When we were preparing for discharge from the NICU I attempted
to learn when I needed to worry about her respiration count, but it never was a
good way to determine how she was doing, her breathing bounces all over the
place. If she looks comfortable and isn’t crabby or excessively sleepy, pale,
or sweaty I figure she is ok. I requested/advised/tried not to step on toes and
said to wait to turn up her oxygen for an actual desaturation, to see if this
increased rate impacts anything. Later in the day she had another episode
during a feed and they watched her, they stopped her feed and vented her and
she did just fine.
Anya’s personality has blossomed over the past couple of
days. She has rarely been cranky and flirts with everyone. When she is fussy or
seems hungry she stops when she sees me hook up her feeding tube. After the episode
of increased respirations we were questioning whether it should be continued. I
showed her the tube and asked her if she wanted it, and she stared so intently
at it, it was obvious she did.
I am happy she is doing well but am anxious to get her home.
It is hard to get in the Christmas spirit when one of your kids is in the
hospital. It is also hard on Arwen to be bounced around again. Everything is
still pointing to a very slow recovery; it is difficult to say when she will be
home.
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