Day 49 - Wednesday February 1, 2012

What a day!  Bridgett got an intestinal virus yesterday, with cramping and diarrhea. She woke up to diarrhea and just feeling yucky.  I helped her shower by myself so that she would feel clean and ready for her eye appointment.   They schedule showers every other day and subject to when the aide has the time to do it, so most times you can't plan for an actual time you want. For quite some time I have taken her to the bathroom myself, hoping to preserve her dignity somewhat and I also help in the shower. I have been afraid to do it myself without asking, but today I guess I was a rebel and just did it. She is much more stable and uses a shower bench now and I just went ahead and showered her because I will be soon anyway. She didn't feel good this morning because of the virus and I made the decision to let her stay in bed and miss therapy, hoping that she'd feel good enough for her eye appointment at 11:00.  The doctors told me that booking the eye appointment took 7-10 days, and we do not have the luxury of waiting for that whole process again.  By the way, they don't like it when you cancel therapy for any reason. Occupational therapist, Rebecca, came and I said that Bridgett was not feeling well would be staying in bed. Just before she came in Bridgett had another one of those moments that she's been having lately and said something is really really wrong with me, I just can't figure out what.  We talked for a bit and I tried to explain (simply) and reassure, but she was so upset, it upset me.  I usually hold it together, but I started to cry (tears down my face).  I made myself stop and it was almost immediately that Rebecca came in.  She could see we were both upset and asked what was wrong.  I told her simply what Bridgett had said and then said I need to excuse myself for a minute and left the room.  I went out and let myself have about 2 minutes to compose myself and say a prayer for strength.  I returned to the room, realizing that Rebecca probably thought Bridgett was saying she couldn't figure out about the intestinal virus.  But, she was very definitely talking to me about her overall situation and her frustration with trying to do what she should and not being able to accomplish the things she wants to. So, a rough start to the day.  Rebecca worked with Bridgett in bed for only about 10 minutes.  Her breakfast showed up and she ate scrambled eggs and oatmeal.  Physical therapy showed and I cancelled.  I said maybe this afternoon she will feel better.  They tried to push for 2 sessions in the afternoon, but I pointed out that her schedule with six therapy sessions and the eye doctor would not allow for that.  Speech therapy came and worked quietly with her in bed for about 25 minutes.  When it was time to leave I looked for the person that was supposed to transport us (wheel us over to the adjoining building).  They hadn't shown up.  I had checked yesterday to make sure it was all set up, even though I shouldn't have to worry about that.  I called for the aide to check things out and she ordered another transport.  Finally with only seven minutes to go, I put Bridgett in her wheelchair and went to the nurses station.  About four minutes before the appointment they showed up and we booked it over there, arriving about seven minutes late.  So, you won't believe it but we were there for FIVE HOURS.   We had to wait like 50 minutes for the appointment to start, but then the rest of the time they were examining, moving her to other rooms for other tests etc.  Thankfully I had brought her a banana just in case and a powerade.  They also gave us a small bag of pretzels and some water.  Anyway, Bridgett was a trooper!  All of the prayers paid off!  She cooperated beautifully.  They were very accommodating to her, with her language difficulties right now and the testing.  All the way around things went well and they were able to diagnose her.  Of course, the diagnosis was hard to take.  But, at least we know the problems.  Her left optic nerve is damaged.  They will wait one year from the accident to allow it to heal as much as it will, and then do surgery to try to repair.  Also, she was diagnosed with parinaud's syndrome, affecting both eyes.  She is an interesting case to them, as a learning clinic, because she has all aspects of this syndrome.  The hard news was that this was caused by the placing of the shunt to relieve the pressure in the brain when she arrived at the emergency room initially.  This is the most serious and vexing of the eye problems and could have been prevented.  Of course, they saved her life, but it's sad that this happened in the process especially since it so impacts her rehab and also her appearance.  Will it resolve, even a little?  We don't know.  On the internet it says that healing will take place in 3-6 months, with little improvement after that time period.  It's already been almost two months.  She still has double visione, which they can't do anything about now.  They suggest that we patch the left eye, as it is the weakest, for about three hours a day.  The rest of the time the eyes need to be trying to work together.  I asked if this will further weaken the left eye and they say no. I guess it can't get much worse.  I asked about her inability to consistently identify color.  They said that the left eye definitely can't see color.  It is unclear at this point regarding the right eye. She needs a slight correction because of actual vision, but it won't help much and with all the other challenges she is having, they say it will just be annoying to wear glasses.  Anyway, whatever the limitations that Bridgett has at this point, miracles can still happen.  It's still early in the healing process for a brain injury and we will not rest until we find the perfect solution for rehab and recovery.