It is one thing to
go through life with medical problems and many surgeries but it is a totally
different story watching your child go through it. We had a follow up with the cardiologist at
the beginning of March and we were there for 5 hours! What a long day. Cody had an EKG, an echocardiogram and a
chest x-ray. We were told that Cody had
fluid on his lungs and needed to start on lasix. I got the impression that this would help
Cody eat better, gain weight better and overall feel better. At this appointment Cody weighed 9lbs and was
in the 28th percentile. They
were very happy with his weight gain.
It has now been
almost a month and Cody only weighs 9lbs 6oz and is only in the 7th
percentile. He is gaining but it is very
slow. Last week, we followed up with the
ENT. They did another scope and we were
told that he has a congenital glottic web.
This is what is causing him to have such a hoarse sounding cry. Next week he is going in for a swallow study
to see what is causing him to choke and cough so much. On April 11th, he is going in for
a bronchoscopy to make sure his airways are clear and to get a better look at
everything. He will have to go under
anesthesia and spend the night. We are also
following up with cardiology next week and on April 19th, we will be
following up with genetics to get the results back from his blood work that was
done when we were in the NICU. I hope
with all these tests and appointments, we get some answers and they do
something to make him feel better soon.
I know that I shouldn’t
compare, but it’s really hard not to. When
I think back on Hailey at this age, she was chubby, smiling, cooing and
reaching for toys. She was starting to
be more awake during the day and was just so different then Cody is. He still seems like he is 2 weeks old to
me. It takes a lot of work to get him to
smile, he doesn’t coo at all and he sleeps most of the day. I think he is just so tired from working
extra hard to eat and breathe that he doesn’t have the energy to do anything
else.
Let’s just all say
a little prayer and I will update everyone after all his appointments in
April. Thank you for all your love and
support throughout this difficult time.
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