ECHO Results

Seriously was not happy. He just woke up from sedation in this picture.

As some of you read on our Facebook posts, Friday's ECHO was a bit of a disaster. We had pre-registered and paid our coinsurance prior to Friday morning with St. Mary's in West Palm Beach thinking it would speed the admission along. Not so much. Tristan had been NPO (nothing by mouth --food or drink) since the evening prior around 8:30 pm. Of all mornings, Tristan decided to wake up at 4:30 am. He spent the next 5 hours crying for water or something to drink. We arrived at 9:30 as ordered with the hopes it would happen quickly. We sat in the outpatient waiting room for 30 minutes before being called back into the examining area. Just as we were about to get the pulse ox on him, the lights went out. Fifteen seconds later the generators kicked in, but then the anesthesiologist refused to give Tristan sedation while the outpatient hospital building was working on generators. Long story short, he finally got sedated (took 4 of us to force the medicine down his throat and prevent him from vomiting it up) and had the hour long ECHO at 11:45 am. He got a very rude awakening with a needle being stuck in his arm as we were trying to get some lab work on him too. He finally got to drink water shortly after 1 pm and we were on the road home around 1:30 pm.

I got the result this afternoon. The ECHO looked fine. The Tricuspid Valve Regurgitation (TR) remains mild to moderate. No change. They had a hard time getting a clear picture of the "connections " (Superior Vena Cava to the Pulmonary Artery), but felt there were no issues. We were hoping they would stop the Digoxin, but the decision was to keep Tristan on it based on the TR. Blood work came back okay. Tristan's electrolytes were all within normal limits, but his liver enzymes were elevated. The cardiologist said this is a "normal" side effect from the heart condition. The liver is not getting enough blood flow so certain levels show elevated (liver enzymes). For the medical people out there, the AST was 75 and the ALT was 87. They also did a pre-albumin (looking at nutrition status) and it was 15 (normal is 22-40). The pro-BNP (Brain Natriuretic Peptide) came back at 223. The pro-BNP is not something to get too excited about. There really is not a lot of literature out there that says how this number correlates to children vs adults.

Next step? Ann called Miami Children's Hospital and is awaiting to hear back from them. We've been playing a sort of phone tag with the cardiology department. There was some question whether Miami would want to do their own sedated ECHO, but Dr. Debrolet said she would accept the latest ECHO and asked we have them send it down. We think we will have an appointment either August 17th or 24th. Remember, this is just so they can get a feel for Tristan. We have not seen the cardiologist there in close to 2 years. We want their thoughts on Tristan weight, heart status, and what they believe will be the timeline for the 3rd opem heart surgery. So don't think Tristan is in a crisis mode or that we are seriously worried about something. We are not worried ---but always concerned nonetheless. 

Between now and the visit to Miami Children's, we are eagerly awaiting a visit from G&P Johnson and Aunt Kathleen. I am sure it will be a fun week for Tristan to see his grandparents and aunt.

Thanks for reading and as always, we are truly grateful for your prayers.


Updated at 10:58 EST: 


Appointment at Miami Children's will be August 24th at 9:45 a.m. Will see cardiologist and then see the nutritionist there also afterwards.