Tuesday, July 20, 2010

Update on Vivian - 7/20

Vivian holding Baby Jesus and watching Clifford on TV (sort of)

I'm not sure why some days are more exhausting than others.

Vivian had a good day today. The doctors have eliminated all sedatives during the day in an attempt to reestablish Vivian's day and night cycles (which have always been a bit blurred, even before this hospital stay). We were able to get Vivian into her stroller several times. We walked her around the PICU block on each occasion, and on the last Vivian sat in her stroller afterward for an extended period. Vivian took quite a few steps; she was completely supported by Robert and the physical therapist, but she was bearing her full weight on her legs. I fed Vivian half of a jar of baby applesauce, and she ate that very readily.

When Vivian was in her bed, however, there was a lot of kicking and complaining. I think that Vivian is generally uncomfortable, so she asks to have her socks removed, then decides that didn't help and requests to have them put back on (same with being covered with a blanket, having someone hold her hand, etc.). Vivian hates the restraints on her hands and keeps asking us to "take off those rabbits" (I have absolutely no idea why she calls them that). Most concerning to me today was Vivian's inability to look directly at anything and focus. Vivian is able to identify things that I hold up (a stuffed Rudolph, her baby doll Sarah, etc.) so I know that she can see, she just looks past things most of the time. In general Vivian is very easily overstimulated by all of her senses (keeps saying noises hurt her ears, can't abide for even a band-aid to be on her skin, etc.) so perhaps the lack of eye contact relates to that; I don't know.

Robert and I were discouraged when Dr. Fanning told us today that it would likely be the end of the week or the weekend before Vivian is discharged from the hospital. I know that being home will have an entirely new set of challenges, but I am so weary of her being in that PICU.

I'm sorry to be so whiny tonight. I think I'm just tired.

Please pray that Vivian would begin to make eye contact and look at things directly. Pray that Vivian continues to gain strength in her legs as we get her up and walking again. Pray that we could expand the types and amounts of food that Vivian is able to receive orally. Pray that Vivian ignores the belt protecting the g-button and port on her abdomen so that those are able to stay in place. Praise God that Vivian's latest screen for the C Diff gastrointestinal infection was negative. Praise Him for the strides that we are seeing in Vivian every day. Ask Him to provide me with a new burst of energy, hope and strength (Robert, predictably, is still holding up well).

Thank you for reading these updates and faithfully praying for Vivian. Your thoughts and prayers have been much needed and appreciated.

"I will praise the Lord, who counsels me; even at night my heart instructs me. I have set the Lord always before me. Because He is at my right hand, I will not be shaken." Psalm 16:7-8


Dianne said...

May God bless you and Robert and give you wisdom and strength in the days ahead. Vivian looks so pretty and seems to be doing so much better. Praise God ! We are holding all of you in prayer at my house. Hang on, she's almost home.

Mona said...

Try not to be discouraged. Vivian is looking so much better! :) Such a miracle!! Prayers of thanks. She has to be on sensory overload, with the strange surroundings and so many med changes. Keep the faith. She's getting better each day!
Bless your hearts, I have no doubt you and daddyman are exhausted. You are such devoted loving parents. Hang in there. Praying for your continued strength and that you may return home soon.

Grove Gal K said...

I have read your blog and am from Dallas but now live in D.C. My best friend from Dallas and I own www.pineapplegrovegifts.com and have a little something for you and your precious daughter. Can you email us her favorite color and letus know if you want us to send to you (pls give mailing address) or Hopsy said we could send to her. Your family has and will continue to be in our prayers. grovegifts at gmail dot com

Beth said...

"My Presence will go with you and I will give you rest" [Exodus 33:14]. Praying for supernatural strength and rest for you.

What glory you have given Him!!


Sandra said...

I think you are weary and understandably so. She looks so much better to those of us who see one pic per day. It's hard to see improvement when you are in the situation so closely. You will re-energize. A night of rest for you, along with our prayers will make all the difference. We will all send energy your way. I think the lack of focus is due to all the meds, etc. I know I'm not a doctor, but I do believe she will improve. Prayers continuing for you, Robert and Vivian. xoxo

Christie said...

My friend, I don't think weary covers it. Life in the ICU is monumentally stressful and draining - and that's just the physical aspect. This does not even speak to the psychological and emotional impact it has.

You must give yourself an extra measure of grace while you wait out these last few days in the PICU. As hard as it is, use the encouragement of knowing how far she's come in the past month to bolster you through. Reminding yourself of all the good that has been achieved, from the moments when you felt your darkest - will surely help to give you the strength you will need.

All the rest, we will leave to the good Lord, who knows all our needs before we even utter a whisper of them to Him.


ramarr said...

Rabbits = Restraints?

Prayer = God's comfort!

Tami said...

Of course you're tired. This has to be exhausting for all of you. Don't be too hard on yourself.

I'll be praying that you all go home soon.

Isaiah 41:10


Maggie said...

No surprise that you're exhausted! I'll pray for your strength in the days ahead as well as for Vivian's continued progress.

Sharon said...

Vivian is looking so much better! I'm predicting that the recovery will come in leaps and bounds now that she is able to be mobile. I would think that a hospital room, with all it's gadgets and action is probably very much over stimulating for a child like Vivian and that she's trying to "take it all in" and decide what icky thing to avoid looking at. Prayers for you to get some rest, it is exhausting I know, for the entire family but especially you, the mother of a special needs child.

sevenalstons said...

God bless you Eloise... you and your family have been through so much. Vivian is seriously looking so much better in today's picture. The progress she's made in the last few days is amazing! I hope you are able to rest over the next few days. I know you are so anxious for Vivian to come home, but things are bound to be a little more hectic then... so rest up now if you can :)

Carrie said...

I am a friend of Cheryl's from her neighborhood and have daily been following your family's journey since the day she was admitted to the hospital. Thank you for sharing your journey...the good, the bad, and the...well, we'll just say not so lovely. My prayer for you today is for one of peace and encouragement...that transcends all understanding.

sharon protzmann said...

Thanks, once again, for your insightful update - even in your weariness. Be strong and know the powerful undergirding of all the deep prayers being offered for Vivian,you, Robert and your precious family. I'm so glad your mom is here. Please tell her I'll call her. Lots of love - Sharon

sharon protzmann said...

Thanks, once again, for your insightful update - even in your weariness. Be strong and know the powerful undergirding of all the deep prayers being offered for Vivian,you, Robert and your precious family. I'm so glad your mom is here. Please tell her I'll call her. Lots of love - Sharon

Debbie K. said...

Oh Eloise, you have been so brave and it is okay to be weary. You are only human. Your testimony of faith has been inspirational to all of us. I'm not sure how I would hold up in a situation such as this.
Vivian looks so good and I believe all the medication and procedures have made her a little more sensitive and she will be more alert once all the medication has left her body. Don't despair about her distance right now - Vivian has built a protective shield to keep from being in pain and so scared.
Thanks for the updates. As always, keep your chin up. There are so many who don't post, but are still praying. (((Hugs))) ~ Debbie K.

Sherrie said...

She is looking good Eloise! I am glad she has made so much progress and that the c-diff is gone. I pray for continued recovery. God bless you all.

JMW said...

Don't feel like you have to apologize for expressing your thoughts - I don't see it as complaining. You and your family have been through so much in the last few weeks. If you can't share it with us, who can you? :) I'm sending more prayers your way - so glad to see a photo of Vivian sitting up with her doll.

Maureen said...

Sending my warm thoughts and prayers to you and your family. You are very strong and Vivian is very lucky to have such a wonderful family.