So here is my "quick" update because I know most of my post are a tad bit long winded (sorry)
Saturday Henley spiked a random fever of 101.4 around 4:00pm. Since this isn't our first rodeo I went ahead and started running through my "Emergency Plan". I know 101.4 fever is not a lot for most kids but Henley is the kid who never runs a fever....for anything. So a fever for her just about merits an emergency plan.
Adam and I made a plan to take Henley to an ER that was not associated with Cooks for the reason of not having her chart red flagged with an ER visit a week before her scheduled surgery. We just needed to have piece of mind that it wasn't something major that needed attention and if an antibiotic was needed, we wouldn't have to wait it out for another day to see her pediatrician. She was not diagnosed with anything in particular but given her situation, the doctor went ahead and gave her amoxicillin to just cover her until the surgery.
Sunday Henley seemed about the same. She was not really eating or drinking and only had a couple of wet diapers. We had our babysitter come to be with the kids so that we could go to our small group (since we can't have them in group childcare settings right now) About 30 minutes into our small group I got a phone call saying that Henley had just thrown up all over the living room. Awesome. By the time we got home she had already been bathed and was asleep in her bed.
Monday Henley was not herself. Still not really eating, lethargic, not happy. She was complaining a lot about "ouches". This has been a recent but constant occurrence over the last 3 weeks. She seems to constantly be saying "Mommy, ouchie!" "Mommy, it hurts" while pointing to different parts of her body. (back of hands, knees, lower back, head, feet. etc) I even noticed her holding her head a lot. Around 2:00 we had her dietitian come as well as her caseworker for ECI. They needed to weigh and measure her and it was all I could do to get her to cooperate. She is usually so good about this but she was in rare form. She just cried and cried until I took her up to her room which was dark and cold. When we walked in the room she stopped crying and was so happy to be put in her bed. Monday night she threw up all over the playroom floor and continued to be miserable.
Tuesday was worse than Monday. She threw up two or three times that day. I felt like all I did was clean up vomit off the carpet and listen to her tell me about her ouchies.
Wednesday we had Henley's favorite little friend Emerson come over to play. I thought that would maybe make her feel better. However, the entire time she was there Henley laid on the floor in the playroom and just watched her play. I tried to feed her lunch and she wanted nothing to do with it. She wanted to lay under the kitchen table instead. After I ate, she wanted to just hold me and lay on my chest. She looked miserable all day. We had an entire playdate happening with lots of giggling, squealing etc and Henley just wanted to be alone in her room. I put her down for a nap around 12 and she stayed there for an hour. When she got up, she went back to the playroom to be with everyone and just laid on the floor again. After our friends left Henley had the worst accident of all. I won't even go into it, but just trust me when I say it sent me over the edge in disgust.
Thursday morning Henley woke up, came downstairs and said "Mommy, medicine?" My heart just sank. I cannot even express how much it hurts my heart to know my sweet baby is in physical pain and there is not a thing I can do to fix the real problem. Before, she was not showing signs of being in tons of pain. It seems we are to that point now and its really hard to watch this unfold in my baby.
It was at this moment that a lightbulb went off for me. So many times I have heard or read about people in the bible who were so desperate to be free from pain and from their ailments that they were willing to do anything to just be in the presence of Jesus in hopes of him noticing them in the crowd and having mercy on them. I understand that now. I think so many times before I have prayed for others healing flippantly and just let the words "Father, please heal ____" roll off my tongue. Now I think I really get it. Now I am praying differently. "Father, PLEASE have mercy on this child. Please heal her, please fix what is wrong and make her strong and full of life." I have no idea if Henley will ever be able to have a fully "normal" life without pain, but rest assured it will be my daily prayer for her.
For Adam and I, we have both have felt continued confirmation this week that the surgery is necessary. I am thankful to have peace in my heart about the surgery. We just pray that God ultimately heals her is whatever way He chooses, so that she can live a life free from all the pain associated with the Chiari. Migraines included!