More history....

     So we came home.  He came home on Pregentamil formula.  He was getting 90 ml every 3 hours.  It took about an hour and a half to feed him.  I was up all the time it felt like.  He would vomit, retch and had horrible diarrhea.  I was at my wits end.  I had thought he had a lactose issue so I switched his formula to Similac Sensative.  It was the Ready to Feed kind.  He was like a different baby.  Started to tolerated feeds and he gained a pound in about 6 weeks.  So feeding was somewhat under control but his heart and breathing were not.
     So we went back to the cath lab in September.  His right upper vein was 100% blocked again.  The ones on the left were about 60% blocked.  They did some work and got them back open.  We started him on a drug called Rapimune.  It is used fro many different things.  It is in the drug heart stents and was being used in lung transplant patients to help prevent rejection.  It helps to stop scar tissue in smooth muscles, like veins.  So we went back every 4 weeks for ECHO's.  In December he had another cath.  Same story.....same treatment.  Then in January when he had ECHO we knew surgery was going to be soon....
     During this time J started to have other issues.  He was diagnosed with a seizure disorder called Infantile Spasm Seizures.  They think it was due to his stroke but they couldn't say for sure.  Then we got the call......
     February 3, 2009 J went back to surgery to have his repair.  It was a LONG day.  He went back at about 9 am and I was able to see him about 5 pm that night.....but he was having a cardiac tamponade and went back to the OR.  He came back out about 7pm.  Again he had a long recovery.  He was showing signs of a pulmonary hypertensive crisis again when they would decrease his sedation.  But that wasn't the case.  He was having seizures.  He was started on a medication to help.  In the mean time I was able to get a med called Vigabatrin from Canada as it wasn't available in the USA.  We came home from the hospital on February 20, 2009, I started him on the Vigabatrin the next day.  In about 2 weeks the seizures were gone !!! 
     The surgeon that did J's repair was very happy with the surgery.  At about day 3 post op an ECHO was done.  I should mention his lung pressures were higher than his systemic blood pressure.  Lung pressures a suppose to be about 1/3 of that.  That ECHO showed that his lung pressures were half !!!!!  It was amazing....
     Story to continue......