Cardiology Appointment

I admit it. I was nervous. Very nervous. I had a strange sinking feeling that cardiac wise, things have been going too well. We made it through the cough and cold season without a hospital admission, no recent ER visits for Evel Knievel imitations and acid refux appears to be fairly under control. Our "normal" has been just that; normal. So really....something has to go wrong, right?

Plus, Dr. Sharron always refers to Gene and I as "one of the nicest set of parents ever", so really....T needed to blow that facade and give her more accurate adjectives like "naive", "foolish", "inexperienced" and "out of their minds". 

BUT.....

TRISTAN DID GREAT!!!

This was the first visit in about 2.5 years that we got a 12 lead EKG done without him screaming bloody murder through it. For once it was ACCURATE. His weight is 31 lbs (diaper and shorts on only) and his height standing is 35 inches. We also got a blood pressure of his arm AND leg. Got his O2 sat of 84% while being calm. Yes, he did whine and cry a little with the sticky lead pads and he did not appreciate having his heart listened to, but he calmed down.  He even "talk" to Dr. Sharron and calmed down enough to play while we talked with her about how T was doing at home. 

AND THE BIGGEST SUPRISE??? T was so cooperative we got an echocardiogram done today in the office. He did sooo good.  He laid there for 20 minutes with the help of Gene and I keeping him calm. He whined every once in a while but for the most part he laid there and allowed the technician to get her "pictures".

We had to add the autism diagnosis to the chart since the cardiology office had not seen us since January. This came up because there is always the question of normal development and hitting appropriate age related milestones. Dr. Sharron guessed that his autism might be on the milder side since he appeared to be socializing with her and calmed down fairly quickly. Do we mention how much therapy (ST/OT/ABA) it has taken to get him not to have a screaming nervous breakdown in an MD office??

So the Fontan timeline question....

T appears to be fairly stable. He is gaining weight, color looks good at rest, O2 sats are above 80%, and is active. Right now Dr. Sharron feels we should hold off at least for a year...maybe longer depending on how T does. The echocardiogram showed mild-moderate Tricuspid Valve regurgitation and really no change. She did voice some concern or maybe added thoughts regarding T and the Fontan. Dr. Sharron said she sees regression in behavior post Fontan in most of the children. So whatever gains he makes over the next year with speech/language, increase of accepted foods and textures, potty training and etc, will take major steps backward after the surgery due to the psychological trauma of open heart surgery. She thinks the older we get T, the less regression and PTSD we will see. The hope is that we will be able to explain things more and fearing less. So the Fontan could be 1-2 years away.....it all depends on T's heart and how long it can handle this circulation.

As we were leaving, she wanted to do another pulse ox reading. T was running around the office playing (seriously, that is how calm & happy he was acting). After running like a madman, his O2 sats were 75-76%. Since they did not dip down below 70% with him breathing hard from the exertion she was happy with it. She does plan to let the Cardiologist at Miami Children's know just in case they have any concerns.

So, next Cardiology visit is in January 2014. Yippeee!!