Caden had a regularly scheduled cardiology appointment. We are almost 10 months post Fontan Surgery and at today’s cardiology appointment Caden did awesome. He took x-rays like a champ, sat still for all the listening to his heart and did great with the unexpected EKG. Even pulling off the stickers from the EKG, which we know is painful he stayed tough. We think Caden now understands that x-rays, blood draws, EKG’s and the like are part of his normal and he knows crying or complaining wont make it stop. He is a tough guy.
The chest x-ray “looked great” and was clear. His saturation level is at a great 95 % which we were happy to hear. Dr Peter indicated as long as his sats are in the 90’s he will not push to have the fenestration closed. They ran the BNP (B-type Natriuretic Peptide) number which is how they track if the heart is approaching failure. While the BNP number was 18 back in November and it came in at 79 this time, Dr Peter indicated that heart is not considered in any type of failure until the BNP number reaches 100. We discussed these numbers quite a bit and Dr. Peter indicated that the number can fluxuate and if we ran it in two weeks time it could be back to 16. We will see.
Now the news we weren’t counting on.… Dr. Peter Frommelt heard some irregular heartbeats. Through listening he heard one out of every ten beats was irregular so they ordered and EKG on the spot to learn more. The EKG showed no irregular heartbeats however we need to learn more.
Caden was sent home with holter monitor to wear for 24 hours . This monitor is hooked up to 5 leads on his chest and will monitor every beat of his heart for 24 hours. Caden does not mind wearing it and even woke up last night afraid he lost his “computer:. The results from this monitoring will give them a better idea what is going on. Dr. Peter said sometimes this occurs after surgeries due to scar tissues on the heart. At this point a new medication digoxin is being added to his Enalapril, Warfarin, and Aspirin to help his heart function. We will know more information in a couple of weeks after they analyze data. Then in June another Echo of the heart will be done. Please pray the irregularity it is nothing and can be controlled by medications. Also, please pray for a low BNP number.
Caden has been otherwise been very healthy, doing great and now up to 32 pounds. He absolutely loves playing in the snow and would stay out there all day if we let him. He has been doing lots of sledding as of late. We have had some wonderful snowfalls that he has been able to play in. He finally got to build the snowman he had been talking about since winter started. Monday 3-11 we will celebrate Caden’s 4th birthday. We have been blessed.
His brother Griffin is now 30 pounds catching up quickly. We have a scheduled surgery on Tuesday 3/12 for Griffin to remove a dermoid cyst in his nasal bridge (that he was born with) by the same ENT that placed his ear tubes. He had an MRI months ago to ensure this cyst was not connected to brain tissue (which it is not) . Apparently these types of cysts can become infected and the younger he is when we do this the less likely it will scar. Unfortunaetely, Griffin has gotten sick (another ear infection since tubes have fallen out) and we aren’t sure if it’s the Rx for the ear infection is causing him to get sick or he has a stomach virus. Really hoping he feels better so we can proceed with surgery.
Love always -