The last week has been very difficult. First, McKenzie met with
the gastroentergologist who suggested McKenzie's feeding tube be
surgically placed in her belly to help with the acid reflux
problems (rather than down her nose and into the belly). Two days
later, McKenzie went for a routine check-up with her cardiologist
and her oxygen saturation levels were low. At that point in time,
it appeared that the shunt may be getting too small even though she
had not grown that much, indicating possible blockage. We set up an
appointment for the this week to re-check. At the same time, an
appointment to do another heart catheterization was scheduled for
this week. It was very scary, but all we could do was wait. At the
same visit, the cardiologist and GI doc suggested we take out the
feeding tube to see what happens if Izzy was on her own. Day 1,
Izzy did great! She was eating 3 ozs at a time. We were really
happy. But as each day went by, she ate less and less because of
the acid refulx. Finally, on Monday, we could call the GI to get
her on different medicine. We knew that would be the answer. Well,
the pharmacy that filled the script closed at 4:00 and did not call
Dale as they were supposed to do (and their line was busy the 50
times Dale called them and we don't know where they were located!),
so Tuesday I had to pick it up. This morning was the first chance
for her to take the new med and it seemed to help. She ate more
than she had been doing. Then we went to see the cardiologist.
McKenzie's oxygen saturation was back to her normal levels. I was
ecstatic. The doctor cancelled the heart cath and they decided we
can wait on the feeding tube insertion in the belly to see if the
new med really works and she continues to eat well on her own.
Then, we went to McKenzie's primary care doctor. It was there that
I first saw the blood in McKenzie's stool. The day care ladies had
mentioned it, but I thought it was from the diaper rash wounds. It
wasn't. Every diaper since 8:00 this morning has had blood. It is
scary, but we see the GI doc again tomorrow at the insistence of
the primary care doc and GI doc. We are definitely back to the
roller coaster. Did I mention Dale has been out of town since
Tuesday, so I get to do all of this on my own, while trying to go
to work and take care of Phin. All of you working parents are
heros. I don't know how you all do it, but I'm learning. I'll have
more news tomorrow. Hopefully, the blood is nothing to worry
about.
Mel
PS
Phin calls McKenzie Izzy, so that is why she is mentioned as such above.
Mel
PS
Phin calls McKenzie Izzy, so that is why she is mentioned as such above.
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