Heart Repair One Step at a Time : Step 1 - March 7

First - Baby Jacob continues to be happy, happy, happy and the come-back of his developmental skills (from his pre-spasm progress) is impressive (and awesome!).  Both of his therapists this week (he does OT and PT once a week) were super excited and impressed at how well he did.  Miss Em who takes such good care of him during the week and had only met Jacob post-spasm diagnosis...  is now seeing the old baby Jacob emerge and kept saying this week…he’s so strong!

About his little heart - the short version:
Jacob’s congenital heart defect consists of two holes in his heart - a small ASD and a small VSD.  Both of which contribute to his heart functioning less efficiently than it could/should.  His little heart is still doing it’s job - the oxygen levels in his blood continue to be good but the concern is increased pulmonary hypertension that was identified at his last follow-up. Fixing this is important because if left untreated it could cause long-term damage to the lung arteries. The pulmonary hypertension was possibly exacerbated by the steroids but the most likely root cause is  the resulting effects of the ASD and VSD. [Note: While not a cardiologist, I am pretty good at hydraulics - pumps and pipes - so I *could* further explain with some confidence the interplay between the differential pressure in the heart and resistance in the lung’s arteries but I doubt anyone else finds it that interesting].  Bottom line - fixing the holes in his heart should fix the pulmonary hypertension - and his heart will work better in general.

March 7 ---- Step one is to have a cardiac catheterization performed.  Jacob is scheduled to have this procedure on March 7.  They perform two a day (three times a week - every week) and Jacob’s is the first one of the day. It will be performed by his pediatric cardiologist who specializes in these procedures.  It does require general anesthesia and will take a couple hours.  Unbelievably - assuming no complications - he will come home the same day with nothing more than a band-aid on his hip where they accessed his vein.  This procedure will give them valuable data to prepare for the repair surgery…the most critical of which will be pulmonary artery pressure measurements and his lung’s response to vasodilators (oxygen and/or nitric oxide).

The heart surgery itself has not yet been scheduled and we continue to work with the team on a timeframe.