No Re-Admission for this Girl!

So I'm an idiot and I just realized I never updated the blog after our appointment last Monday! I get confused between updating both facebook and the blog!! Ahh! Anyways, we did NOT have to be re-admitted on Monday as her echo, x-ray, and EKG all came back perfectly clear! YAY!! Her cardiologist said she looks (and I quote) "perfect" and that there is absolutely no extra fluid in there. There is no doubt in our minds that that is a miracle based on how much she was draining when her tube fell out!! He said her heart is functioning just as it should, and everything looks great! We were absolutely thrilled to hear this news, and walking out of there after her appointment knowing we wouldn't have to stay was a totally amazing feeling!! As for care required at home, Kenzie is only on lasix twice a day and her usual aspirin. We clean her wounds once a day, but other than that, she is back to her old self!!

After being home for a week, she is just as sweet and happy as ever. In fact, I think she's even happier than before she had her surgery, if that's even possible! She runs around all day literally just laughing--it's the sweetest, best sound in the world to this Mama's ears! We're still trying to keep her away from large groups of people, but she's been able to have a few visitors and go to a few places, which she is loving! We even made a little campfire in our firepit last night and she was LOVING having s'mores for the first time ever! It is amazing that she had open heart surgery a month ago, because looking at her, you would never know it. We're so grateful for her continued health and every day is an absolute blessing! A lot of people have asked me, "so does this mean she's done for good?" The answer to that question is that we don't really know. She'll probably need heart catheterizations now and then for various reasons, but as far as more open heart surgeries, we can't really say. For now, her three staged cycle is complete, and Lord willing, this should last her a very long time. She'll just continue to be monitored and watched to see how her heart is doing! We'll just take it one day at a time and continuously praise God for all He has done for our sweet girl! Here are a few pics from being at home!

Checkin' herself out

After her appointment Monday

Goofy

Never seen someone so happy to be at the grocery store--freedom!

Yummy mashed potatoes from Big Shell

S'more faced girl!

Dancin' around

Happy girl!

HOME!!!

Well, we couldn't be happier to announce that we were able to come HOME yesterday!! YAY!! Praise the Lord!!! After a crazy turn of events, what everyone thought might be an additional week or more in the hospital turned into two days... and voila! Here we are at home!! We are certain that this was nothing short of a little miracle and an extra blessing from the Lord. I seriously cannot express how wonderful it is to be home, and it is very obvious that Kenzie is thrilled to be here and just loving every minute of it! Three weeks stuck in a little crib is a LONG time... especially for a two year old!

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!! ;)