Okay, my reflective daughter is wondering if God is testing her. I said if he is, you are acing the exam!
At the end of last blogRyleigh and I were having a very disruptive sleep last night with frequent visits from the nurses to check her vitals and see what her cognitive status was. Then the day consisted of numerous visits from various groups of doctors from Neurology and GI. Ryleigh has been isolated in her room and they have told her she cannot leave it until at least Friday – they are hoping to get results from some of the virus tests to see if a virus caused this palsy. This is a picture of her today. She is a bit more droopy in the eye area.
Ryleigh’s palsy has not improved but it has stayed in the face. Her right eye is drooping more but she has been working on trying to widen her smile. She has to wear a patch when she is sleeping because her eyelid does not close fully and they don’t want to her eyes to dry out and damage her cornea. She worked with her nurse to design this unique patch to help her eye at night.
Ryleigh is scheduled for an MRI tomorrow to look at her brain. The interesting part is that for this MRI she cannot have it with her braces. So, tomorrow morning she is heading down to dentistry to have her braces removed! I wonder if they would throw in a cleaning too — she has missed a few cleaning appointments. I contacted her orthodontist and they said go for it as she is close to having them finished anyway. They told us that they will put them back on and take care of things when she is healthy and back at home. No charge to have them redone! Whew!
The scary part today was that she was having difficulty chewing and ended up choking a couple of times. She was determined to cut her food in small bits and slow down and chew the best she could. To have Ry interested in eating and drinking for once is amazing! However she was assessed on drinking some water and choked a bit. It was determined that it was the safest route to have Ryleigh not drink or eat until they determine the extent of her palsy through an MRI of her brain and nerves around her face. That was all well and good but they forgot to tell us and as we were cutting up her cheese pizza into little bits the nurse interrupted us and gave us the news that Ryleigh could not eat or drink. This was very upsetting to Ry as the prednisone gets her to eat almost non stop and tells her brain that she is hungry. She had a mini melt down and then proceeded to go on with her night.
Ryleigh’s demeanor has changed slightly and I am not sure if this is because of the stress, her Bell’s Palsy, or medications. As they day went on she seemed dopey or intoxicated. At one point I asked the nurse if they gave her an ativan or something…she was a little out of character but it was quite endearing.
As her mother it is challenging to see her struggle with trying to be positive and not feel let down. She handles each bump with such dignity and courage but I can’t help think that she is discouraged and wonders if things will get better. Her spirit has been beat up a bit. We ended the night on a good note….she had a bath and I helped her relax, it was very soothing for both of us. Reminded me of the many times I helped her when she was young. It seemed to help her as her heart rate has been zooming up to numbers like 145 and 155 per minute and she was lying down. But after the bath it went down to 110ish. Much better!
Tomorrow brings another day with more examinations….but once again, Ryleigh will continue to be resilient and persevere. I am so proud of her.