Monday, October 27, 2014

Love my Precious Izzabug


Elizabeth had a little rougher day yesterday. Her oxygen saturation levels started dropping. She dropped as low as 77 but will come back up to 98 with increased support. They think its because of the extra fluids she had to get to help get her blood pressure stable, that Elizabeth's lungs are too wet now. This happened often during transplant, where she needed extra fluids, and then ended up getting out of balance. So it will just take some time to get her fluid levels back in balance, she was started on diuretics to help with that.  So all night her oxygen saturation has been up and down. They have had to adjust her ventilator settings some and as her oxygen saturation fluctuates they have had to adjust the amount of oxygen she gets. So its been up and down a lot.   Her sedation meds were also increased to help keep her calm. They were able to start feeding her a small amount of her regular formula through her feeding tube in addition to giving her TPN (IV nutrition) yesterday. Her blood pressure has been decent and they have been able to get the dopamine down to very low settings and even turned it off earlier this morning but are still watching her blood pressure. She had an echo on her heart this morning so we will meet with Cardiology here at some point to discuss what it shows, I don't expect it to be much different than her what we saw in Texas back in April.  She is still opening her eyes every once in a while, and I feel so bad for her. I hate that she going through all this again, but I know they are taking great care of her here.
I am very thankful that alot of the nurses, resp therapist and all of the doctors in PICU here at home remember her from before transplant. They have been great about answering our questions and doing the very best to care for Elizabeth. We have also been beyond impressed with how great our transplant team from Cincinnati has been as well. They have been in contact with the PICU and with us daily, to ensure we felt comfortable with the care she is getting and to answer any questions or provide any assistance we need. Matt and I have been taking "shifts" at the hospital I stay at night with her and he stays here most of the day. That way we can also spend time with Charlotte. I feel so bad for her, I know she misses Elizabeth and doesn't understand what is going on. Our families have been great about helping out with watching her and sitting with Elizabeth when we need a break. We continue to be thankful for your prayers and support. Elizabeth is a little fighter, and will overcome this!

I also wanted to share something, a few weeks ago Matt and I attend a marriage retreat at Winshape in Rome, GA. One of the songs that was played while we were there reminded me SO much of Elizabeth and her fight, and of how I have had to learn to have faith. I was crying so much while it was playing, and I just knew people thought I was crying because of my marriage ;) But it was because I kept remembering all Elizabeth has been through and all she may still have to endure. I really think God placed this song to be in my head and on my heart to help prepare me for this dip on the roller coaster ride of Elizabeth's journey. I have played it for her a few times while we have been here.
 Blessings by Laura Story:  https://www.youtube.com/watch?v=1CSVqHcdhXQ

2 comments:

  1. Praying for the family and for little Elizabeth. The song "Blessings" had been very special to me, as well.

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  2. Dawn Benjamin10/29/2014 11:25 AM

    Praying for Elizabeth and your family. Stay strong! Please don't hesitate to let me know if there is anything I can do to help.

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