, prilosec,, erythromyacin, and zantec).
-Cuddle a bit
-Unhook him from his oxygen tank and pulsox, detach from feeding pump.
-Drag the huge tank back into the corner of our bedroom.
-Get Cohen situated and then try to sleep.

This schedule was crazy and was slowly starting to get easier day by day.  We had become timing addicts, timing his respiratory rate consistently and repeatedly throughout the day because that was the only thing we didn't have on a monitor at this point.  He was very consistent with his breathing and was doing well.  On Saturday afternoon, he took a sudden turn and we are still not sure why.  His respiratory rate seemed to increase into the 80's and was staying there on and off throughout that evening as well.

In the morning we called his pediatrician on call and she recommended we go back into the ER just to rule out he hadn't caught anything.
The ER was a whirl and of course again we were admitted due to his rapid breathing....

And the 3rd time's the CHARM right??

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