Wednesday, June 30, 2010

Update on Vivian - 6/29

IMG_0664
The atrium in the entrance to Medical City Children's Hospital

Robert and I met with Dr. Matson, the head doctor in the PICU, today. The three of us sat in his office while Dr. Matson went over Vivian's chest x-rays and lab work numbers in great detail and explained things very thoroughly. The meeting was very helpful, if a lot to take in at one time, and Dr. Matson has a wonderful bedside manner. I likely remember less than 10% of what he said, but essentially Dr. Matson told us that Vivian is "dangerously ill" but that he expects her to pull through this. Vivian's CPK numbers (related to the dead muscle cells in her blood) were vastly improved; they're now down to about 1600. I believe that means her kidneys are out of danger. All of the fluids they have given Vivian, however, to resuscitate her on Friday and to help her kidneys the next three days, are taking their toll on her lungs. Vivian has had roughly two liters more fluid (!) in input than output each day (hence her swelling beyond recognition). Her latest chest xray looked awful, much worse than when we arrived, because of all this extra fluid. They added another diuretic, however, and today was the first day Vivian's output exceeded her input. This is very good news. With all things optimal, the doctor hopes to work Vivian off the ventilator by the weekend. If any complications arise, obviously that could push that date into next week.

We also consulted with a geneticist today. The PICU physician told us that the cause of this event could possibly be metabolic rather than an infection (though her blood work also presents a good case for this being an infection). I thought that we had ruled out a genetic issue as the source of Vivian's developmental delays, but evidently the technology is much better now that it was 10+ years ago when we last looked down that road. This geneticist wants to test for a few things that might predispose Vivian to some factors that might have led to this episode (sorry for the poor explanation - I was lost by this point). The tests won't come back for 7-10 days, but the geneticist said given that we're going to be in the hospital for several weeks to a month, that should be fine. You might imagine that my heart fell into my stomach at that point. A month? Egad.

I would like to give a special thanks to someone I don't know named Lottie who left a comment on my blog. Lottie encouraged me to carry pictures of Vivian up to the hospital so that Vivian's doctors and nurses could see what Vivian looks like when she's not sick. I printed five pages of snapshot collages of Vivian at school and home, with her beloved cat Percy and baby doll Sarah, etc., and hung them on a wall across from her bed. Every person who came into Vivian's room today stopped and looked at the pictures and commented on what a precious girl Vivian is. The pictures were especially helpful when the geneticist met with us this afternoon, as she pored over each one.

Obviously I am WAY in over my head trying to process, much less relay, all of this information. I trust that we are in very good hands and that God has a plan for our sweet Vivian.

Thank you all for everything. We love and appreciate each one of you who cares enough to read these updates.

"Let us approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16

25 comments:

Linda@ Lime in the Coconut said...

Oh Eloise! Last I read Viv had a broken arm but was smiling!

I am SO sorry for this terrible turn. My heart and prayers are with your family and precious Viv!

Sweet baby girl.

JMW said...

Thanks for the update, Eloise. Thinking of Vivian often. My mom is still in the hospital as well (since May 28), so I know that feeling of "When will we be able to move on?" But, we have to step back and just be thankful for the little pieces of progress our loved ones achieve each day on the road to recovery. The photographs were a wonderful idea. I will continue to pray for your sweet girl, as well as for you and Robert and your other children. May God give you strength during this difficult time. Prayer is powerful, I truly believe that now more than ever.

EntertainingMom said...

Oh we've never met but I wish I could put my arms around you and give you a great big hug. Chin up... hang in there sweetie... It's a long road but the prognosis is good. Please take care of yourself as well. You'll be better able to help Vivian if you are well rested and well fed. XOXO

sevenalstons said...

Thanks for the update. Everything sounds really encouraging :) I was interested to hear that genetic testing has improved in the last 10 years since we have a daughter with special needs. Genetic testing ruled out tons of stuff and we still have no answers as to why she has the challenges she faces. Maybe more genetic testing is in order. We are still praying for your precious daughter and your family.
Hugs from upstate New York

bevy said...

Goodness, Eloise. I wish so that this was close to being over and that Vivian was going back home sooner rather than later. Still lifting her up in prayer.

How are Will and Dots holding up? We often forget about siblings...

ironbabs said...

Eloise, I stay up nightly to wait for these updates so thanks for taking the time to provide them (I didn't quite make it last night!). My heart and thoughts are with you all daily and I'm so sorry sweet Vivian is having to go through this. Prayers for the wisdom of her caretakers and for the comfort and strength for the rest of you.

