It took a village to get the electrodes on Vivian's head during her EEG today
I really should have written at least five updates today as we dealt with so many different scenarios.
When my mom and I arrived at the hospital this morning, Robert was already with Vivian, and our dear friend Lant from Birmingham was visiting with him, having come through Dallas for business. Vivian was having an agitated episode, so I climbed in bed with her but was unable to quiet or console her. It is very difficult to see Vivian this way as she seems nothing like her real self. Vivian eventually settled down and went to sleep, and I was sorry that Lant was not able to observe her then.
Later this morning Dr. Matson met with Robert and my mom and me to discuss the state of affairs with Vivian. I was so rattled from the morning episode with Vivian that I almost skipped out on the meeting out of complete fear and dread. Dr. Matson, however, was so calm and compassionate that I left our conference feeling much better. Essentially Dr. Matson told us that he thought Vivian would be best served receiving intensive therapy at home when she is discharged and that she would also be provided full-time home health care. We discussed what steps Vivian needed to accomplish before she could leave the hospital and attempted to formulate a plan to address these. Dr. Matson also emphasized that it would be several months before we would know what Vivian's new "baseline" was going to be, that time and rehabilitation could bring all manner of improvement.
This afternoon Vivian had an EEG to check for epileptic or other abnormal waves in her brain. She was initially very uncooperative with the technician about having her head measured and marked and scores of electrodes glued all over her scalp. Eventually, though, Vivian fell asleep and the technician was able to administer the EEG. Dr. Matson spoke with Dr. Riela's associate tonight who had reviewed the EEG. He reported that while no epileptic activity was noted, there were large spikes in the activity in Vivian's frontal lobe. Abnormal activity in Vivian's frontal lobe had previously been associated with a marked regression in her behavior, so the doctor increased one of Vivian's seizure medications in an attempt to address this.
Vivian is highly bothered by the feeding tube in her nose. She refuses, however, to cooperate enough with a swallow test for us to feel that we could remove it and give her all nourishment and medication orally. We have decided to have a g-button inserted in Vivian's abdomen so that she can receive her feedings and seizure medications through that if we are unable to administrate them by mouth. I don't view this as a setback but rather as a good thing that will enable us to eliminate one of Vivian's major irritants.
Most distressing today were multiple extended episodes of thrashing and agitation. Robert has been saying he thought these episodes were some sort of seizure, and today one of Vivian's nurses said she was thinking the same thing. Unfortunately, Vivian did not experience one of these events during her EEG so I think Dr. Matson is going to order an additional EEG that will be for an extended period (probably 24 hours). At this point we are so eager for some relief and some answers that we are willing to subject Vivian and ourselves to just about anything.
When we met with Dr. Matson this evening about the results of the EEG, he told us he had really pushed the neurologist about finding some medication to help Vivian. Dr. Matson told him that Vivian needs to get out of the PICU before she catches something and gets sick again, but that she currently is "unmanageable" and cannot be released either home or to rehab in her current state. We were relieved that Dr. Matson was looking out for Vivian's needs and ours so well.
Robert and I have had a long standing joke that if either of us ever leaves, that person has to take Vivian with them. Today during a particularly exhausting episode, I turned to Robert and said, "If you leave, I'm going with you." We both are acutely aware of our need for each other right now. I am so grateful to have Robert at my side through this ordeal. I am particularly thankful to Robert's colleagues at Saxon/Morgan Stanley who have enabled him to be away from work these past three weeks.
Tomorrow is a big day. We anticipate having an MRI as well as procedures to insert a g-button and a PICC line (to replace Vivian's central line). Please pray that each of those events goes well and that Vivian tolerates the necessary anesthesia. Pray that Vivian's neurologists can identity the source of her agitation and successfully treat it with medication. Pray that the MRI shows no brain injury from the shock that Vivian endured. Praise God for the strength that He has given Robert and me, for the presence and support of our mothers, for the many delicious meals and other provisions our wonderful friends have brought and for the balance and joy that Will and Dorothy give us.
We love and appreciate each of you.
"I will praise you, O Lord, with all my heart; I will tell of all your wonders. I will be glad and rejoice in you; I will sing praise to your name, O Most High." Psalm 9:1-2
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!