BNP blues

We just finished Mac's clinic appointment. His BNP is higher - again. 2800 now. Normal is 0-100 and his was 600 12 months ago. It just keeps going up and is a test that indicates heart failure and how much fluid is body is battling. It fluctuates and we really want it to see it drop. His heart function doesn't look improved so his team here is sending all results to Boston. We are planning a trip up there in February so Macsen can have a 3D echo with Dr.Marx and his electrophysiologist can also take a look at his pacemaker. We will also meet with Dr.Blume, the heart failure doctor. This will be the 6 month testing after his pacemaker to see if it is actually helping or if it isn't. It will tell us if we need to list him for transplant which I desperately don't want to do. His kidneys aren't too happy lately - the multiple diuretics he needs to manage his heart failure hurt his kidneys. He defnitly is more irritable and has less energy to do even the simple things like put on socks and shoes himself.
Instead of rushing back to Enterprise after our appointment we were able to spend the night in Ronald Mcdonald house. It is always wonderful to meet other families with medical kiddos and it never fails to humble me on what our family has endured compared to others.. We met a mother who has 2 special needs kids and who lost everything in the hurricane that destroyed the gulf coast. Here I am complaining about some minor flooding in our house and they lost it all. And had 2 little ones that needed to be in the hospital at the time.
We will be spending Thanksgiving in a cabin my sweet sister rented for the holiday. We hope to spend lots of time together hiking and cooking and eating and making crafts.

Peanut Festival

Special citizens day at the National Peanut festival. Unfortunately all the fun was cancelled bc it rained early in the morning and there was no plan B or C for all the kids bussed in. But Mac enjoyed the giant Pnuts and sprite I bought him. 

Fall Festival

Macsen had fun at his school's fall festival - though he was anxious to go run around hence his scowl in this picture. He especially liked the hay ride!

3 months post op

3 months post op and his 3 incisions look so good. No more pain in his shoulder. o more pain in his belly unless he hits his pacemaker the wrong way.