Waverly is sick yet again. She started her day yesterday sounding really junky, and by the afternoon was coughing like crazy and getting lots of junk up. She was up pretty much all night coughing on and off, and even coughed so hard she vomited, which then leads to aspiration. She was in 3.5 liters of oxygen overnight just to stay at 90% saturations. She started her fever this morning but it's been pretty controlled with medication. She got a chest X-ray today and we are waiting on the call from the doctor for those results. Please pray for our girl. Her breathing is looking quite labored. We don't know that she quite needs to be in the hospital just yet but she is close to it.
We also need prayer. I often catch myself almost holding my own breath, as I suddenly don't know what's coming. I try to plan for all the possibilities, if she'll need to go to the hospital, doctor, what to do with the older kids, how to fit in work, etc. It's overwhelming. And then all the work to help her with each breath. Running at the sound of each cough to suction her. And then there's the lack of sleep. Listening to every sound she makes. Running to suction in the middle of the night. Cleaning off her vomit. And the husband that's not feeling well, that's got me worried. And my body is worn. And the trip that's coming this weekend with friends that I was so looking forward to.
And the Enemy starts whispering in my ear that it's impossible, too much, not deserved, never going to happen, and this pain and struggle is never going to end. I hate to see her suffering. I feel so helpless watching her chest work so hard to pull in each breath. It's hard to imagine that any thing or any one can be big enough to handle all this. But then I remember that His grace has carried so many through so much. And He promises that though dark the night and deep the valley, He has not left me or us alone. His grace through the love and support of others helps remind me to breathe, to walk, one step at a time.
Oh Cristen, I am so sorry. I just wanted to let you know i am praying for you. It does seem too much to handle. It sounds so overwhelming. My heart breaks for you and your family. I am praying!
ReplyDeleteJust be positive. We are also praying for waverly. I have strong feeling that things will get better soon.
ReplyDeletePls. also plan to take rest in between. All will be well.
You don't know me, I found your blog last week as I was searching the internet for others like me... my son also had Miller-Dieker syndrome. I just wanted to tell you that Waverly is so beautiful, and I'm sorry your poor baby is sick! I hope she feels better soon and that the Enemy leaves you alone for a very long time. I will be thinking of her, and you. Stay strong, mama. I know its hard <3
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