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......

    

And so it begins....a little history

So most of you know a little bit of Joseph's history but for those of you who don't here goes....

     Joesph was born 9 weeks premature.  He was 3 pounds 6 ounces and 15 1/2 inches long.  He spent the first 180 days (6 months) in the hospital.  During that time he had many many issues.  He had feeding issues from the start. He was born at LaPorte Hosptial in Indiana and was transfered to Memorial Hospital in South Bend, IN.  This transfer happened within an hour of him being born via emergecy C section due to low heart rate.   Everything was going good with him until day 13 of life....
     He developed something called Necrotizing Entercolitis NEC.  He went from being on room air to being on a ventilator within 6 hours.  He was very sick.  He was on the vent about 10 days and was extubated back to room air but his lab work just didn't improve.  On March 27, 2008 he was flown via fixed wing airplane to Riley Children's Hospital in Indianapolis.  On April 1, 2008 he had surgery to remove part of his damaged intestine and to place 2 ostomy sites to allow his gut to heal.  I should add he had a pre op ECHO done that was abnormal but they thought it was due to him being ill at the time.  He was very sick after the surgery but recovered nicely.  After he was extubated he had another ECHO.  Again it was abnormal.  He had serial ECHOs done every 7-10 days and they just couldn't figure out what was wrong with his heart.  During this time we started to feed him via NG tube.  He started dumping everything he was fed plus more out his ostomy.  He would get fed 15 ml every 4 hours and he would have 60-120 ml dump out.  He was on TPN for a total of 5 months due to this.  The GI surgeon had the cardiology group look at all of his ECHO's. 
     On of the cardio doc's came to the bedside and did another ECHO and told me "I think I know what it is but we need to take him to Cath lab to make sure...."  On May 15, 2008 Joseph went to cath lab.  During the procedure he suffered a Left MCA Stroke.  But it took us a few days to find this out.  We almost lost him after this cath.  He went into a full blown pulmonary hypertensive crisis.  His heart rate would drop to 50's over and over again.  Finally they sedated him until he could take back over.  We got his diagnosis....Pulmonary Vein Stenosis, 3 of the 4 vessels, severe pulmonary hypertension, PFO, and dialted Right ventricle.  We were devastated.  We were told that we would be lucky to have him for a year.....
     So we got him recovered from the cath and found out about the stroke.  We started looking toward a repair for his heart.  He was still very small and the heart surgeon wanted him to be at least 4 kilos....we didn't make it before he had to go to surgery.  He had his first heart surgery on June 27, 2008....again we almost lost him.  He was on about 12 IV meds and he was on the highest level of Nitric Oxide they had ever put a premie on.  I stayed at his bedside for 10 days before I would leave.  He was extubated after about 2 weeks but then we had withdawls from the narcotics.....HORRIBLE !!!!  The surgeon wasn't able to do the repair because Joseph's body and heart was still so small.  So we started the healing process all over again.  He still wasn't tolerating feeds, still on TPN and he wasn't growing like they wanted him too. 
     About 6 weeks after his heart surgery we went back to the OR to have his GT placed and to have his intestine put back together.  He also has his appendix removed at this time.  We started feeding him small amounts to make sure everything was ok.  About 2 days after he had his first poop in several months.  He worked up to full feeds in about 4 weeks.  We came home August 23, 2008......Stay tuned for more !!!