Tuesday, June 30, 2009
I am not a doctor.....but I should be
Post-cath...woo hoo, Alex did great! he was pretty funny going in. They gave him some ver-sed...it makes him kind of drunk/high...he was all smiley to me and Charlie but he was still glaring at anyone wearing scrubs. It was like they were bumming his trip. He did great in the cath., mostly b/c DR. Dan is the shit in the cath lab...super fast and got it in the vein on the first try, and the anesthesiologist only needed 2 pokes to find a vein that wasn't jacked so HIP HIP HOORAY for them. After Dr. Dan showed us the pics and the video from the cath...if someone had told me a few years ago that all of those SAT words would start to become my regular vocabulary I would have laughed but I am finding them very helpful in the hospital. We found out a bunch of stuff that I already knew...but I think it makes Charlie feel better to hear it from the doctor...Alex's pulmonary arteries have grown...alot...they used to be teeny tiny and now they are just a teeny bit smaller than they should be. Also the "non compacting" left ventricle is pumping better than the last time they looked at it...which I knew because I sit through an echo every month and yes, i do pay attention. Then we just shot the shit for a few minutes..baseball...blah, blah,,Mike Mussina used to cheat off him at Stanford...WHAT???? Talk about random info. Then Alex came out of the lab and into recovery. He still had his little hospital gown on...a little girly...he kept yanking on it..it was definitely in the way. Grandpa (blood donor) had to do the entertaining because Charlie and I had to go meet Dr. BR, heart surgeon, and all around genius (at least that's what we're hoping for. He was very nice...Charlie likes him, which is a fucking miracle...he is REALLY young for a heart surgery chief guy, but that's what we want...a guy who is gonna be around for awhile cutting into little hearts cuz Alex is no done having surgery yet...a couple more in a few years. So he's talking....gonna do this...cut that...snip...fold...sew...STOP HIS HEART...whhhhaaattttt? I'm sorry did you just say stop his heart???? Why yes..yes he did. Soo after Charlie finally started to breath again Dr.BR started telling us the risks...bleeding...brain damage...3-5% chance of death...whoa...5%? His stupid tummy button surgery had a higher chance of death, so I'm still ok on the risks. Then he tells us that 10 years ago no one would have touched Alex...no surgery...no options....Ebstein's Anomaly = death. So now I'm gonna focus on the next 10 years....first Thursday (Glenn, Starnes, RA Reduction)...then the Fontan in a few years...and possibly that's it, or a transplant...but in 10 years...who knows. I'm hoping that if he has to get a transplant it'll be cool...part heart, part ipod...when we drive up to the house he can bang on his chest one time to open the garage door, something useful. Tomorrow is a resting day...nothing to do except hang out, nap, and eat...all to prepare for Thursday.
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Hi Sam...you don't know me, but my husband, Sal Fasano, has played against Charlie's teams, probably for years. I am sorry if I am overstepping here... but I wanted to reach out to you. Your family has been on my heart since I hear the news about Alex in 2007. I found your blog on a facebook link. Sal was playing for Syracuse the year your little Alex was diagnosed/born...sorry, it is a blur to me. I can't remember if Sal said he got a chance to talk to Charlie that year or not, we/he were pretty self consumed with our own diagnosis at 22 weeks pregnant. Our son was born a month earlier than Alex with a very rare heart defect, hypoplastic left heart syndrome. He was born with a 3 chamber heart and a non functioning aorta. The doctors also said 20 years ago, there would have been no solution, just a few days with him and that's it. As I read your blog the surgeries and caths are WAY TOO familiar. Santino has had the Norwood surgery, Glenn surgery, and is due for his Fontan this Sept/Oct. (Familiar terms, huh?) I don't want to ramble on, but I wanted to let you and Charlie know that you are in our thoughts and prayers regularly. It is amazing how our little boys are such big fighters!! It is crazy how this changes life, but it definitely does. If you want to talk any more my email is k.fasano@sbcglobal.net. Please tell Charlie, Sal says hello.... and thanks for taking the time to blog and read this...I never blogged, and as I look back, I should have...
ReplyDeleteKerri Fasano (Sal - AAA Rockies)
Dear Sam and Charlie,
ReplyDeleteI've been checking each day awaiting updates on Alex post-surgery Hope things have gone well and that I will be seeing him and you both soon back in Tucson. Give Alex a big kiss from me and a hug to you. You are all in my thoughts and prayers....I know, I know Sam, but you are.
Marilyn