desat again

Stopping by to update all of you as I'm sure you are wondering how our little sunshine is doing. Ella is doing okay, she is still not where we would like, but not bad enough for a hospital visit. Her heart rate hasn't been way too high since that one day when I last updated, it is maybe slightly high, but totally fine. Ella's oxygen it low, but for the most part staying between 80-85 so it has certainly been worse and we are thankful for what she is getting.

Ella did have a desat episode yesterday evening and her oxygen dropped to 54. She handles it very well usually just out of breath and sometimes pretty blue, but she was singing and didn't even want to hold still for me to monitor her. I am beyond thankful for her ability to love life despite what her body must be feeling with nearly half the oxygen she should be getting. The thing about this episode that concerns me is that usually they last 5-10 min at the most. This one lasted right about 30-35 min. It took quite awhile for her body to bring up the numbers. As you can imagine that is hard to watch, especially when the hubby is at work, thankful for "survival mode" that my body has learned to click into despite my own racing heart and shaking hands. It's obviously important to stay completely calm but also to respond according to the situation, it usually looks something like this.

 I think to myself "Ella looks a little off, I bet her sats are low, I better get the monitor, thank goodness she looks like she feels okay," I then ask calmly for a "good finger" to check and Ella pops a chubby often blue finger in my face and I praise her for her quick obedience. As I wrap the sensor around her finger she might start to wiggle and decide that she doesn't feel like holding still right now, in the meantime my heart is racing and I'm thinking "I need to get this now! What if it's really low this time?" reminding my self to use calming tones as I convince her we need to do this right now, she usually bargains with me by saying "I neeeeed Danial Tiger's Neighborhood on momma's phone" I smile and say "okay" She then holds still and I stare at the monitor waiting for the numbers to appear "this feels like forever, come on!! Why can't I get a signal?! God, please help it be okay" Then finally the numbers pop up and the alarm starts sounding to alert me that my child's oxygen is far to low "I start to feel panic in my heart and remind myself to hold it together, this happens all the time and she always comes up, give it a minute. What if this... NO! Amy don't go there, look at that smile" I sometimes start to cry a little but I manage to keep it calm. "Call Jon, stay calm, you're doing it, good job! Get the stethoscope, listen for arrhythmia's, what a beautiful sound, gosh it sounds fast, but it's okay. Cherish the sound" I close my eyes and try to hold in tears as I listen to what I would describe as a perfect heart. I look at the monitor "Why aren't her numbers coming up yet, dang it! this is too long, what do I need to grab for the ER, wait it's up a little, please please Lord help her, I can't take her to an ER the germs could kill her! I need to shower, really Amy? You think you will care if you had a shower if you are in the ER with her? Why is this happening while I'm home by myself?? Give Jon an update, it's moving in the right direction, my word time is flying and creeping at the same time. My eyes hurt from staring at this screen, I hate CHD's I hate HLHS, this is NOT fair, I hate that she has to go back, another open heart surgery, Finally her numbers are getting higher, I guess that's pretty close to her current normal, why does it still feel to low? oh, right, because it is. What is going on? I wish we could figure it out!! What are we missing? Time to take of the monitor Amy, you can check on her whenever you want, it's been 45 minutes." I let her up to play.

 I realize that it's true, sometimes ignorance is bliss. She was just as happy and playful as before. I remind myself that I have to keep it together, I have to trust God, I have to keep going, this wasn't the first desat and it won't be her last, It could get much much worse like before when it was more then 10 times a day. God has walked us though a lot, my fears are not too big for Him, He isn't scared away by the heaviness of all we have to face. Thank goodness for that!

Please be praying for continued health during the flu season, please pray extra special for Ella's heart friend Emma, she has tested positive for RSV an extremely hard virus for a heart baby!

Please be praying for Ella's heart to be strong for her lungs to be strong, for her oxygen to stabilize, for us to be able to push her cath surgery out of the flu season if at all possible, For wisdom for her team of doctors to know what is going on and for us all to know what step to take next. Ella has had 6 heart surgeries, 3 open heart, and 3 caths. We know she has at least 2 more in the near future. We are trying to focus on today, on this moment, We love our little girl more then could ever be put into words. This never gets easier, but God is faithful. Thank you all for the prayers!

 

She decided that a bucket was a suitable hat, I agree!