recovery has had it's ups and downs. As we close in on the one month mark of
his open heart Fontan surgery, we are looking at some new challenges. Nico's
body is slowly getting used to his new circulatory system as his blue blood now
solely pumps through his lung and bypasses his heart. This is a huge transition
for his little body. The cardiologist is still playing with his Coumadin to get
him to a therapeutic level. INR readings are taken with a drop of blood through
a finger prick and we immediately get results. From that number his Coumadin is
moved either up or down. Lasix has been gradually lowered as well but we are
keeping a very close eye for pleural effusion.
The first few days at home , Nico couldn't even walk. Gradually he
regained some strength back and he is walking around, unsteady at times but
gaining strength. Physical therapy will start this week.
Nico's eating has not improved. An NG tube had been placed after some seizure
activity was observed during the early days after the Fontan. Dehydration and
low blood sugars were to blame. With an 860ml fluid restriction it is difficult
to maintain hydration and the proper amount of dryness to inhibit effusions.
Proper nutrition is extremely important at this point of his recovery, his body
needs to stay strong. NG tubes are no fun, beside a tube through your nasal
cavity, imagine it in the back of your throat while trying to eat. Nico's heart
defect greatly affects his entire body and all of its systems. Unfortunately
his appetite is taking a big hit. It has been decided that the reward outweighs
the risk and Nico will undergo another surgery in the upcoming weeks to place a
Gtube. With a Gtube placed Nico can try to get back the sensations for wanting
to eat and hopefully an appetite without the nasal interference. Feeding
therapy will also begin soon with the help of a speech therapist.
has been cleared by the cardiologist but it does not come without risk, Nico
can not remain on Coumadin or his aspirin in the days before surgery so we will
be back to square one with those meds. On the upside we are hopeful that this
will be a 1-2-3 in and out surgery and Nico's quality of life will be so much
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