Vivian (with Baby Jesus, left) during today's extended EEG
I know that everyone is ready for a good update (and believe me, I am more than ready to write one!), and I am happy to report that today was a step in the right direction for Vivian.
Vivian had an extended EEG today which precluded the upper GI from being performed. When I arrived at the hospital, all of Vivian's electrodes were in place on her head and she was sleeping soundly. Robert and his mom had been there when the technician prepared Vivian for the test (my mom and I went to a parent observation at Dorothy's dance camp), and they reported that Vivian slept through the whole process and thus was cooperative!
Evidently Vivian did not sleep much at all for her nurse last night; ergo, she was pretty worn out today. I worried that this meant the neurologist would not get an accurate picture of Vivian's alert brain on the EEG, but eventually Vivian did wake up a couple of hours into the test and was quite active. We didn't observe much of the twitching that had previously concerned us; perhaps it has responded to the boosts in her seizure medications. Vivian, however, was increasingly interactive, if still far from her previous mental state. Vivian told us at one point that she was thirsty, and when Robert asked what she would like, Vivian replied, "Sprite, please." The nurse and physical therapist were so impressed with her good manners! When Vivian indicated a desire to get out of bed, we lifted her into her stroller. This time Vivian sat pretty well there for about ten minutes (with four of us surrounding and supporting her lest she arch her back or otherwise attempt to get out). At one point Vivian said pretty plainly, "I need to go to the bathroom." We were not able to accommodate her because she required too many of us to support her, but we were thrilled that Vivian was able to express this. Enunciating these phrases takes much effort and time on Vivian's part; she does not in any way speak with the ease she previously communicated, but we were very encouraged to hear her talking and saying more.
Vivian has made a mess of her legs and knees in her flailing around and attempting to break free from her bed. The charge nurse today persisted in locating a bed that could restrain Vivian without the hard rails that were causing gashes and sores on her legs. We are thankful to this nurse, Terry, for her diligence on Vivian's behalf, as Robert's Eagle Scout skills were maxed out in attempts to pad the bed and the rails with blankets tied with fancy knots.
Vivian's new bed
Tomorrow morning Vivian will have her upper GI test, and in the afternoon a surgeon will perform the procedure to insert the g-button for Vivian to receive her nutrition and medication. We are looking forward to removing the N-G tube from Vivian's nose as it is a persistent annoyance to her.
This afternoon Robert met with the hospital social worker to talk about plans for bringing Vivian home. There is much to coordinate in terms of determining insurance coverage and Vivian's needs, but this was a good initial step.
I think it will still be early next week before Vivian is discharged from the hospital, but we are making progress in that direction. Robert and I were encouraged by what we saw with Vivian this afternoon. We have a long way to go but are for the first time feeling somewhat optimistic that we can get there.
Please pray that Vivian's g-button procedure goes smoothly tomorrow and that she once again tolerates the necessary anesthesia. Pray that the EEG yields some useful information. Pray that Vivian's speech, eating and swallowing skills continue to progress. Pray also that Vivian regains the necessary motor skills to walk and care for herself again. Praise God for the encouraging signs we are observing and for His continuing provisions for Vivian and for our family.
Thank you for your prayers and kind words.
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7
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!