Sherry was just about to strap Josiah in the carrier and head to MUSC for the pre-op visit with Caden when ENT called me at work to say the UES dilation procedure had been postponed until after cardiology could see Caden. We are not certain exactly why, but cardiology has put a halt to the ENT outpatient procedure. We suspect that cardiology is wanting to get a fresh reading on the pressure gradient across Caden’s aortic valve (AV) before signing off on any further anesthesia for even an outpatient procedure. Sherry suspected something fishy at our last cardiology visit, but didn’t make a big deal of it. The bottom line is that the cardiologist measured a much higher gradient across Caden’s AV during the last echo cardiogram six months ago. The cardiologist have told us since Caden’s birth that this outstanding defect would likely require an AV replacement in the future. Caden was born with as many as six separate heart defects depending on what you classify as a defect. He had an ASD, VSD, interrupted aortic arch type B, right sided arch, enlarged PDA, and bicuspid aortic valve. The last one was left untreated during his first heart surgery at six days old. The gradient back then was something like 52. The pressure gradient hovered inside the 50s for almost two years. Our last visit to cardiology in April 2007 showed a measurement in the 70s. Our cardiology appointment is not until the last week of the month. We will have to wait to see what comes out of that.
On a little bit lighter note, we probably would have canceled the ENT thing on Wednesday anyway. Caden popped a fever of approximately 102 this evening and his nose has been pouring green goobers.
On a much much lighter note, here is the video I promised.
Crying baby disclaimer: If you don’t like to hear a baby cry, then turn the volume down. Josiah has been having a period of about an hour of crying in the evenings. And no, picking him up, hugging, kissing, and telling him how much you love him does nothing. What we have learned is that he likes to sleep on his tummy once in a while. That’s it. Just roll him over and he is as happy as a pig in the mud. Yes, I know of the risk of SIDS. We only do the tummy sleep on a firm surface while we monitor him. He already has enough head and upper body control at 7 weeks to pick his head up and turn from one side to the other at will.
Anyway, about the video. I added a little caption to let you know why this is such a big deal. Caden has taken all of his nutrition and hydration by feeding tube since birth. The end of the video is a bit heart wrenching for us. Caden wants to eat and drink like us so bad, but his little body has just not cooperated with his desires.
Enjoy!
[youtube]http://www.youtube.com/watch?v=U122nxy__d4[/youtube]
If you can’t access YouTube then you can download a copy here.