Tuesday, May 15, 2012

News from our cardio appt

Today was a bit hectic. Jensen has been getting very crafty with pulling out his NG tube. He always seems to do it at the worst possible moments, like this morning at 5 am when Jeremy was rushing to get ready for work and I was hoping for another hour of sleep. That pretty much set the tone for the day ;)

For the first time, Jensen was fussy at our cardiology appt. He is normally such a happy, smiling baby, but today was just not his day. It took about 30 minutes just to get his sats! Luckily, everyone at that office is fantastic and so patient with us. Jensen was even fussy during the echo (he normally loves looking at the black and white screen) so we had to "sedate" him with some sweet-ease on his binky...works like a charm.

Although little man was a grump, they were able to get great images. Dr. Robinson saw that Jensen's pulmonary arteries are a little small and there was a small amount of narrowing in his stent (which is in his left pulmonary artery). His recommendation was to go ahead with a cath to balloon the stent (to make it larger). Once he has the cath, his docs will be able to make a better decision about when to do the surgery. They might do the cath, balloon the stent, and wait on the surgery. He said this option would give the pulmonary arteries a few more months to grow before the Glenn. The other possibility is to go ahead with the cath and then immediately do the surgery. It depends on how his vessels look and we won't know until he has the cath done.

Just FYI: a cardiac catheterization is a major procedure, similar to surgery. Risks include clots, stroke, heart attack, arrhythmias, or fluid build-up around the heart. As some of you may recall, during one of Jensen's last caths he developed a clot in an artery in his leg, that fully occluded blood flow. That means that leg can never have any procedures including: immunizations, catheterizations, IVs, even blood pressure can't be taken in that leg. As you can imagine, we do not take this lightly and will be fighting like hell to get back to CHOP so they can do the procedure. 

We aren't shocked by this news, but it is still hard to hear. We are so anxious for interstage to be over, but the only way to get out of interstage is for him to complete the Stage II repair. Another surgery seems impossible to bear. But, so far Jensen has beaten the odds many times and he has proven to be quite the little warrior. We know our little guy will do great, we just hate to have to put him through so much.

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