"I love you and want for you all things that make you happiest; and I guess you, not I, are the one who knows best what those things are."

Monday, October 7, 2013

The Good and The Bad

We have good news and bad news after another afternoon spent at Cardinal Glennon's Dallas Heart Center with Charlie. He had an echocardiogram of his heart and met with his cardiologist, Dr. Peterson.

On a high note, the valves in Charlie's heart are not showing as much leakage as they were 3 weeks ago. It is most likely a combination of the new meds he is on, Charlie getting a little bigger, and being further out post-op. Less leakage means that there is less pressure built up in inappropriate locations in his heart, so this is a positive all around!

Equally as exciting was Charlie's growth. He has rebounded back up to the 62% in weight (he had dropped to the 55%) by putting n over 2 lbs in the last 3 weeks. He's 12 lbs 4 oz now. His surgeon's preference is to do the Glenn on babies over 12 lbs - so we can check that goal off the to-do list! Now we won't risk having to "wait" on the surgery until Charlie is "big enough" (we wouldn't really wait - but they would proceed much more cautiously if he wasn't such a stocky boy). And with the improved weight gain came the OK to nurse up to 4 times a day! That's half of Charlie's feedings!!!

However, we did encounter some issues with Charlie's heart. His aorta continues to narrow. The cardiologist and echo tech were able to get some great pictures today (thank you Charlie for being still and pleasant during your tests!) which allowed Dr. Peterson to get a good look at the aorta. The narrowing is located at the end of the Charlie's surgical site. It is most likely a combination of scar tissue and build up from where the stitches have been. Right now his pulses remain pretty strong which is a good sign. His single ventricle isn't showing signs of distress from pumping against a small blockage. However, the nature of the beast is that it's slowly restricting the flow of blood out to the body.

Dr. Peterson and I spoke at great length about Charlie's cyanotic (blue) episode on Saturday. We went over saturations, activities, breathing patterns, course of action, results, and more. It's very likely that Charlie is simply struggling just a little to pass blood through that narrow aorta. Over the course of time - it caught up with him causing him to turn a little dusky and struggle breathing. We certainly don't want this to continue as a trend. We're under strict instructions to call the office any time we administer oxygen and to carefully monitor his blood sats over the next few weeks. She also reminded us that we may be practically quarantined during these germy months in an attempt to keep Charlie as sheltered as possible. Colds and congestion are not going to be our friends....

The answer to the narrowing aorta is to either balloon it open or place a stent in it. Both of these can be accomplished through a cardiac cath and the course of action would be determined once the cardiologist could see everything "live" during the procedure. Dr. Peterson would still like to make it to that 4-6 month window before we have to do the cath. But we also don't want to get tripped up on time frames when something needs to be done.

The battle plan for right now is to cautiously watch and wait. We return in 3 weeks for another echo and consult.

Dallas Heart Center Happy Echo

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