Vivian is lucky to have such strong and loving parents.

Barbara

lottie said...

I'm SO happy you brought pictures of Vivian to the hospital...it brought tears to my eyes...it makes so much difference, doesn't it? After a few days on a ventilator Stanley's face changes beyond recognition & I want everyone to see the real him.

here's a happy photo of my cute boy :)

http://www.flickr.com/photos/32windsorgardens/2387745475/

We had new genetic tests done this January...they took two skin biopsies...I hear it's the "newest" thing...is this what they're thinking of doing?

praying for everyone...
love
lottie
*ps. I've been "following" you for awhile, I used to post on twitter as "lottietea" & chatted with some of your other regulars...we moved across the country this year, husband is military & things have been crazy so I stopped...but still reading! :)

Mary Elizabeth said...

Sending more prayers your way...

The Spillman Family Blog said...

Eloise,
Still praying for Vivivan and your family.

Cast your cares on the LORD and he will sustain you;he will never let the righteous fall.Psalm 55:22

Erin said...

Encouraging news, and I wonder if the genetic testing might offer you some other ways of treatment in the future? Hugs to you, and hope too. From my heart to yours ;)

Maureen said...

Eloise,

Vivian, you and your family continue to be in my thoughts and prayers daily. Tremendous amount of information to process, thankfully you have your husband, family and friends to support you during this journey.

Take care of yourself.

M

Maggie said...

More prayers as I write. Hugs.

Sherrie said...

Eloise I hope the Drs are able to find the answers they are seeking to help with Vivian's recovery. I will continue to pray for all of you that Vivian's health is restored. God Bless you and your family.

lmk said...

Obviously Eloise- You have our prayers! WHat else can we do????

aoscarborough said...

Big hugs to all of you Eloise! John and I are checking here constantly for updates and are so thankful that you make the time to write them. You all are in our thoughts and prayers daily. Please, please let us know if there is anything we can do- we could be there in 3 hours!

take care.

Carolyn said...

we check your post daily and pray for quick and complete healing. Dorothy showed us wonderful pictures of the whole family.
Carolyn & Mike Hendricks in Whitefish, Mt.

Mary Kay Coleman said...

Dear Eloise, thank you for your posts as they provide an opportunity for us - both friends and strangers - to better understand Vivian's illness and the challenges she and your family and those who tend to her in the hospital face each day. This enables us to be more earnest and specific in our prayers for all involved. I hope it comforts you to know that you are not alone on this journey.

Mona said...

Eloise, it sounds as if this journey may be a long one for your family. It also sounds as if Vivian is being well cared for, so do take some time while you are able for yourself, Daddyman, Will and Dots. Allow others to assist you. You need to step away from the hospital for a break now and then so that you are able to rest and process everything. Know that Angels are all around your sweet Vivian. Thx for the updates. Continued prayers from MO. xoxo

fleur de lis cottage said...

Lifting you all up in prayer!

3 Peanuts said...

Eloise,

I am thinking and praying for you several times a day as is Dave. I even asked my bloggy reader today to lift Vivi and your family up in prayer.

Vivian's prognosis sounds good. But it sounds like it is going to be a long recovery. You need to pace yourself for that. Please take car of yourself. I know that is easier said than done.

As needs arise if there is ANYTHING at all I can do....I am here. I will come to your town to help you...REALLY I will.

Kim

sains said...

We continue to keep Vivian in our thoughts and send our love to you and the family.

xoxo Kim, Steve, Claire & Ross

Mrs. S. said...

I have been following your blog for quite some time now and am praying for Vivian and your family. You all seem strong and this will only help Vivian recover...she is so blessed to have you all in her life and she will be strong with you guys pouring out your love. Our family will continue to send positive thoughts your ways as well as oodles of prayers. I am glad someone suggested the photos. My good friend did that while her daughter was in the hospital with rheumatic fever...it helped all of those people KNOW the person lying on the bed under their care...she told me it really made them all realize the child in her healthy state and made them want to work harder to care for her.
Best wishes for a speedy recovery,
Lynn Schadler
Wyomissing, PA

Dianne said...

PRAYING FOR ALL OF YOU DAILY!

pink green & southern said...

Eloise, I am praying for your entire family. Take care of yourself. You know I think the world of sweet Vivian.

AnnieMac said...

Thank you for sharing updates on Vivian. I will continue to pray for her recovery, your family, and the doctors.