Home at last...

We just rolled into town at about 4:30pm. Feels good to be back!!! Jackson is doing really well. He hasn't complained of any pain. Poor guy just walks like he got off of a horse. Both of his legs are taped from his waist to mid thigh. I have one thing that I need to correct. I tried so hard to explain in English what a fenestration was and still didn't get it right!) I obviously was in "mommy mode" or out to lunch when I heard the explanation, so here goes again...They connected the inferior vena cava to the pulmonary artery by a gortex tube during his last surgery. The fenestration is the hole that they placed in the side of the tube. I stand corrected! Once we get settled I'll try to post some pictures. (Little man got a lot of tatoos to show off...10 to be exact!) Until later...

Back to Charleston

We'll yesterday was the big day...so why am I just now posting you ask?!? EXHAUSTION!!! We got to MUSC about 7am, got checked in, and headed on up to same day observation. We already knew that he would be 2nd case which meant he wouldn't go back until around 11am. As we got settled into our little cubby, Jackson started...I wanna go home. I don't like being far far away from my house. Poor little guy was in familiar territory!! He finally warmed up to the idea, but not without giving everyone the cold shoulder. (By the end of it all, nurses were asking him to be there boyfriend!) At about 9am, they decided that the first case was going to run long so they let Jackson have some sprite for a whole 10min.(He had not been able to eat or drink since midnight.) Next he went for an echo...he assumed his usual position-hands behind his head watching cartoons, and didn't move until it was all over. Then they let us go to the atrium-if you remember from before, this is the play room that has EVERYTHING including the kitchen sink! Of course he had a ball!! Unfortunately they close at 1200pm for a couple of hours, so back to same day we went to hang out. After about 30min of being there Jackson took him a good ol' nap (did I mention that he hasn't taken a nap in the past 2 years!!) At about 2pm they called back and told the nurses to get him ready, which meant it was cocktail time!!! Once again they gave him some versed...the good stuff! He was drunk as a skunk, hiccups and all! He left at around 2:30pm. The first hour was spent getting him prepped...breathing tube in, iv's in, under anesthesia, and catheter access obtained. The whole point of this heart cath was to close his fenestration. What the heck is a fenestration you ask? Well, I'll do my best to try to explain it in English...

Because of Jackson's particular heart defect the whole purpose behind the 3 heart surgeries is to "reroute the plumbing" so that his heart doesn't have to work as hard. Each time they have changed the plumbing,the pressure in his heart has changed. The final surgery that he had in July 2009, connected the inferior vena cava to the pulmonary artery (the large vessel that carries blood from the lower half of the body was connected to the lungs). Of course, this made another change in pressure, to help with that they made a "pop off valve" aka fenestration. A fenestration is a small gortex tube that branches off from the "new connection" into one of the chambers of the heart.. So, if the pressure was too high the extra blood would have a place to "pop off" instead of trying to go to lungs (which could potentially cause problems). After the body has had time to adjust they go in and close off the fenestration.

So, back to the heart cath...They first go in and check the pressures in his heart, then they do a "test close" to make sure that he would tolerate them permanately closing the fenestration. He tolerated it fine so they went ahead and closed it by plugging it. No extra vessels were seen! (sometimes vessels will grow because of the change in pressure...these are bad and have to be taken care of because they make his oxygen levels go down.) He did extremely well. He stayed asleep for the whole 2 hours that he had to remain completely still! Because it was so late when he got back from his cath they decided that it would be best for us to spend the night. As they were fixing to move him to his new room they noticed some new blood on his sheet. One of his cath sites was bleeding (they went in his right and left groin). After about an hour of holding pressure it finally stopped bleeding, but once again he had to lay completely still for 2 hours and now he was awake!! He did amazingly well. After being awake for a little he was in a really good mood, no pain and has been very cooperative. Darrin and I were able to sleep (if you call it that) with him. I slept in the bed with Jackson and Darrin slept on a vinyl couch that was about 3 feet wide! Jackson seems to have slept really well. Hopefully we will be heading back to HT really soon! Thank you so much for your prayers, calls and cards!