After our last post, Kenzie was still going strong with her draining, and was showing no signs of stopping. Her new tube which had been placed in her right side to remove air had done it's job well, and no more air remained on that side. That tube was still draining a small amount of fluid, but nothing compared to the center tube, called the mediastinal tube. This one was consistently draining 3 to 4 times the amount they would like to see before removing it. And let me tell you, that is no small amount! She was draining 120 ml's per day, when the desired amount was 30 ml's. Every time the docs would come by in the morning, they would just say, well, it's still going strong---hang in there! Talk about a bummer!
On Wednesday of this past week, my mom and I wanted to take her for a walk. We took her out of the crib and put her on the ground, and all of the sudden, her mediastinal tube just fell right out of her belly! This isn't something we would ever expect as these things are sown in, and when they are removed it is quite uncomfortable and painful. She didn't even seem to notice, and didn't show any signs of discomfort. At first we were totally freaked out, but the nurses did a great job of quickly patching it up so that air and infection couldn't get in there. After the initial surprise, we were pretty bummed because we knew that this would set us back even farther. She would have to get a new tube placed, which would take us down the whole route of not eating for awhile, sedation, procedure to place the tube, sleeping off the sedation, growing accustomed to the new discomfort, and trying to get her appetite back up after being on the pain meds. And then after that, she would just continue to drain as before. At least that's how we thought it would go.
The doctors took an x-ray of her chest later that night, so that they would know where the fluid was accumulating to place the tube. Yet when the x-ray came back that night, there was no fluid in there. Huh? Based on all that she had been draining, she should definitely have had a decent amount of fluid in there. Over the next two days, they continued to watch for signs of fluid accumulation (breathing hard, low oxygen saturations, puffiness, elevated heart rate, etc), but she showed none. She had her right chest tube pulled on Thursday, and subsequent x-rays continued to show absolutely no fluid. They also did an echocardiogram on Thursday which also showed no fluid accumulation. That night, when they told us if Friday morning's x-ray came back clear, we could go home, we just couldn't believe it! There is no doubt in our minds that God knew it was time for that tube to come out and so out it came and BOOM--no more fluid! Friday's x-ray showed absolutely no fluid and no air, and home we went!
I wish I could express how amazing it was to be able to pack up and take our peanut home! Especially knowing that her staged surgeries are OVER and that she's doing so well. This is something that's been hanging over our heads literally for three years, and it's SUCH an incredible weight off of our shoulders. We're still not completely out of the woods, as we'll be going back on Monday for an x-ray and cardiology appointment to see if she continues to remain fluid-free. We were told it is very possible that we might be re-admitted if it shows fluid has re-accumulated. If this is the case, she'll have to have another chest tube placed, and we'll be back in. Fortunately, she thus far hasn't shown any signs of respiratory distress and we'll just continue to pray that we get the "all clear" on Monday. I was told to pack a bag just in case, but we're definitely praying that isn't necessary--especially for her sake as I think that would be really traumatizing for her to have to go back in. And for us!
Since being home, she has just been on cloud nine. She's running around, dancing, laughing, and totally back to her happy-go-lucky self. It is the biggest joy in the world to see her so happy, and to know that she is DONE!! Cannot thank the Lord enough! I'll update on Monday after her appointment. Lord willing, we'll be in and out and back home! We'll still be in seclusion mode for awhile, as she still has open wounds from her chest tubes and is continuing to gain strength and recover completely.
We can't even begin to express our gratitude for all of your prayers, messages, meals, gifts, and overall support that we've received over the past few weeks. We are truly blessed beyond measure with INCREDIBLE friends and family! Love you all!! There's NO WAY we could have done this without all of the help we've received. Here's a few pics right before we left... someone was happy to be going home!! ;)
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