Ellie’s second half of day was filled with allot of rest, nausea, and a fun visitor named Larry. We finally got Ellie up to use the bathroom. Although her left side is much weaker and she needed two people to hold her up she did fantastic. The Nurses called this Day 1 even though Ellie’s surgery was yesterday they count that as day 0. I think Ellie got maybe a quarter of a cracker eaten today, she has to eat on her left side of her mouth only as she still cannot feel her right side. Doctors are hopeful this is temporary but they said there is a chance it isn’t. Although Ellie was able to get that piece of cracker down, unfortunately it came right back up. Ellie never had this Nausea before with any of her other surgeries so it’s a new experience. We were able to get her in the chair for a few minutes today. Every little step is progress.
Ellie made some comments that really broke my heart, she said she hated her life and she was miserable. Poor thing just can’t keep anything down. Then Ellie had a special visit from her Aunt Kelli & Uncle Keith who brought a huge bags of inspirational cards from the Lemont Community. They gave my mom and a I a break so we could go get lunch and just get away for 45 minutes. They where assigned the task to keep Ellie awake as she has done nothing but sleep. They read cards for the full 45 minutes and didn’t even get through 25% of them. These cards where so uplifting and Ellie just loved all the cards, gifts, and we cannot tell you how much I appreciate the generosity of Gift Cards. I wish I could thank each individual person for the joy they have brought us but It would take me days and days. The nurses where all very impressed by our small town of love and support. Lemont is one of a kind to say the least. One of my favorite cards that just made me smile from ear to ear is a kid drew a bunny with a pancake on its head. I just can’t stop smiling thinking of a pancake on a head of a bunny and how did he come up with that? But it was brilliant. I was able to hang a very small amount of the cards and am looking for more places to hang more. (That’s a task for tomorrow). Aunt Kelli, Uncle Keith, and Grandma (my Mom) where just about to leave for the day when there was a knock on the door.
I saw Ellie get a spark in her eye I have not seen in a long time. I looked around the door to see and it was a Volunteer with a therapy dog named Larry. This couldn’t have come at a better time. I wish I got the initial expression of excitement Ellie had on her face. It made me want to go out and get her another dog. (Dave don’t worry I thought this for only a moment, we have two amazing puppies at home and that is plenty for us). Larry laid with Ellie up on the bed and even Larry didn’t want to go when it was time to leave. Larry really liked Ellie, and the feeling was mutual. Larry left and within an hour Ellie’s arm swelled up at the IV Site. Something had knocked the IV luckily we caught it early and they where able to pull it out and work on getting the swelling to go down. But with this it meant another poke for Ellie. We asked Ellie (Who can’t stand pokes) if it seeing Larry and cuddling worth getting poked again and she said YES without hesitation. I would have to agree with her it was a very special moment in our hospital stay and we really don’t know what knocked Ellie's IV out I think it might have been when she was up and went to the bathroom. But it didn’t matter as she was happy.
One of Ellie’s friends from High School Abby, was down here for a doctor’s appointment and stopped by to bring Ellie a little something. I was heading out to see them in the lobby when the IV team came in and Ellie didn’t want me to leave them so sadly I wasn’t able to see them but they left a very nice bag of goodies for Ellie. Ellie facetimed her friend later and it was difficult as when she talks she drools out of her right side so I kept on wiping her mouth and then she had to hang-up abruptly because she got really Nauseas. Poor girl can’t even get through a phone call.
I can’t get over the generosity and love that is being shared with us daily. Mrs. Duffy her 2nd Grade teacher gave us a bag of stuff including this amazing angel that is sitting on the shelf watching over her. Another one of Ellie’s old teachers from junior High Mrs. Neves, gave her a card with two brand new sharpies because in Junior High Ellie would carry a full set of sharpies around with her and they both shared the love for sharpies. The thoughtfulness is so amazing by so many. Like I said I would love to thank each individual person but I don’t know where to begin.
We saw the Neuro team tonight and they showed me the scan and it looks amazing Dr. Dipatri did an amazing job. The one nurse here just raved about Dr. Dipatri and how impressed she is with him and how she looks up to him. She told us that he knows all the nurses by first name and truly cares. He invited her to observe a surgery once and what stuck with her the most was not just the time and caring he spent during surgery but after it was all done he took his time brushing the girl’s hair and putting it in a pony tail. She said here are all these nurses and assistants around him that could do this and he did it himself. This story was such a great story and it just shows how these doctors are some of the most amazing doctors.
After the visit from her team Ellie had her absolute favorite visit of the day, her Daddy. Ellie and Dave have such a connection and she was so happy to see him tonight. They cuddled and took a nap just like 7 years ago after Ellie’s first surgery. Every time I see the connection that Dave has with my kids I fall in love with him all over again. All the nurse’s hearts melted when they saw Ellie’s connection with Dave also. Even though Dave could only stay for a little over an hour (He had to get home to get Jake ready and in bed for school tomorrow) and it took him longer in the drive here and home. It was so worth every minute of his visit.
We had a great day with many great visitors and now things are calm and its just me and my girl. She has been mostly sleeping and I was able to take a small nap. They are moving to every 2 hour assessments, and then they come in for pain meds, steroids, & Zofran. So allot less frequent visits then last night so I’m hoping for a little more sleep tonight. My mom will be here in the morning to give me a break and then I can maybe get a nap in. Thanks again for the love and support, I know I sound like a broken record but I don’t know what else I can offer but my gratitude and I feel like I should be offering so much more as you have given us so much love.
A mother with a battle ahead of her.