Today started out rough...it was destined to by 6 pm the night before. I was given strict orders to not feed Evalette solids after 6 pm and no liquids after 4 am. The plan was to get her into surgery tomorrow morning to place a central line in her chest, where they will be doing blood draws and giving her her chemo through for the next two years. So I followed the doctor's orders. We were supposed to know by 7:30 am when we would be going down to surgery. It was a long night. These high doses of steroids seriously make her eat more then her brothers and that is saying something! She seemed to know that she was going to get cut off so at 10 pm, midnight, 2:30 am she needed mommy's milk. It was like feeding a newborn again. I was exhausted. After hardly sleeping at all last night, this morning when our wonderful nurse, Dave, came in after shift change, he did Evalette vitals. She woke up and I wanted to cry. He told me to go back to sleep and then sang her back sleep. We both conked out until 9 am. By 10 am, Evalette was dying...she needed some food. How mean that they give her steroids which cause extreme hunger and then don't let her eat for hours and hours. I understand that it was for her good but I was more upset that the doctors weren't getting along, thus pushing back her surgery time or delaying it completely for that matter. The surgeons, her oncology doctors, and her hematologist doctors wanted the line placed. The anesthesiologists didn't agree. Because she had tested positive for RSV, they didn't want to risk comprising her breathing when they put her under. They wanted to wait a couple of weeks to make sure. Their concern was valid, but the rest of us felt that since she has had no signs and symptoms of the virus and she has probably been carrying it since Jan that things probably wouldn't be changing anytime soon. For her well-being it needed to happen today. So they went back and forth, trying to come to an understanding, while we suffered, stuck in a little hospital room.
My sweet baby was getting more ornery by the minute. And nobody had an answer. I didn't know what to do. So I prayed. I prayed for patience. I prayed for guidance in knowing how to help her calm down. And I prayed for angels to help me. And I prayed for the doctors to decide one way or the other.
Well, I got my angels. My good friends, Kari, Jennie, and Debbie stopped by with gifts and Doterra oils. Evalette was happy for the change and so was I. Each of them took special time with her and took a huge load off my shoulders. I was tired and it was a nice break. They brought me a book to read and the cutest socks, which the night before I was thinking that I needed to have James bring me socks because my feet had been cold. Truly they were angels.
Jessica, one of my very best friends from high school, stopped in. Her visit lifted my spirits and it was fun to catch up. Another sweet angel. After they left, the time dragged on. Still no answer and it was 12:30 pm now. Evalette was beside herself. So I patted and rocked, and patted and rocked. She was so tired, but couldn't sleep because she was so hungry. The sweet tech called up the music therapist, as she was hoping that would help. All the nurses and techs felt so bad for Miss Evalette. The music therapy was amazing. Evalette loved the music, enjoyed the guitar and drums, and they even left her a music instrument just for her. It also calmed me down. Another answer to my prayer.
1:00 pm and we were all done. Dave tracked down the doctors and told them if they didn't make a decision he was going to let me feed her. They told him, surgery would begin by 3 pm. Finally, but we still had 2 hours. So I sang to my sweetheart. We had fun for a while, but then she had had enough. So at 2 pm, Dave took her and sent me away to get lunch. She fell asleep in his lap as he sang to her. Another angel. She seriously adores Dave. James and I appreciate him and all he does for us. We finally got into surgery at 4. All went well and she now has a central line.
Although Heavenly Father didn't take away the trial of today, he sent angels to help make it easier. I know that HE not only hears, but answers our prayers. Truly he is mindful of us and of our needs, no matter how simple or unimportant as they may seem. She is sleeping now, peaceful and full. I don't think she has ever loved eating as much as she did tonight!!! Thank for all the prayers today. They were just what we needed. Tomorrow is her birthday and it will be great!
"There is no obstacle too great, no challenge too difficult, if we have faith." ~ Gordon B. Hinckley
Family
OUR JOURNEY
This is our family's journey- the story of our daughter's fight with cancer. Along the way, we will have some tears, lots of love, and even more prayers going up to heaven. We know that our Heavenly Father is aware of us. We know that he will help us fight, fill our hearts with peace, and send angels to give us aid. We send praise to HIM. Join us in this battle. This battle of courage, determination, and most of all faith in God that all is well and will be well.
This is where I will record my feelings- raw, real, and unfiltered. Welcome all.
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I am so thankful that He heard your prayers. I know He is aware of you and your sweet little one. Thinking and praying for you. xo
ReplyDeleteDanielle you are such an inspiration! You are so uplifting. Here in your trail you are lifting others around you. Thank you . My prayers are added to so many others. (I was lucky enough to work with your sweet Mom at Sunrise. I so miss her.)
ReplyDeleteDanielle, I was so glad that we could come to visit today. We/I will do that again to help you through this trialing time. We love you and big (((hugs))) Glad they finally got that central line in! That is crazy that it took that long... and for her to go without for so long. (((hugs))) to Evalette too. Give her kisses!
ReplyDeleteThat sounds like a nightmare. I am so sorry. How do you make a one year old understand that they can't eat? I am glad you had friends to help you through it all. Happy Birthday to your sweet little Evalette!
ReplyDeleteDanielle, You are such a beautiful woman, inside and out. I am so impressed by your courage and faith during this difficult time and so touched by your ability to describe your experiences through writing. I'm keeping your family in my prayers!
ReplyDeleteHow sweet to have such a wonderful, wonderful nurse. I work in the NICU and hope to someday make an impact on a family like Dave has made on yours. Prayers for the little miss.
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