December 2'nd our little mans heart rate started jumping all over the charts, it was dropping down to low 30's and spiking to high 150's & his blood pressure was elevated. A definite cause for concern. The doctors acted quickly with medications & machines, unfortunately not quick enough. Shane suffered from a stroke in the part of the brainn (right cerebral hemishphere) controlling things such as hearing,seeing,smiling,talking,feeling etc. A full day into his life he was suffering from strokes leading to brain damage & had a pacemaker operation. We will not know the extent of the damage from the stroke until Shane gets older, we are seeing improvements every day now as we fight with him.
December 5'th 2011 - after extensive testing & panick to find out what was causing such an irregular heart rate and strange BP the doctors had a final diagnosis for us. It wasn't just an infection and certainly wasn't a result of the surgery. Shane has Hypoplastic Left Heart Syndrome, more commonly known as HLHS. In HLHS the left side of the heart, including the Aorta, Left Ventrical, and the Mitral Valve are all underdevloped. This was NOT found in utero.
Over the next two years Shane will face 3 reconstructive surgeries, to hopefully solve these issues. One as soon as possible, one between 4 & 6 months & a final at 2 years. The first was the Norwood Sano Procedure. December 9'th Shane underwent the first major heart surgery - The Norwood Sano Procedure the operation itself was done within a few hours. The surgeon & ped cardiologist quickly explained the operation itself had gone well, but Shanes recovery wasn't off to a good start. He was still on the heart & lung bypass, they'd make an attempt to take him off & it failed. He wasn't breathing on his own, his heart wasn't beating on it's own & he had very poor kidney function. Our son was put on ECMO - a form of life support.
The past months have been filled with infections, blood transfusions, dialysis & constant scares. At one point we had to make a decision - we were either going to keep on fighting along side Shane or take him home & let him pass away. We couldn't see our child giving up this fight, so we continued down the fighting road. He's continued to gain weight, grow & learn new things daily. This past week our son got a heart cath put in, this means we WILL be proceding forward with his next BIG open heart surgery, the Glen Procedure. We don't have a date for this yet, the doctors will inform us when they have a meeting with the whole team.
Although our son has spent his entire life in a hospital, we couldn't be more thankful & blessed for his little life. He's a fighter, a miracle & a true inspiration to all of us. He's learned to smile, coo, move around, roll onto his tummy, and we're working on sitting up. His smile lights up my whole world and makes each day worth it. We are able to leave on day passes a lot of the time - Shane has been to OUR home twice, as it is a few hours away. We spend our day passes at Ronald McDonald House and it's simply amazing. Together, as a family we are getting through this. My husband & I have grown closer & I can't imagine going through this with anyone else, I'm thankful every day for being with him. I couldn't do this without him. Our 2 year old, Nora loves her little brother & says prayers constantly for his health & recovery.
Here we go on a long, crazy, emotional journey!
Our Easter Family Photo!
And some older photos:
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