Hope you had a good weekend. I can’t believe that I haven’t updated anything in a week. Some moments it feels like the week was long, others makes the week seem like it passed in a flash. There were a lot of news, no news, news, no news ups and downs. Madeline is doing mostly well now that they have her lung infection on the run and her back on her diuretics.
Seems like mostly they just got behind the ball with her diuretics and her lung infection last week and that’s what caused most of her ups and downs. Now for what happened this week. We had an MRI scheduled which got pushed back a few times. Finally after the MRI was completed we waited for results that they told us wouldn’t come for a week or two and finally came the next day.
Madeline’s heart looks ok, the left side is still small, but growing and adequate they feel for her. There are still 3 holes in her heart, two in the bottom of her heart between the left and right ventricles and 1 larger hold in the top of her heart between the left and right atrium. The pulmonary band is doing its’ job of restricting blood flow to the lungs and encouraging more flow out to the body.
The main problem now is the hole between her atria. It’s letting too much blood across and back into the lungs. She also has a paralyzed left side of her diaphragm which isn’t allowing her lung to fully inflate and this has it partially collapsing. The surgery on Monday will be to placate the diaphragm (sort of pleat it and tie it together) so it stays down and doesn’t flop around.
The diaphragm muscle is fine, it’s just the nerve controlling it isn’t working right. They expect that nerve to fix itself over time and for Madeline to regain full function in her diaphragm. They have decided to do this ahead of the heart surgery with the hopes of getting her lungs in as best a shape as they can so she’ll have a better chance of surviving the heart surgery.
They will also insert a g-tube (which sounds cooler than gastrointestinal tube). This is for feeding her, it goes right through the skin to her stomach rather that the nose tube she currently has. They don’t really think she’ll need it long term, it’s just better to get it in now while she is already getting surgery rather than have to do another surgery later if they need it.
The surgery is scheduled for 10:15 tomorrow morning. Although it sounds simple, this is major surgery for Madeline and will have a certain amount of risk associated with it, and like good parents, we are scared. Please pray for the surgeons working with her, pray for a successful and minimally invasive surgery. Pray that Madeline tolerates it well and recovers quickly. We’ll try to keep you updated as things progress.
Shanker & Lisa.