Happy November! Here we are starting another month in the hospital. Super frustrating! I’ll start with the less good news and end with the happy stuff. Pulling that band-aid right off! 

The “Chest tube issue”  is still not cooperating. A lymphatic vessel was severed or nicked  during surgery so the lymph fluid (chyle) is still leaking into her chest cavity. She has a partially collapsed lung because of it. They’ve put her on a no (extremely low!) fat diet for a week and added an IV medication. Neither are working. So they will be having to do another procedure on Thursday. Similar to a heart cath: go up through vessel in her groin, inject dye and find the leak. Then glue and foil it closed. Voila! Sounds so simple but apparently it’s not. Only one doctor performs this surgery for kids and adults so we are just waiting on his schedule. Morale is quite low about it. Trying to sleep in a hospital is horrible!! And today is day 44 so we are mostly over being nice. In fact, the X-ray team who cruelly likes to come in before dawn found that out this morning. (They come in every day to check the fluid/lung status) I guess my look to them was as murderous as I felt at the moment. They suggested they could just cover me with a lead apron instead of making me get up and go out of the room. ?? Ceara is dreading the anesthesia part of the upcoming procedure the most. She had some reactions to her heart cath anesthesia last week and woke up feeling more miserable than she did from the open heart surgery. They’re assuring us that all of her levels are much more stable now and it shouldn’t be as hard on her. Ready to get this over with for many reasons! Today is day 16 post op. We were told we could expect to be out of here 7-10 days post op so it’s a BUMMER!!

We are still thankful for a God who’s still working to protect her and provide even through our pouting. We have SO much to be thankful for!! For starters, ZERO grade of rejection on heart after her catheterization results- typical at this stage was a 1 so that’s amazing!!  Some of those medications that were causing some miserable side effects are either being tapered off or stopped completely!! Her pain is minimal except for the discomfort caused by the chest tube. Mobility wise she’s doing great except again for the tube. Her scar is healing beautifully. Her PICC line is still working well- so no pokes or labs having to be drawn. All other lines have been removed. It’s still nothing short of miraculous the way she has healed and the things she has already overcome. 

She went trick or treating “with” us this weekend via FaceTime. It was my first time home in a few weeks. We loved seeing people’s reactions to be able to communicate with her. This blogging platform doesn’t allow photo uploads via phone or tablet which is all I have here. Maybe I’ll post a good gallery of the last couple weeks when I’m able. All of the love and support from our community continues to astonish us. I’ve always felt blessed by my little village but it’s grown exponentially and we continue to be showered with blessings. 

So I close by saying again how fortunate and blessed Ceara and our family is. We don’t take a single second of it for granted. But we ReAlLy look very much forward to all being home together again. Please say a special prayer for her that Thursday’s procedure does the trick. 
-Ashley