So I woke up surrounded by a group of Doctors at about 7am. The Neuro Surgeon on rounds said that hopefully we could get out of her within the next couple of days. I felt really defeated hoping that we could go home today. And then to hear next couple of days really put me down in the dumps. I was not looking forward to Ellie waking up and me having to deliver the bad news. Ellie woke up we got her in the shower and fresh for the day. I told her it might be a couple more days and she was extremely disappointed. Then we were off to the Audiologist downstairs to do a more in depth testing on Ellie’s Ear. The Audiologist informed us that Ellie’s hearing has gotten so bad that she would need to transmit hearing from one ear to the other. Which meant that she would need two hearing aids. I really felt defeated at this point, I held back the tears and tried to stay strong for Ellie as she hates her hearing aide now and doesn’t wear it because her hearing loss was so mild but with this progression she will have no choice but to wear it. We got back upstairs and a special illustrator artist was waiting to draw for Ellie along with my Mom and Sister our guests of the day. Ellie really enjoyed the illustrator he made a drawing of our dog bonnie. He also talked to her about how to draw. Dr. Dipatri, Ellie’s actual Neuro Surgeon, came in to talk to us and informed us that we are aiming for Ellie to go home tomorrow. I felt so relieved and excited. He also told us to not let the Audiology report get to us yet its premature. He said she is still healing and we really don’t know what is going to happen. They put her on a different kind of steroid and then we are going to re evaluate in a week. We then had OT Therapist come in and work with Ellie, and then Abby the Speech therapist, followed by Willow the Art Therapist. It was a busy day to say the least. My Mom and sister had to leave around 1:45pm. But not before Ellie could sing for them and some nurses. For being one week out of surgery and still not having feeling in one half of her face Ellie Ellie sounded great. Ellie was then really pooped from the day of therapies and tests but the PT therapist came to evaluate Ellie. Ellie was a rock star and at this time we can skip Physical Therapy until we take care of everything else. It was about time we had a win. It was finally time to relax and just take a nap. But before we could rest the evening Neuro Surgery Team came around to do there rounds. Dr. Bowman took one look into her eye and said that we need to get Optometry up here to look at Ellie’s eye. Ellie’s eye is extremely read and luckily it doesn’t hurt because her whole right side of her face is numb.
Optometry then came in to check Ellie’s Eye. Ellie has something called Exposure Keratopathy. Basically Decrease Lubrication due to inadequate eye blinking. Because Ellie cannot close her eye its causing some issues. The Optometry doctor told me that usually patients with these issues have to be transferred to ICU so that they can monitor and place drops in the eyes every hour. I was really upset because seriously we have to pack up everything and leave our pent house suite and head to ICU just for eye drops and lubrication every hour. So I told her to talk to Ellie’s Nurse, and Ellie’s nurse said we could stay and they would take care of it with Ellie. These nurses at this hospital on 19th floor are absolutely amazing. I just adore each nurse we have had since we have been here. I am actually going to miss all of them. Even when they are not assigned to Ellie they come in to visit and see her. We are so fortunate to live in a big city with a great hospital with awesome staff.
Back to Ellie's eye issues, for now they are putting eye drops in every hour, then lubricating gel every hour, Lubrication antibiotic 4 times a day because she is susceptible to an infection. And then taping eye over night and only waking her up once in the middle of the night to apply. The best part is I get to go home and continue this as long as her eye wont shut. Do you hear the sarcasm in my voice? If her eye never shuts, then we will have to proceed with eye surgery. I’m exhausted and praying every day that Ellie heals because this just isn’t fair that this is just the healing process and then we have a serious Chemo battle ahead of us. Ellie actually sang for a bunch of the nurses today and she sounded good. I know that she doesn’t sound 100% yet and has some work to do but she still sounded great for someone that just had brain surgery 7 days ago. I am so proud of her.
So for now we need prayers that Ellie heals and can shut her eye, and regain complete function of her face sooner then later. Also please pray to give me the strength to be her caregiver as we have a long road ahead of us. One more prayer that my MS holds out. The blog hit 14,000 hits this past week. Thanks for following Ellie’s journey.
By the way I had video of Ellie singing but I promised her I wouldn't post it right now. She is very critical of herself and doesn't like the sound on the recording from my phone.
A mother with a battle ahead of her.