The first days post op were honestly a lot better than we expected. It is always indescribably awful to see your precious little one go through something like this, but compared to her last surgery we were pleasantly surprised at her initial few days in the ICU. Last time around, you could definitely tell she was in a lot of pain following surgery, but this time she seemed much more calm and sleepy. Not to say punkin hasn't had to endure a lot, but it has for sure been a pleasant surprise and answer to prayer! Of course it wouldn't be an official hospital stay for us without something happening to scare us to death, but fortunately this time around it was quickly assessed and fixed. Her second night in the ICU she woke up screaming her head off and shaking so violently she was convulsing. Obviously we were beside ourselves and thinking she was having more seizures which could mean another stroke. After trying to calm her for about a half hour while the nurses checked her out she snapped out of it and became responsive again. Hearing her say "wuv ooo mamma dada" was the best sound I have ever or will ever hear again!! We think it was kind of a combination of a crazy night terror, and then waking in a scary environment and being completely terrified. :( Ryan was sitting bedside at the time, but she couldn't see him. So we fixed this problem by having me sleep in bed with her. As I write this right now I'm sitting next to her in a baby crib as she snoozes--it's not weird or anything! ;) Besides one other little mishap, most of our time in the ICU went very smoothly. The staff there is absolutely top notch and they took phenomenal care of our girl! We can't say enough about our surgeon who we LOVE LOVE LOVE and the awesome staff at the hospital! SO blessed to be here!!
Yesterday we moved from the CTICU into stepdown, which is great news. Her biggest issues now are her continual draining of fluid, her fear of doctors and nurses, not being able to eat or drink anything, and not wanting to take her meds. She still has both of her chest tubes in and is draining a lot. She has a bit of fluid on her right side, which is the side where her chest tubes are not placed, so if this grows she'll have to get another chest tube. Please pray this doesn't grow as that's just one more thing she doesn't need!! She hasn't eaten really anything since her surgery and has thrown up what little she has eaten. This could be because her pain meds were possibly making her nauseous and then her stomach just isn't used to having anything in it. She was just weaned off of her major pain medications and is currently just on motrin for anti-inflammatory, lasix for fluid, tylenol as needed for pain, and some stuff for her tummy. We think this is pretty impressive--three days after having open heart surgery and she's only on tylenol--which she hasn't even taken yet! I take that when I have a little headache.... ;) Anyways, we are praying that she will not feel nauseous anymore so that she can eat and hold some stuff down. As for overall pain, her chest tubes don't seem to be bothering her too much, but she hasn't really done anything other than lay down or sit up for a few minutes. Hopefully she will continue with that pattern. The downside of being a two year old in the hospital is that we can't explain anything to her, so she's just terrified every time a doctor or nurse even approaches her bed. She either screams or closes her eyes to make them "disappear." Even the therapists who come and bring toys and don't even touch her totally scare her. She also hates her medications and it's torture trying to get her to take them. Prayers for her to begin taking her medicine willingly and to not be afraid of the doctors and nurses would be much appreciated!
It is SUCH a blessing to see her sweet, happy little self coming back. She's sort of lethargic and tired a lot of the time, but after she's had a good nap, she's been playing and having fun. She's certainly been spoiled by family members as she has more presents than she knows what to do with! Too fun!! And Grammy, aka "Me," is here to take great care of both her and us! We LOVE the sound of that sweet little laugh as she plays and as Ryan does goofy stuff to make her giggle! God has been incredibly gracious to us throughout this whole process! Praise the Lord!
It's an amazing feeling to be on this side of surgery number 3--something we've had hanging over our heads for 3 years. Now all we have to do is get this little girl eating and drinking, and get all of this fluid out of her. We're not expecting to get out of here anytime soon, but hey, God can do anything! As always, your prayers and messages mean the world to us and we are SO thankful for you all... and for your love and concern for the Kenzinator!
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