What a world win of a day/night. Yesterday Ellie hit an all time high of lethargic. She woke up again and threw up. It has been so exhausting watching my daughter disappear as her health has dwindled. She has lost so much weight from the lack of eating and the extreme vomiting. It was so concerning yesterday as I watched her leggings that use to cling to her legs look loose. Watching her walk she was so weak. We contacted Ellie’s surgical team and they told us to come down to the ER. My anxiety was through the roof being so concerned about Ellie. I just did not see an end in sight, was this our new normal? Ellie not having enough energy to do anything. She has only had enough energy to do maybe an hour of laying and watching TV at a time. She sleeps till 12noon only to get up and move to the couch and sleep on the couch as I force her to get up.
We arrived down in the ER by 2pm and the Neuro Surgery team told us they were pretty sure Ellie was going to have to have a shunt put in. This is something we have been trying to avoid if possible, they where hoping the drainage of the spinal fluid would regulate and she wouldn’t need a shunt. As we sat in the ER Ellie began to cry and said “I don’t want surgery I’m already in pain and don’t want more pain, will I ever not be in pain again” this poor girl this is not the way to live. This was the first time Ellie has cried about her situation she has been such a strong person throughout this process. I have to say I had several breakdowns myself yesterday because I was wondering the same thing.
They did a Catscan and informed us that Ellie’s surgeon is coming in from clinic at a different location just to do her surgery. I felt a sense of relief knowing her surgeon was coming and having complete trust in him. A shunt would be placed in her brain and a tube will run down to her stomach to regulate drainage from the brain. They told us to give her hugs and kisses as they rushed her into surgery around 6:00pm. Although I was stressed, I felt a sense of a relief knowing that this could help Ellie feel like herself again. It was the first time I have smiled in days knowing that this could be a solution. Even though I felt a sense of relief I also felt a sense of sadness knowing that Ellie will most likely live with a shunt the rest of her life. With a shunt brings new dangers and precautions to her life but at least she will be able to live again. I spoke with my sister-in-law as she does shunt surgeries daily in California and she put me at ease as she told me there are so many people that live with shunts including adult athletes.
We went and got a bite to eat and closed down the surgical waiting room as we watched it dwindle to just us. Even the concierge left and the cleaning crew came in. Then Dr. Dipatri came in a little after 9pm and informed us that Ellie did well and can move all her extremities. He informed us that there was pressure buildup from the spinal fluid in the brain and this was for the best that we did the surgery. He informed us that he was getting ready to go home and that he would be back to see Ellie tomorrow. I was so happy he came in and did the surgery instead of admitting us and waiting till today. This gives her a jump on the recovery. Once we went back to the surgical room to see Ellie, although I was relieved I felt a sense of anxiety because I am used to a recovery from a brain tumor resection and this was a different surgery with different incisions to care for. She has a new incision in the back of her head where they shaved her head a little to place the shunt and also an incision in her stomach. They informed us that Ellie would most likely wakeup with pain and stiffness in her neck and stomach. Ellie did wakeup to tell us to let her sleep that she was good. By the time we got to a room and got settled it was 11pm. The nurse informed us that they will be waking her hourly to do neurological tests. Ellie was in some pain but fell asleep quickly for the night. I wish I could say the same for me, I didn’t get much sleep throughout the night. I did get a bit here and there but for the most part I was half asleep. Ellie woke up at 4:30am and got up to use the bathroom with the nurses help but this gave me a great sense of relief as I saw a glimmer of my girl back. I then had a smile on my face as she actually ate a bite of cracker and asked if she could watch TV. This was a first time she has even had interest in TV in a long while. It is now 5:30pm and Ellie is sleeping and moves around every so often to try and find a comfortable position. Last night they said they might even release Ellie later today or tomorrow morning depending on how she does. I have told them Ellie has a very important Date with Hamilton Wednesday Night and her surgeon did not see any issues with Ellie going. Now I actually am thinking that she might enjoy it even more. Ellie has been listening to the music everytime she takes a bath at home and has been looking forward to this so I was a little nervous about if we would be able to go or not, so I was happy to hear them tell me they didn’t see why not. I have my fingers crossed that we get to make it home tonight so we can get one good night rest and back to relaxation.
Thank you for everyone’s love and support. Tonight is the fundraiser at Gelsosomo’s, there are two seating’s 5:30 and 7pm. Please consider getting tickets. It is $20 for all you can eat pizza and entertainment put on by the Allegro Dance and Music Academy of Lemont. All proceeds will benefit the EllieFund to help with medical costs. The kids have been working very hard to put this together to show there support for Ellie. If you live afar you can get a virtual ticket for $10.
You can call Allegro Dance and Music Academy for tickets. They might be selling at the door too, not sure. I have had my plate a little full so have not kept up like I should. Call Allegro at 630-257-6964 for tickets or details. It warms my heart to know how hard these kids have rehearsed and worked to put on a show to help Ellie and our family. Please Please show them your support.
A mother with a battle ahead of her.