I just waved goodbye to my beautiful little girls as they pulled away in their fancy black limo (aka, towncar with tinted windows). Addie wanted to know if it was the kind of car they didn't have to buckle up in. Ha! Don't they know I would make them sit in the front seat of the school bus wearing a seat belt if I could? It was wonderful having them here this weekend, even if I did feel a bit stretched. A piece of my heart broke when they drove away, and my next task today is to book their next trip down here, hopefully in two weeks.
Oh, you probably want to know how Isabella is doing. As much as the updates on MY emotional status is what everyone is most interested in...
Bella's new liver appears to be doing its job. Her ammonia is down to 39 today, her PT is improving, and her LFTs are down. Now, if that means anything to anyone, let me know. Actually, it is all great, and shows that her liver function is good. She is being a bit challenging with the sedation, she has been a bit tachycardic and her BP has been up, requiring extra sedation and paralytics. The good news is that those are doing their job, and her BP was much better overnight, and her heart rate is a bit lower.
The next question is whether they are going to close her belly today. Yesterday Dr. Bond was a bit skeptical about whether they would be able to or not, whereas Dr. Soltys thought the day before that they definitely would be able to. It doesn't look like they will be able to close the muscle, regardless, which means that she will have to have another surgery in about a year or so. We had been really hopeful that they would be able to do it now, but we are rolling with the punches, and will simply be happy to have her belly closed.
Though you obviously can't tell, there was about a 45 minute pause there in my writing while the surgeons came and changed her dressing. They checked out her incision (aka gaping hole in her abdomen), and decided to wait to close until tomorrow. They stitched the covering together a bit tighter to pull her skin closer, hoping that will stretch it a bit to make closing tomorrow easier. After they finished her dressing change her leads failed (the sensors that monitor her heart rate), and it looked like her heart was stopping. It was only about 20 seconds or so before we figured out it was the leads, but I honestly think my life was just shortened by about 20 years. Thank God Steve wasn't here, because he would have dropped dead of a heart attack on the spot. Sometimes the monitors cause more damage than they prevent, I swear. I gave Bella a VERY stern lecture about NEVER doing that to me again, and hopefully she will behave a bit better today. That or she will end up in timeout for the next 35 years.
So if all goes as planned, they will close Bella tomorrow. That means that they will be able to start weaning her off the ventilator, and that puts me that much closer to holding her in my arms. Hopefully that will happen this by the weekend. I may drop off on blog posts at that point, as I don't think I will be able to put her down in order to type for a few days. She is so beautiful, regardless of the tubes and hoses, and I can't wait to have her blue eyes smiling at me again.
I think you should write a book on how to have strength and grace during challenging times. I'm so glad Addie and Lily got to be with their Mommy, Daddy, little sissy, and Mimi this past week. And now they can start the count-down to their next visit. Your girls are so blessed to have you and Stevie and all the love and support they recieve from our extended friends and family. Love you! Katie
ReplyDeleteHi Courtney,
ReplyDeleteI am so glad you had a wonderful time with your beautiful girls! I am SURE they enjoyed it too. I am especially glad they got to see Bella.
Medical terminology: I think PT stands for Prothombin Time, how long it takes blood to clot. LFT is probably for Liver Function Test. It is wonderful that Bella is doing great all around. It doesn't surprise me though, she is SO strong!
Every day is a day closer to you ALL being home together. Woo Hoo!
oooooooxxxxxxxx Reney :) TGIT