Monday, June 28, 2010

Update on Vivian - 6/28

IMG_0658
Some of the machines by Vivian's bed. The giant "caulk guns" on the right are medications that are administered into her IV over a predetermined period of time as the gray disk slowly compresses the large syringe

Vivian had a quiet day.

She had to have a blood transfusion this morning because she was anemic. Her magnesium and phosphorus levels were also low so they added those minerals to her IV. The amount of muscle protein in her blood continued to trend in the right direction; tonight the CPK number was down to about 2800 from over 10,000 Friday and around 5,000 yesterday. I found out that "normal" is around 80 - yikes. They have Vivian on Lasix to try to help her kidneys flush the toxins from her body, but the Lasix infusions were causing her blood pressure to drop. So they switched her to a continuous drip of a small dose of Lasix and she seems to be tolerating that much better. Vivian still has pneumonia and infection in both lungs, and though her lungs sound a little better, the chest x-rays don't show much improvement. The physical therapist visited today and worked with Vivian's feet and legs a bit. She also fitted her for little boots that will keep her feet from becoming dropped, a common side effect from lying in bed for extended periods. Nothing has grown yet in her blood cultures to indicate what made her sick.

Vivian's much-loved neurologist stopped by her room tonight. It was so nice not only to see a familiar doctor but to see someone who knows Vivian as she really is. We have been so pleased with Vivian's PICU doctors, but they only know her as a very sick, sedated girl, not as her sweet and funny little self. It was good to visit with Dr. Riela, and we especially enjoyed the time when he and the attending doctor were in the room discussing Vivian's situation with us. They are hopeful that Vivian's high fever did not cause any brain damage because she never lost consciousness. Their consensus seemed to be that no one thing led to the crisis on Friday, but rather several events likely collided to create the "perfect storm."

I cratered a bit this evening. I think the stress of the past week and the realization of how very sick Vivian is finally caught up with me. Vivian's face is very swollen from the IV fluids, and she doesn't look anything like herself, so that is very difficult too.

We still have a long way to go. Thank you for walking through this valley with us.

“Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed.” Psalm 57:1



35 comments:

Jenny said...

We're praying, and will continue to do so! Thank you so much for keeping us updated! <>

Kimber said...

We are for you all! I know you can feel the love and strength from our Heavenly Father. Remember that His strength will carry you through these days! One day at a time! Praying for you and Robert and for Vivian's continued recovery!

Love and hugs!

sevenalstons said...

I woke up this morning and came straight to my computer for an update and was so glad there was one. Thank you for keeping everyone updated. I'm so happy to hear Vivian is continuing to head in the right direction but sad to hear the toll it's taking on you. I will continue to pray for both Vivian and you and your family. I hope you are able to get some rest and that the updates are able to continue telling of Vivian's great progress. Looking forward to hearing that she is well enough to go home!
Hugs from upstate New York

Beth said...

We are praying for Vivian's full recovery, and you and Rob's strength as you walk this path. You are surrounded by the love and prayers of many. Continue to lean on your heaven ly Father. Praising God for the mercies already visible!

Kate said...

Oh Eloise...this continues to be such so shocking...even across the miles. We will continue to pray that the doctors can zero in on the bad germs and that Vivian's lungs clear. We will also pray for your strength...and give thanks that the lasix is helping in cleaning out her muscles.

Take care friend,

Kate

lottie said...

Hang in there! I know how hard this is...been here many times with my Stanley. :) It's been years (praise God!) since he was last in the hospital...the hardest part is how everything seems to go wrong before they finally get better.
I usually bring pictures of Stanley to hang on the bed so the nurses & doctors can see his usual smile. I've thought exactly the same thing you mention, that it's nice to have a doctor who knows what they are usually like. :)
Praying for you and family.

love
lottie

Sharon said...

My heart aches for you and your family. Thank you for the updates, those of us who follow your blog are praying for you all. The mercy of God and the miracle of modern medicine is an awesome thing...Sharon

The 5 Bickies said...

I am so thankful for your update! I am also thankful that your neurologist and PICU doctor were able to spend time with you together. I am sure that tied together a lot of loose ends. I will continue to pray for Vivian's healing and your family's strength as she heals.

Hugs to you!

plaidchaos said...

Praying, praying, praying.

Jeremiah 29:11 (New International Version)
11 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.

GrannySmithGreen said...

My thoughts and prayers are with you and your entire family. I know that you all must be experiencing all sorts of emotions. Please rest assured that God is in control and HE loves you all very much. You can do it, Vivian!

Jan said...

Thank you so much for taking the time to update us on Vivian's condition. May our comments and prayers be the gentle hugs and support that you need during this frightening time. Hoping this new day brings even more improvement and encouraging news.

Tami said...

Eloise,
If you have a minute pop over to my blog. Yesterday I shared about being in the fire.

You are definitely in the fire, bring refined.

Take care- Many prayers are being said for you, Vivian and Robert.

-tami

Meredith Travels said...

Thinking of you and your family.

Ellen S Carter said...

