Tuesday, July 13, 2010

Update on Vivian - 7/13

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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

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Sweet Vivian during her EEG

15 comments:

Dianne said...

My dear Eloise you have had quite a day today. Sweet Vivian will be alright. You must pray believing! I am so sorry you all have been through so much.I continue to pray for your entire family.

Janet said...

Eliose and Robert, we have to believe that precious Vivian is getting better. I get off ESY at noon and starting Thursday I will be free to help out in anyway you need me to. I love that little girl and would love to help if you could use me. I certaintly don't want to be in the way, so you just let me know if there is anything I can do and I MEAN IT! My home number is 214-275-8721 my cell number is 214-384-6342. I was just trying to give you as much time that you needed to be with her.So Thursday I would love to come see you and Robert. Let me know.

Love and Prayers,
Janet Melton

Heidi said...

We continue to pray for all of you -- Vivian, Robert, Will, Dorothy and you, as well as all of those who are surrounding your family with love and support. It is a real gift to those of us who are able to support you with prayer that you share your journey with us all. Thank you for that. God bless and best wishes for a continued healing.

Jenny said...

What an eventful day! Thank you so much for your daily updates. We're still praying and are so thankful for the Lord's care for all of you throughout. We're going on vacation tomorrow, and I may not have internet access for the next week, but please know that we will continue to pray throughout each day for Vivian, you, Robert, her caregivers, and your whole family. Love and hugs, Jenny

Holly said...

Thank you for sharing your family's journey with us so we can pray for all of you. I pray for your stamina, for the Holy Spirit to continue to surround you, Robert, Vivian, Will, Dorothy, the doctors and nurses caring for her, and your extended support system, and for healing in mind, body, and spirit.
Holly

Me said...

God bless you all..Sweet Vivian especially. What a beautiful, remarkable girl. She is a gift, as is your blog. Always reading...and always in my prayers.

bevy said...

Oh Eloise, I have just read your last two posts and feel I am on an emotional roller coaster with you.... although many miles away in South Carolina. I have been sharing your story with my sister, who is a Physical Therapist in Trauma/ICU who is able to help me understand all that you are sharing with us.

I will be continuing to read while at an educational excursion to St. Augustine, but may not be able to comment. You know my family's prayers are still with you, Robert, and sweet Vivian.

lottie said...

You are blessed in so many ways! Having your mothers there is a wonderful support. :)
We've been through the PICC (and a Broviac...or is it the same thing? I can't remember now!) & while it seems a bit scary, it's worth it to not have to change the iv site every couple of days. Stanley has very sensitive skin & some of the tapes they use cause his skin to blister.
Stanley also has the g-tube; this is a great help to avoid aspiration from food. The therapists will be a great help to Vivian when she is all better & ready to eat.
Hang in there...hospital stays are a real pain in the tush...but when you are all home it will be almost like the pain of labor & delivery...you remember that it was hard, but you forget the worst of it & you are SO happy to have your baby at home! :)
God bless!
love
lottie

Maggie said...

I pray for Vivian's recovery from these agitated episodes, for your and Robert's strength. Thanks be to God for grandmothers, for supportive friends, and for skilled and compassionate care providers.

Sunny said...

Eloise,

You are a strong, loving, faithful woman, mother and wife. I am amazed and inspired by your strength. Your husband, as well, is wonderful. I am continuing to pray for you, your beautiful family, and most especially, Vivian! She's a fighter with an indomitable spirit.

Maureen said...

Eloise,

At times like these, you need to be thankful for what you have in your life, i.e. your husband, your wonderful family and friends and the incredible health care that Vivian is receiving. I continue to think and pray for you and your family on a daily basis.

Take care.

Kay said...

I remember that Kaylin did not like her n-g tube either. Though she was supposed to come home with it in place, she managed to rip it out the night before her release from the NICU! So if that teeny preemie could do it, I can only imagine how hard it is to keep it in place for Vivian. Prayers for successful of PICC liine and g button.

Jan said...

Holding you in my heart and prayers today. May the tests and procedures go well, and bring Vivian ever closer to full recovery. I so admire your strength, sense of humor and faith through all of this.

Marty said...

Sweet Eloise and Robert -- I am praying for you today and every day. But, in particular for answers and guidance. I pray that the tests go well today and that your precious Vivian is able to endure each test so that the doctors can best know how to treat her so that she can improve enough to go home. Please know we are here for you if there is anything we can do - nothing is too big or too small.
lots of love and hugs,
Marty and Myles

sevenalstons said...

I just got back from vacation and couldn't wait to check on Vivian ~ quite a lot has happened in the last 10 days! I've continued to pray for her and your family and hope the MRI and second EEG (if she has to have one) go really well.
Hugs from upstate NY