Predictably, as Vivian reverts more to her former self, Robert and I are encouraged, but Vivian creates additional challenges for the PICU staff.
Vivian's hands are restrained, but last night she succeeded in using her teeth to pull her PICC line out of her upper arm. This was not good because the PICC line involved a bedside, sonogram-guided procedure under sedation to insert and Vivian needed the line to receive IV fluids and antibiotics. I have to credit Vivian for her resourcefulness, though! The night nurse put an IV in Vivian's hand as a temporary replacement, and the PICU doctor today, Dr. Wick, determined that the best longtime solution would be a port, which a surgeon will place under Vivian's skin on Monday.
Vivian was increasingly verbal today. The nurse reported that Vivian frequently requested to go home last night. Today Vivian told us she was hungry, and she exclaimed, "Help me!" several times as she struggled against her restraints.
The nurses and Robert lifted Vivian into her stroller this afternoon, and we walked her around the PICU "block." As we passed a book cart, I spied a copy of one of Vivian's favorites, Five Little Monkeys Jumping on the Bed. I grabbed it for her, and the charge nurse, Ronelle, began to recite, "Five little monkeys jumping on the bed. One fell off and bumped his head." Vivian didn't seem to be paying any attention so Ronelle paused. All of a sudden we heard Vivian say, "Mama called the doctor and the doctor said, 'No more monkeys jumping on the bed.'" We were ecstatically astounded! After we returned Vivian to her bed, she was exhausted from her brief outing, but I was able to capture a little bit of Vivian reciting the verse again on video.
Robert reported that Vivian was a bit restless this afternoon and kept requesting that he "buckle her seatbelt." Robert told me he leaned over her and pretended to buckle her in and that she then told him "thank you" and settled in for a few minutes before appealing for him to do it again.
Vivian is not happy about the tube in her stomach from yesterday's surgery (which I learned will not be replaced with a button for six weeks - ugh!). Right now she is restrained from being able to grab it, but we are going to have to figure out a new system if it's going to last that long; my mother suggested we tie a corset over it!
Please pray that Vivian's IV in her hand would remain in place and functional until we can get a port in place. Pray that Vivian would be less aware and more tolerant of the feeding tube in her abdomen. Pray that the incision from yesterday's procedure would heal and not cause Vivian pain and discomfort. Praise God for the truly amazing progress we have observed in the past couple of days and for the added strength and encouragement such gains have given Robert and me.
We appreciate each of you so much!
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
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!