As those of you know who follow my blog with any sort of regularity, Sarah has not been doing well since January 1st. Her vision comes and goes on a whim, but mostly it goes, and life has been hard for her to say the least. We have an appointment with her ophthalmologist this coming Thursday, and have a pretty good idea that he is going to want to hospitalize Sarah again. Of course, we are not for sure, but given where her eyes are now with previous visits when he has admitted her we feel pretty confident we will be spending some time at Akron Children's again this weekend.
Sarah is not a happy camper because of this. She is scared and nervous, and has asked us to see if her eye doctor will let her just stay home and weather this bought of vision issues. He just may honor her request as Optic Neuritis is supposed to go away on its own. It just takes a bit longer to restore one's vision when forgoing steroids. Sarah has done 4 rounds of steroids in the past 7 months and two rounds of IVIG treatment. These treatments are not working. They just aren't. The last line of defense that we were told many months ago when she was staying at the Cleveland Clinic was a treatment in layman's terms known as plasma exchange. Basically, this involves removing a portion of the blood in her body, cleaning it, and then putting it back into her body. I do not know if this is done on an outpatient or inpatient basis and I also do not know how many days she would need to have her blood cycled through this cleaning process.
I called her ophthalmologist to give him a heads up on her condition, so that when he sees her on Thursday he won't be completely shocked. The last time he saw her he was hoping that after this upcoming visit he wouldn't have to see her again for another 6 months. We have been visiting him regularly since her diagnosis, and we are all hoping that she was getting better for real. I let him know our thoughts on why we don't want to admit her and my thoughts on what treatment I would like to try if we do end up having to admit her. I am hoping that he will have had a chance to form his own thoughts or get some things set up so that we aren't waiting too long for any decisions to be made involving her care. We never really have had to wait awhile, but I know how nervous Sarah is so I just want to make this visit as smooth as possible for her.
It doesn't help matters that Sarah is very stressed about Thursday's visit. Honestly, I think she is making her condition worse because of the stress she is putting herself under. I know I am not helping the situation either by asking her several times throughout the day how her eyes are doing or how she is feeling. I am trying so hard not to bother her, but I am scared too. I have no control over this issue nor do I have any idea what she is seeing or not seeing through those beautiful blue eyes of hers, so I feel compelled to try and understand this experience as much as I can. The only way I can do that is to ask her a million questions. I really need to stop doing this to her. After all, Bob is constantly telling me that what will be will be - there is no use worrying about anything or stressing out about anything concerning her care because we have no control over it right now. Of course, he is right.
So, I am doing what I have learned to do, and am preparing for the worst while hoping for the best. I have made a grocery list, and will be going shopping tomorrow evening to make sure that I have simple, but nourishing foods for those who will be in my home to prepare meals for my kids. I am trying to arrange care for the kids that are not going to be hospitalized. I will be contacting friends and family to see if they can shuttle my kids to their activities this weekend, and all the while I will be hoping that I can contact all of these people back and let them know that their services are not needed after all because Sarah does not need to be hospitalized.
I have learned to go into hospital mode. In hospital mode I have very little time for emotion. I am just in a place of getting things done or arranging our lives to get from point A to point B. I am wondering what nurses will be on call this weekend - remembering their names and demeanor. This is just what those of us who deal with chronic illness get used to doing.
Sometimes it feels like we live a split life. Our normal home life and our hospital life.
For those of you who pray, I ask that you send up some words of love and hope for Sarah. Please ask that she does not need to be hospitalized. Please ask that her vision is restored. To normal. For good. Please ask that if she is hospitalized that she does not have to undergo steroids or IVIG because her little body cannot handle another round of either. Please pray that God gives Bob and I the strength to get through yet another round of uncertainty.
For those of you who don't pray, I don't mean to sound like a gosh-darn hippie, but please send us some warms thoughts of love and health. Please send our family some good juju. Sarah needs it. I need it. We need it.
I will do my best to keep you updated. Her appointment is at 10:45 am on Thursday. I hope to come back to you with some good news. I hope....That phrase has sustained me so much these last several months....
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