Off to a good Start

What a great day! This morning Megan and her mom headed to Emanuel to introduce Lindsay to Hunter while I stayed back and hung with Stella. We knew this was a big day as the closing of Hunters chest was scheduled for around 10:30. As we have learned in life, in the world of medicine things rarely happen as scheduled...I arrived at 10am and went in to see Hunter with Megan, a few words of an encouragement and we moved on.... There was a prep nurse and some activity but nothing looked liked it was going happen any time soon. We sat in an out of use room while Megan pumped. After Megan finished we walked passed Hunters room and I saw little more than I had bargained for, as I gazed into his room the nurse interrupted me with "you don't want to see that" and I sharply looked away, I had seen into Hunters open chest with nothing blocking it...my knees were wobbly but he's my son and considering the circumstances I could handle it...(note to self: don't want to see that again).

We sat in the lobby area and chatted, Allene, Lindsay Megan and me, for about an hour or so...it is so nice to have family around to distract us. Our case manager came and went with little updates here and there for a procedure that usually takes an hour. After an hour and half we were allowed to see him. Megan and I walked in alone, he was still covered up and still in the same position, so nothing had changed...Megan was emotional and left the room. Just as she walked out a cardiac specialist who works on Dr. Kings team walked in. It was me, the specialist, an ultra sound tech (and her oh so familiar ultra sound machine) and Dr. John, the surgeon who worked on Hunter and who had just sewn him up...

Dr. John and I struck up a side conversation about everyday life for once as the other set up the machine...the room was then sealed off, I was the only one who wasn't wearing scrubs or a hair net. The usually very quiet and soft spoken surgeon was visibly excited, he was giddy. He knew he was about to see the results of his work on and in his 4 day old patient. After a few clever jokes to lighten the mood (I thought they were clever, I was probably receiving courtesy laughs) the lights were turned down and the ultra sound was on...as a side note, remember I have seen probably no less than 1000 pictures if Hunters heart over the past 5 months and I think I have it committed to memory. As the tech went over each area I was receiving play by play over my shoulder from the new personality of Dr. John...he is still very subdued, but it was nice to see him in his element overlooking his craftsmanship. As the tech went over piece by piece the news got better and better. I am telling you I have never been more excited over measurements in my life...Hunters Aortic Arch which was "kinked" and down to a 2mm width in two places was now an average of 6mm in width from top to bottom--this is now slightly oversized to promote flow which will the hopefully promote growth in the rest of the left heart. They doctors didn't know this but Hunter ended up having 3 VSD's (holes in the Ventrical)...two of which showed up on ultra sound before surgery. For perspective the larger of the two was 5mm wide (the tip of a ball point pen is roughly 1mm) the smaller one was about 1mm. To my surprise the ultra sound showed 2 more holes...Dr John quickly explained that with the large hole the pressure in the heart was limited (as blood will always flow toward the path of least resistance), when he sealed it up (which he did using an extra "flap" from Hunters heart) the pressure increased which exposed other holes...these other holes (now two for total of 3 if you count the large hole which was just fixed) are now apparent. Dr. J told me that that these other two holes are so small that 1) he could not find them if he wanted to 2) Hunter will never know they are there as they are two small to effect him and 3) they will likely seal themselves as his heart grows... the final item of concern were two more "downstream" effects from the narrowing of the arch and they were the size of the Mitral and Aortic Valves, or the "swinging doors" to major chambers...the tech and specialist measured the valves (which are small) but they all agreed that at this time they are not worried about their sizes...I almost hit the floor. I was so excited I could hardly stand it. Megan was in the waiting room and I couldn't get to her fast enough...Dr John had to run and I had the news I was waiting for...I literally ran to tell Megan what I had just seen...the feeling was overwhelming, but the hard part is keeping that feeling in check as we need to pray that these successes within promote the growth that Hunters heart needs...at this point, the ingredients for success are all there...

One of the coolest parts of today was fact that when I watched the ultra sound tech move her hand held monitor over Hunters chest I couldn't tell that his chest had just been wide open minutes before...Dr. John and crew had done such an amazing job literally sewing his breast bone together with stainless steel "piano" wire, coiling 6 wires around his breast bone and through his ribs to bring it all together and then sewing him up that it was like he had surgery weeks ago...amazing. The wire will literally become part of him as the bone grows around and engulfs the wire until bone over grows the wire and it disappears within...crazy.

Starting tonight, they will slowing ween Hunter off of the paralytics and let him try to breath on his own (this will take a few days), once he gets the hang of that they will back down the sedatives, remove the breathing tube, feeding tube etc...

We feel so blessed to be at this point which seemed like it was so far away...each passing day will bring new challenges but present major opportunities for positive change. What this kid has gone through in 4 days of life is unimaginable, but he's made it and will be stronger for it...You can not imagine how excited we will be to see a toe move, an eye blink and to hear a squeek or coo...it will take weeks, but day by day we will be there to watch it unfold and help him grow.