Thursday, July 22, 2010

Update on Vivian - 7/21

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Vivian in a rare quiet moment in bed today

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

14 comments:

Janet said...

I know you are overly ready to go home. But it will be here before you realize it. Maybe these next few days will make her stronger and a little easier for her get around the house on her own, She is little Miss Independent. God Bless your whole family.

Love and Prayers,
Janet Melton

Preppy 101 said...

I am glad the doctor wants to keep her a few more days. It will only make your transition easier. Better to stay a few extra days that suffer a setback when you get home. I so agree with the dr. about the withdrawls. Just think of what all has gone into her body. It can take weeks to completely clear out the system. Things are so looking up! I am so happy for you and your family. Prayers for you continue. {so glad sis is there}. xoxo

Ruby's Fairy Godmother said...

Praise God that Vivian is such a little figher! I love her spirit and spunk! She has come such a long way! I know you and Robert must be exhausted and ready to get her home...but I am thankful you have a few more days to prepare yourselves and you home to better meet her needs. I am so thankful you all have such a close knit family and that they are able to be here with you all...it helps so much and helps to keep a fresh persecptive on everything going on around you....plus fresh body to help with the little miss!
I am continuing to pray for this Sweet girl and for her sweet family!
Thank you dear Lord, for bring Miss Vivian thru this dark valley!
Norah!

Maggie said...

Bless you all! I continue to pray.

Denise said...

I am a long time reader of your blog, but I do not think I have ever posted. Vivian is just precious and I have been praying for her and your family. I just wanted to comment that when I read your post from yesterday (before reading the 7/21 post) I agree that Vivian's symptoms sound like withdrawal. Everyone reacts differently to narcotics and tranquilizers/sedatives and Vivian might have a heightened sensitivity to them. I bet once Vivian is home and comfortable with her surroundings she will do so much better. May God continue to hold you up through this journey. Your display of faith is such an honor to Him!

Dianne said...

Being home in your own bed makes everyone feel better. I just know she will continue improving once there.
Still holding you all in prayer.

Dianne said...
This comment has been removed by the author.
Debbie K. said...

Praise God for baby steps! Vivian is improving everyday, but it is so nice to know the doctors want her to stay a little bit longer rather than send her home too early. She looks so frustrated in her picture as to say "Am I going to ever get out of this place?" God Bless her! And may God continue to grace you and Robert with the patience and endurance you need to get through the daily trials. ~Debbie K.

bevy said...

Have just read about three days worth of postings... Continued prayer and especially for the doctors to have the best judgment in doing what is the best for sweet Vivian.

Mona said...

Praise be to God for Vivian's continued positive healing progress! I pray the Great Healer continues to heal sweet Vivian. I know you are all anxious to get home, you will be, in God's time.
Continued prayers for you all. Your hands are full, but please know updates are appreciated.
xoxo

Melissa said...

May G-d shine His great face upon Vivian, you and your entire family.

Many Blessings!

Melissa

The 5 Bickies said...

I am glad to hear that you were able to spend time with a Dr. that knows Vivian. As well, I am so relieved that Vivian's sensitivity and other behaviors are related to withdrawal. She has been a trooper!

We continue to follow along with you and pray for you and your specific requests. Hugs!

Kate said...

What a journey this has been. I continue to follow and lift your family up in prayer.

Best wishes,

Kate

Dianne Schuch Lindsey said...

i will pray for her daily.
i have one question, and forgive me if i am insensitive because it is not my intention. she is withdrawing from sedatives. why didn't they ween her?
i thought withdrawl was the punishment of addicts.
i have gone thru it and at any level, it is so uncomfortable. i was given drugs to keep me still and from having folks find me. once i broke free from my tormentor, i decided to just stop taking what i had been given.
you have electric shocks going through your arms and legs. sweating, vomiting, those are the worst side effects. but even a small withdrawl is horrible.