Share. Connect. Love.

Louis Ribbens - Journal

Read Entries & Updates

 

Posted 2018-09-28T08:53:37Z

A brief update

What started as pacemaker assessment surgery turned into a PICU admission. Louis is ok, but he had a rough start. When putting him under anesthesia, he did code. They were able to revive him to discover that he has very low hemoglobin and he is severely anemic. He was given a blood transfusion, and they continued with the heart cath to explore his coronaries, which look perfect (but have given us trouble in the past). So we learned his issue is not structural (no surgery), and because of the day's events, there was no intervention with the pacemaker.[...]

Posted 2018-09-25T00:30:00Z

August heart check-up


I'm never sure what to share so I'll start at the beginning with Louis' most recent heart check-up.
Louis had an appointment, August 29th, for his routine echo, EKG, and over all heart wellness check. As always, Louis laid perfectly still for his echo with our favorite sonographer, Jordan (he looks just like Dan!). He also shared with us a 3D print of Louis' heart! So amazing to see and hold. Pediatric heart surgeons are doing some really incredible and unbelievable work.
Then we had a visit with his electrophysiologist who tested Louis' pacemaker and assessed how his heart is using the device and he made a few adjustments to his battery usage and sensitivity. Once Louis' cardiologist arrived I was prepared to ask questions about long term risks and complications, as well as make a request that we remain at 6 month check ups. I'm not ready for annual check ups and I prefer quarterly checks, so 6 months was my compromise.
She asked the usual questions about Louis' behavior; how's his appetite/sleep schedule, stamina, development, etc. and then she told us that Louis' heart function has declined about 20% since his last check up in April. She went on to describe that heart function is the squeeze of the heart, it's measured in a percentage of how much blood is squeezed through the heart at each beat. A normal heart functions between 50-70% and Louis' function is at 37% (57% in April). This is a very significant and concerning change.[...]