I apologize for the late update. My sister, Marian, arrived from Georgia tonight after several delays. I am so glad she is here!
Vivian continues to trend in the right direction, though she had a few rough spells today.
Out of the blue this afternoon Vivian started claiming that there was a bee on her nightgown. She kept saying, "Go away, Mister Bee! Go home and see your family!" in between screaming and trying to blow or shoo him away. Her hallucinating was pretty horrible and frightening to witness, but fortunately Vivian eventually settled down.
Vivian ate quite a few bites of Cream of Wheat and drank some more Sprite today. Tomorrow I am going to attempt to give Vivian a couple of her regular seizure medications orally again. Since Vivian's extended release medications cannot be crushed and given through her g-button, she is receiving the regular formulation of those four times a day, but she does not seem to be absorbing them as well.
Robert took Vivian for a long walk in her stroller this morning. They left the PICU and explored the beautiful new lobby of the Children's Hospital. Robert said Vivian seemed to enjoy her outing a lot. In addition to her little excursion, Vivian spent several extended periods of time sitting in her stroller. She appears to be more relaxed and comfortable there than in her bed.
Vivian's longtime neurologist, Dr. Riela, stopped by to see her and visit with Robert and me this evening. Dr. Riela was certain that most of the residual problems Vivian is experiencing relate to withdrawal from all of the medications she has taken the past 26 days (Vivian's hallucinations, insomnia, lack of eye contact, oversensitivity to light, touch and sound, and general grumpiness). He believes we will see a lot of improvement in Vivian after this withdrawal period and even more progress after we bring her home.
Because of the withdrawal symptoms, however, the PICU doctors want to keep Vivian in the hospital until Monday. I was a bit distressed to hear this, but on reflection I realize it will give us time to get all of our ducks in a row regarding home health care and therapy and to get Vivian as well as possible before recommencing to care for her ourselves.
Praise God for the incredible improvement Vivian has made over the past month. When I read back over my updates, every specific thing I asked you to pray for has been answered positively. Wow! Please pray that Vivian is able to resume taking her medications orally. Pray that Vivian's hallucinations end and that she is able to rest comfortably. Pray that her withdrawal symptoms wind down and that she begins to feel well again.
Robert and I are greatly bolstered and encouraged by the tremendous outpouring of support we have received. Thank you so very much.
"How lovely is your dwelling place, O Lord Almighty! My soul yearns, even faints, for the courts of the Lord; my heart and my flesh cry out for the living God. Even the sparrow has found a home, and the swallow a nest for herself, where she may have her young - a place near your altar, O Lord Almighty, my king and my God. Blessed are those who dwell in your house; they are ever praising you." Psalm 84:1-4
Married for 27 years to Robert, three kids: Will (23), Vivian (20) and Dots (17) ~~~~
Majored in mathematics at SMU, taught elementary school for six years before Will was born, currently tutoring math ~~~~
Things I enjoy: playing duplicate bridge, working NY Times crossword puzzles, reading good books, entertaining, visiting with friends, planning trips, traveling, playing board games, spending time with family, cooking, keeping up with old friends ~~~ happy to correspond with other parents about raising a child with special needs
I unintentionally contaminated all of the pictures on my blog when I changed my privacy settings on Flickr. I am working backwards to correct them all, but it is quite a tedious procedure! If you encounter a post with error messages from Flickr where the pictures should be, then I haven't gotten to that post yet. Please let me know and I will update it immediately. Thanks for your patience!