My family is my life. My children and husband are the air I breathe. They are my sunrise and sunset. They are my joy and center of gravity. They are my heart and they are my soul.
Tonight my sister has taken my three unhospitalized children to her home. She is trying help alleviate some of the stress of having to manage a family life both at home and in the hospital. My sister is a wonderful woman who knows just when to step in, and always seems to know when I need her help the most without my ever having to ask. I owe a lot to her, and my words will never be able to express the gratitude I feel in my heart towards her.
Sarah had a rough day at the hospital. Probably one of the hardest she has had among all 4 of her hospital stays within the past 5 months. She endured a 3, not one or two, but three hour MRI - unsedated. I have never been in the room with her for her MRI's (including today she has had a total of 3). Bob is usually the one to go with her, but today he had to work so I had to take her. If you have never been in the room with a child while she is going through an MRI count yourself as one lucky person. I can honestly say it is like living in hell, but on earth. The sounds are horrendous and so loud. It is like a constant jack hammer sound for most of the process. She could not move, and had a contraption over her head the entire time that was like having a box with eye holes over your head within inches of your skin - and Sarah endured this, without complaint, for THREE hours. Let me remind you - she is 8 years old. I wanted to scream and cry while I sat there with her, and I wanted more than anything to be able to take her place and take this burden off of her shoulders. To make it my own. Not a peep from her. The staff was blown away by her patience and her grace. I wanted to scream at them all that if they EVER try and give her another MRI without sedating her first they better think again because it is not happening. The thing about having such a "good" patient is that doctors and nurses try to get as much out of them as possible. I think that they push too hard sometimes because they know they have a compliant patient. Sarah was beat when she was done with her MRI.
After it was over we had to wait 20 minutes for someone to wheel her back to her room. (I am not allowed to do this for liability reasons.) Instead of going back to her room to take a much needed break that we both so desperately sought we were immediately whisked away to her ophthalmologists office where her doctor could clearly see was beat. Rather than run her through a battery of tests, Dr. Locastro decided to just do the bare minimum of tests to get the information that he needed. I was so grateful to him for that decision. Sarah was even more grateful.
She came back from that appointment, and having been gone from her room for 4 1/2 hours going through test after test after test took a nap. Her spirit was zapped today, and I could see this disease was taking its toll on her mental health. She cried tonight when she received her Benedryl via IV. Bendryl is known to burn when it is entering your body because of its potency. She has to take it to keep the side effects of the IVIG at a minimum. This was the final straw for her. As she fell asleep while getting her IVIG treatment I could see the sadness in her eyes and the weariness in her heart. It was so hard to witness. She has been such a fighter throughout this whole thing. Such a trooper. The day got the best of her. It wore her down, and depleted all of her strength.
Her eyesight is not coming back like it should. Her left and right eye are at 20/100. We are all hoping it is just taking the medication a little bit longer to kick in. Tonight was her last steroid treatment. She has two days left of her IVIG treatment. On a good note - her the MRI of her spine came back with no lesions on it. Now we are just waiting to see if she has developed new lesions on her brain. If there are no new lesions then this episode will be a continuation of her initial exacerbation. This would a good thing. If there are new lesions found on her brain (we should have the results tomorrow morning) then this will mean that this is a second episode. A new episode so close to the first one would mean that she may have a more rare type of MS that is not so kind, and does very ugly things to ones body and mind very quickly. I will not allow myself to go there because the horror of that type of MS cannot be allowed to happen to my sweet Sarah. So, I will maintain hope - it is all I have anymore - that no new lesions will be found. Until I hear otherwise this is the only option for her, for all of us.
Tomorrow will hopefully be a better day. It has to be. She is looking forward to seeing her siblings and her two cousins so much. She loves to be with them. Her friend is also scheduled to stop by tomorrow evening.
I am finding it hard to breathe with my family scattered here and there. Bob is staying with Sarah tonight in the hospital. I am home with Lily (the dog) and the emptiness of my home is depleting me of my spirit. I long for Sunday night when everyone will be tucked into their beds, and all will be accounted for in my home. My sun and moon are hidden behind clouds right now. My center of gravity feels off kilter. My heart and soul ache more than you can imagine.
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