Aaargh matey! I love this picture of Asher! Cracks me up everytime I see it.
Well, our gut feeling that Asher isn't doing well was confirmed today. We met with Dr. Puchalski this morning. Little Asher isn't doing well because his heart function has decreased; a result of the leaky pulmonary valve. So, rather than doing an MRI in October, which will just tell us what we already know, we are going to schedule Asher for surgery in September and have an echocardiogram done beforehand.
Surgery will be open heart again, done here at Primary Children's. They will be replacing the conduit and valve which were placed at Stanford. Recovery should take 3-5 days. Then, we will try to piggy-back his skin graft surgery on the same hospital stay. Unfortunately, it can't be done at the same time as the heart repair (they use different anesthesia for it).
How are we doing with all of this? Quite frankly we are relieved. We've known since April he had a severe leak, so it was just a matter of time before he needed surgery. And for quite a while now we've known things weren't quite right with Asher. So, we put our trust in the capable hands of the surgeons, and look forward to Asher feeling much better after he gets his heart repaired (again).
In the next day or 2 we will be getting a call from cardiology to schedule surgery and the echo; I will post again as soon as we have a date. Hopefully it doesn't ruin Jon's birthday again this year! We already have tickets to take him to the circus on the 22nd; a surefire way to have our plans messed up. We love our little Asher, but he has a thing for birthdays! He was born on mine, had his first surgery on Taylor's, we left for his second surgery on Jon's, and he cut his finger 2 days before Jacob was born. We are crossing our fingers Jon gets to enjoy his birthday this year with his whole family!
In other news, Asher woke up from his afternoon nap today running a fever, and he was very lethargic. He had zero interest in anything other than sitting on daddy's lap. So I called his pediatrician, and he agreed that I should bring him in. So, after checking Asher out, he discovered little red bumps on his feet, then his hands, and in his mouth. They were literally appearing as we were sitting there. Yep, hand-foot-mouth disease. You've got to be kidding! Asher is now on quarantine until this clears up. Yuck. Okay, off to take care of my grumpy little man.
Just a heads up my little Connor also got a rash but it was the German measles maybe it's going around it starts with a fever then the rash last 3 days plus maybe double check on it !!!! Asher will be in hearts and prayers for his up coming surgery
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Ivy
Good luck James family. I too hope someone can get a good birthday this year! Take care of that rash and try not to "share" it with everyone else in the house.
ReplyDeleteHello, my name is Lara, and I just wanted to let you know that I recently found your blog. I hope you don't mind me reading it. My husband and I found out this past week that our 35 week unborn baby has TOF. I am trying to connect with other families as we begin this journey of dealing with a child with a CHD...
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