Cardiology

Owen had another night of insomnia between one and four a.m. That didn't stop him from waking up bright eyed and ready for our cardiology visit with Dr. Stock. Of course he was in a great mood, chatty and showing off his new found communication skills. He was more than cooperative when the nurse had to get blood pressures on all four limbs, get his weight checked and his liver felt up. All the while, I'm telling Dr. Stock about his bad days. The days that he cries, sweats, is lethargic and feels awful. Days like today are wonderful, but there are days that are just plain miserable.

We put our heads together and we think it is a combination of things that are causing his bad days. The medication increase is causing his tummy to hurt and his blood pressure to lower, which makes him feel so crummy. Thankfully, we only have one more increase on the Captopril and we start the Carvedilol tonight.

We have an appointment with GI on Monday to hopefully get to the bottom of his tummy issues. I know the meds don't make him feel well and he's still on a 100% formula diet (with the exception of the few bites of solids he eats throughout the day).

We'll go back to cardiology on August 18th for an echo and another increase of the Carvedilol. Then again on September 2nd to max out his Carvediolol dose. By the time we get to Stanford at the end of September, we'll have done our job of maxing Owen out on all his meds. Please pray that this is going to work. Wouldn't it be fantastic to put off transplant for a few years?? I know that's wishful thinking, but very possible indeed.

Now, if we could figure a way to wean him off the oxygen leash.

How do you like Owen's new roll-and-roar dinosaur? I found it on craigslist for $5 and Owen loves it! Our house is turning into a toy store, so I'm off to take pictures and sell some of the bright plastic toys that just don't get the love they deserve anymore. But first I need to dig under beds, in closets and through drawers to find the missing pieces to some of the toys.

This train won't be one of them. Although his stubby little legs still don't touch the ground, I can't get him off of this train.

You're probably wondering what happened to Ms. Kamryn as she has not been present for the past few posts. She's off enjoying her summer with play dates, cousins, swimming, and now we're getting ready to start 4th grade (in 2 weeks). There are plenty of posts coming soon with my baby girl, who is growing up way too fast.