Re: Pulmonary hypertension in infant

Posted By Anji on April 21, 1998 at 16:35:05:

In Reply to: Re: Pulmonary hypertension in infant posted by CCF-CARDIO-MD-APS on April 21, 1998 at 14:43:24:







Regarding a follow-up cardiac cath, I have a question for you.  I fully intend to ask
my son's doctors, but would also like to hear another opinion.  My son developed a
large "clot" in the right femoral artery, which led to several days in the ICU
determining the best treatment.  Heparin or Coumadin was not an option, as there
was also a "clot" where the catheter had punctured a vein during the procedure
which led to contrast material being "leaked" out, it eventually filled his lungs
and was seen on radiographs to travel up his esophagus and out his mouth and nose.
No explanation was ever found for this, other than he must have "coughed" and
brought it up.  My question is, is it safe to use this same site for another
cath?  Would it increase the chances of another clot?  His eventually resolved, with
only slightly diminished pulses in his right leg persisting to his foot.  However,
his leg has continued to grow as well as his other leg, and no lasting damage is
suspected.  However, if there is another sight that could be used, such as his arm?
I feel this would be better, if only to make mom happy!! : )
No, I was not led to believe he was "fixed" and cardiology follow-ups are destined to be
part of my son's future.  However, I was led to believe that the VAST majority of children
with comparable defects and repair have excellent long-term survival rates.  Would you
agree with that statement?  My son has moderate mitral valve regurgitation at this point,
and a small residual VSD with little or no flow.  However, it was only AFTER the surgery that
the subject of lasting pulmonary hypertension was brought up.  I didn't know enough
before hand to ask the appropriate questions, but am learning quickly.  My
interpretation of the cardio's "expectations" for my son is that he will
probably never have "typical" pressures either in his lungs, or his heart, and
that it's unrealistic to shoot for that.  That also bothers me.  Depending on the
outcome of his testing, we are presently looking for another hospital that perhaps
has more experience with infants with the particular defect, and DS also.  Would
you have an opinion on that one? : )  Thank you again, for your time.  I am looking
for any and all info that can help me help my son.
Anji