Friday, November 1, 2013

Update on Alec

I wanted to update everyone on what is going on with Alec. Pretty crazy that he hit the two month mark yesterday. And these last two months have easily been the best two months of my life for sure. I couldn't be more in love with this little guy if I tried. Unfortunately, We have been in the hospital since this passed Tuesday. Some things changed pretty abruptly this passed week.

On Tuesday afternoon, Alec and I were hanging at home. I was pumping in his room and he was napping in mine when he started stirring. His stirring turned into a little crying fit, and by the time I got a hold of him, his crying turned into a whale. It took me a minute or two to settle him down and when I layed him down to re-swaddle him I noticed his color was grayish/blue, especially his lips, hands, and feet. I gave him some time to recover and his color did return quickly once he settled down, but it nearly scared me to death. Being that he has a cardiac defect, I knew that this could happen and I was somewhat mentally prepared on how to handle it. I called the pediatrican's office right down the road and they encouraged us to come right in. At the office, they assessed him, and checked his oxygen level... which had dropped a few points since our last outpatient cardiac visit. The pediatrician called CHOP and the cardiac fellow encouraged us to come to their ER. We were admitted into a room by midnight. 

Over the course of the last few days, they have had him on a little bit of supplemental oxygen. His oxygen levels have improved, but not enough to send us home. We were hoping that Alec would be able to remain stable until after the holidays and then we could move forward with surgery, but it looks like that will not be the case. The doctor's have talked to us about two options... one being a shunt. We were hoping to avoid this first surgery and the doctor's agree. So instead, they are working him up for the second surgery, called the bi-directional glenn or the hemi-fontan. They often perform this surgery between 3-6 months.The cardiac team is pretty thrilled with how big Alec has grown over the last two months,  up to 11.7 lbs. They say that normally cardiac kids do not thrive this well, so the fact that he is the size of most babes when they are reaching the 3-4 month mark, reassures them that he could potentially handle the second surgery a little earlier. There are some serious risk factors, but they are performing a thorough work-up so that they can hopefully avoid any complications. Possible surgery early next week.

Today, Alec will be getting a cardiac catheterization. They will be putting him under general anasthesia, placing a breathing tube, and then threading a catheter through one of his major vessels in his groin and up to his heart so that they can take some pictures and measurements. This will help guide the team during surgery and is considered a necessary diagnostic pre-surgical procedure.

Obviously, Kiel and I are terrified.. but we know that we are in the best hands possible. His surgeon is top-ranked on the east coast and is the head of cardiothoracic surgery here at CHOP. I have faith that everything is going to work out okay in the end... but in the meantime I am doing my very best to be strong for my little man. Alec has been such a little trooper. He's been poked, prodded, and stuck with needles... but he's handled it all like a little warrior. 

I just wanted to keep everyone informed. Thanks again to everyone for all the support. Lots of love to you all and please say some prayers for our little boy.