Today has been mostly about trying to hold steady. Her sodium levels were declining slowly and this got the night staff worked up on Thursday night. There was talk of moving her back to the PICU and inserting a central line to give her high doses of sodium. I was not in favor of this at all because the central line has a risk of forming a clot and this had been out of the question up until this night doctor saw her. Luckily the day staff came back on and agreed with me. We have been working on her sodium conservatively today and she seems to be holding steady.
We have had another interesting occurrence over the last 24 hours as well. She has been having intermittent episodes of pre-ventricular contractions (PVCs). They have her on a recorded monitor right now with someone watching her all night. This could be related to her sodium/potassium balance and all they are trying to do to right those. You can pray though that her heart hangs in there as we get things straightened out.
She was sleepy most of the day and didn't show real life until this evening. I think we are going to have days like this and I just need to get used to it.
The in-patient rehab lady came to visit me today and showed me around the unit. Maggie's doctors have estimated that she will be in rehab for 4 weeks after leaving the floor. My feelings when they were showing me around were very similar to my feelings when I was getting a tour of the Cardiac ICU right after her stroke. It is a nice space but I have no desire to make it mine. Four weeks is a long time and that was not my plan for my kids' summer. Yes I am having a pity party. It happens about this time each night and I will wake up with new energy in the morning. His mercies indeed are new every morning and I am counting on it.
Please keep praying for healing and a preventable diagnosis if God so chooses to grant us that information.
I love her so much. I was telling Trent tonight how I feel like there isn't enough of me to meet everyone's needs right now and how hard this is. His response was perfect. Looking at Maggie he said, "but look at what we have. She is so worth it." Yes she is.
5 comments:
" I feel like there isn't enough of me to meet everyone's needs right now"
brings to mind Philippians 4:19 - And my God will meet all of your needs according to His glorious riches in Christ Jesus. <3
Everything about her case seems so mysterious. Have the doctors consulted with Children's in Boston? I have seen miracle come out of that hospital as they are the best in children's cardiac care. Praying for you guys!
Praying for your beautiful daughter and family. Many blessings, Cindy
Praying for Maggie as well as you and Trent.
She is so beautiful, Ginny, that it makes me cry. Praying.
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