Yesterday was probably the most up and down day so far. I was on the edge of my seat waiting to hear if Ellie would be able to go home. Ellie started the day slow and not feeling well. She did some vomiting after eating a little cereal. The Neuro Surgery Team did a catscan and decided to readjust her shunt. Last night about 5pm we got word that they where keeping Ellie another night. Although it was devastating to hear that Ellie was not going to Hamilton you know it was the best decision when she agreed. Ellie told the Doctor “She wanted to do what was best for her health” I am so grateful she made a very mature decision. She hadn’t felt well all day so I know it was for the best but my heart was breaking that she wasn’t going. We already purchased the tickets so Myself, my mom, Sister, and her family where still going to go while my stepdad was going to skip and sit with Ellie in the hospital. The money we loss on Ellie’s Ticket was the farthest from my mind I was just hoping that I would be able to even enjoy it knowing Ellie was not by my side and this was for her. My heart was heavy because there was a limo setup, a nice dinner, the Play, and going onstage after to meet the cast, this was all for Ellie and she was not feeling up to nor could come to enjoy this.
I was extremely grateful that my sister bought tickets for herself, my brother in law and nephews to go along. They made the night enjoyable for me. They had never road in a Limo so seeing them so happy made me happy for the evening. I wanted to thank Liz Tomala and her daughters Girl Scout troop for providing the limo, it was fantastic. It gave me such great pleasure in seeing the joy on my nephews faces. My nephews are like brothers to Ellie and this has been a huge struggle on them emotionally also. Jake had no desire at all to see Hamilton so we left him and my niece Kaylin at home with Dave. Dave took them to do something super fun instead. They got to go to Dave and Busters and Jake was very happy with that. So grateful that Dave and I have become so good at dividing and conquering. He handles the home front and Jake while I handle the hospital and Ellie. Although this is awesome Jake does not handle change very well as he has sensory integration and any change in his daily life sometimes throws him off. I was able to spend a couple minutes with him yesterday and he seemed sad but when I told him he was going to Dave and Busters he got excited.
My mind is wandering so I am going back to Hamilton. I was super concerned during dinner that I would not be able to enjoy it and I would be spending the night thinking of Ellie or worse sleeping through the play because I was so mentally and physically exhausted. My mom sent us a text during dinner that Ellie had a visit from Larry the therapy dog and was super excited to see him. This gave me a little more sense of piece that she was happy and she wouldn’t want to miss seeing Larry. Also during dinner our connection to get on stage informed me that he would still leave us on the list along with my sister’s family. The excitement from the boys really brought my spirits up. So after dinner we needed to do a swap at the hospital, Papa for Grandma as my mom was with her during dinner and then my step-dad was going to sit with her during the play. It was so fun pulling up to the hospital in a limo. I’m pretty sure people where wondering who we where pulling up.
We got to Hamilton and you can feel the excitement building in the theater. The lights went down and then the musical started. I could not take my eyes off the stage as it was so intergang and so good. Can I just say Hamilton was the most amazing musical I have ever seen? I cannot wait to bring Ellie back when she is feeling up for it. I know she will LOVE it when she gets to go. What was a three-hour musical felt like it was over in an hour it was so good? After the play finished we went on stage and got to meet Miguel Hamilton Himself. How incredibly humble and kind he was. We also got to spend time talking to the drummer for the show and met a base player. They where all so amazingly kind. We gave them all Elliestrong bracelets and took photos. I wanted to thank everyone that made this possible. I want to give a shout out but I know they do not want recognition so you know who you are that made this possible Thank You for your help.
At the end of the night we had to go back to the hospital again in the limo. This time I was being dropped off at the ER entrance around 11:30pm and we where picking up my step-dad. Once again I wanted to thank Liz Tomala and the girl scout troop for arranging our ride. It was so helpful to be picked up and dropped off at the door and being able to do the shuffling of our family to stay at the hospital. When I got the room Ellie was resting soundly she didn’t even look up as I entered and moved around. Hannah our night nurse was telling me how cute Ellie and her Papa where. She said they walked the hall holding hands and talking. I was so grateful that he stayed with her while I was out and about. I was also told that the doctors felt we would be released this morning.
Well in true Cuiching fashion we like to cause drama. And the Drama is always saved for the Mama. This morning Ellie would not really wake up. Once we got her up she was crying in pain which is not like her again. She started to vomit and has not stopped since. She can’t keep anything down. We tried to get her to a chair for a bit but she was in just too much pain and kept vomiting. They took her down to catscan and again she started to vomit in the machine. I am so worried about her she feels so much better laying down and we are praying the doctors can figure this out. For now, I’m pretty sure she will be staying the night. We just re hooked her up to the fluids to help her get hydrated. We are waiting for approval for some Zofran to help her with her nausea.
I was talking to the charge nurse and telling her Ellie is supposing to be the princess on Saturdays parade and she told me she thinks we will be able to figure this out and she will make the parade but as we have learned this week nothing is a guarantee so we wait and see how she is doing. I wanted to give a huge shout out to my sister who got us an amazing massage chair for at home for both Ellie and I. I got to sit in it for a bit when I went home yesterday and I didn't want to leave it. Even though we have not really been home Thank you, thank you, thank you for all the love and support you have given Ellie and our family.
For now we wait, pray and hope that Ellie Kicks Ass.
Hamilton Night minus the Ellie.
A mother with a battle ahead of her.