I have been keeping up with Vivian through FB. I want you to know i have been praying for her and your family daily. I got a message yesterday from a lady I worked for over twenty years ago. She volunteers at the Ronald McDonald House in Austin. She met your cousin who shared your story. My friend went on your blog and realized through FB that we were friends. I am sharing this story to let you know that people who have not even met Vivian are praying for her. May God bless you. If I lived close to you, I would love to help you. Thanks for keeping up posted. I hope Vivian has a good day and continues to move in the right direction.

bevy said...

How comforting for all of you to have Vivian's doctors with you... glad to to know his name so that I can life him up by name.

I am amazed that you have held it together for this many days. God is in control of all of this. Hard to remember, I know...

Bagels for Breakfast said...

I've been reading your blog for about a year now and have always enjoyed following the adventures of you and your beautiful family. As a mother who has experienced having a child in the ICU for several weeks, I can partially empathize with your situation, knowing how completely emotionally depleted you can find yourself. Sending lots of love and prayers for you, Vivian, and your family.

for the love of a house said...

Thoughts and prayers for you and your family, and for dear Vivian.

joan

Emily said...

I am glad to hear that Vivian’s neurologist was able to come by last night. It is always comforting to see a familiar face. I am continuing to pray for healing for sweet Vivian, as well as for strength for you, Robert, Hockey Boy and Dots.

kerri said...

Coming over from Hopsy's blog, our family in Canada continues to pray for Vivian's recovery and we send your family strength at this time.

Janet said...

Eloise, I know this is a hard and scary time for you and your family but, you are so lucky to have God on your side. You are extremely fortunate to have so many christian family and friends praying for sweet little Vivian including myself. To everyone who have posted these scriptures, they have even been helpful for me and I am sure they have helped others as well, keep them coming. If I am ever in need like this I would hope I would have these wonderful people praying for me.

Love in Christ,

Mom on the Run said...

Oh goodness, I've been out of town and am just catching up. I will definitely keep you all in my prayers and hope you continue to see improvement in Vivian's condition each day.

birdie blue said...

You and your family are in my thoughts and prayers!
~Molly

Roodman said...

Eloise- praying for your family. Please let us know how we can continue to care for all of you.

Lars Rood
Director of Stream Youth
Highland Park Presbyterian Church

pennythequeen/queeniep said...

Prayers and thought are coming your way... its so hard to see one of your own children suffer in the hospital... My heart is hurting for your family!

Sherrie said...

I am glad to hear that Vivian is holding steady. I will continue to pray for all of you. I wish I could be there to sit next to you Eloise and hug you and comfort you in person.

3 Peanuts said...

I am so grateful for the updates as it helps me pray more specifically for y'all. I saw the beautiful basket Hopsy brought you. That was sweet. I am itching to be there for you to bring you starbucks and a magazine and just sit with you and pray with you. You are in out thoughts and hearts and prayers.

Kappa Prep said...

I was so thrilled to read your email last night and see that Vivian's doctor came up to visit. What a welcomed reunion! It was so wonderful to see you yesterday and to meet Vivian's wonderful teacher. I am free all weekend and would love to come by again- I would be happy to stop by Starbucks or Sonic before and pick a treat up for you and Robert too. PRAYING for everyone!

Ruby's Fairy Godmother said...

Eloise, thank you for the update. I am praying specifically for the things you mentioned. Just know you and your family are being lifted in many prayers.
If there is anything you need, please do not hesitate to contact me. I am going to send you and email right now with my phone number on it....I am very close to you and can do anything you need or want.
Norah

Erin said...

I am still praying and Vivian is on my mind constantly. I am so worried! She is so precious. You must be so exhausted. I will keep checking for updates.

Sally said...

Eloise I am SO sorry.

I had looked at your blog last week and seen that Vivian had broken her arm but after intensive surgery was on the mend. I was really shocked when I came back this evening to find out recent developments. I am so sorry.

My thoughts are with you all. I'm praying.

With love.
xxxx

Brooke said...

Eloise, mom and I didn't realize Vivian was so sick until we read your blog tonight. Mom wants you to know that she is holding your family in her heart and prayers. She is praying specifically for healing for Vivian, and peace that surpasses all understanding for you and Robert.

I want you to know that I am also praying for you and your family, especially sweet Vivian. When I think of Vivian, I am reminded of that sweet and funny little girl I used to babysit.

With love,
Dolores and Brooke

Jane Rose said...

Tony and I and all your extended cousins on Robert's side have you in our thoughts and prayers. And if you didn't know, I'm the culprit at the Ronald McD House in Austin who forwarded your posts and made the connection between Ellen Carter and Pat M. Just proves how small the world is and how connected we all are...and that we're all in this together. We love you lots.

Summer Wind said...

I have been reading your blog for a while and have been on vacation for several days and have not checked my google reader, I am so sorry to hear about Vivian, I am praying and sending well wishes to you and your family.

Heidi said...

Eloise,

I am praying for your family and especially Vivian during this trying time.

Preppy 101 said...

We are all with you. Hope you can feel the prayers and love for y'all. xoxo