Friday, June 13, 2008

Jessie Update in Pediatric ICU

Today was a long day in the PICU. We were up there most of the day, except for some breaks for a bite to eat. Jessie is about the same as yesterday, maybe a little bit more alert. She remains heavily sedated and she is in obvious pain. She told us that her head hurt (scalp only...the brain has no nerves) and her throat (from being intubated).

The thing that is hardest for me, is that she is obviously scared, and I can't pick her up or give her a big hug. Her head is still to the right, and taped flat to the bed, so she still can't move her head. It must be an awful feeling to feel like you are held down by your head...I can't imagine.

Despite some reports from the media, Jessie is NOT sitting up and talking. I don't have any idea where that report came from. Jessie is still in bad shape. She is improving, but there is a long way to go. I'm sure we will see more improvement tomorrow.

We saw more movements on the left side today. These are small movements, and we are very excited by them, but the left side of her body is completely limp. This was to be expected.

She did talk a little today, but she was hard to understand. She said "Papa" - this is Kristi's
Dad. She likes him to sing to her. She said "Daddy", "Mommy", "IV Out", "I can see, but not very well." (one eye is swollen shut), and because of the surgery, she will only have half of her field of vision in both eyes).

She puckered up and gave us each a big kiss!!!



It was a hard day in the PICU. A little girl named Faith went to live with the angels today. She had sever hydrocephalus. She left her mom, dad, and twin-brother (Christopher) to carry on here. We all cried today with them. Please say a prayer for this family.

There is a family from Mexico City here, and their 11-month old son, Darel, will die unless he gets a liver transplant soon. We cried and prayed with their family tonight. Please say a prayer for Darel and his family.

I'm sorry for such a depressing blog today.

Al, Lynn, and Jodie Miller came up to visit Jessie today. Jodie had a Hemispherectomy 15 years ago, and is starting college in the Fall. She is a sweet girl. Despite the hard day, we ended on a good note. Seeing Jodie, reminded us of what Jessie can be someday. I've attached a picture of Jessie tonight, then us with Jodie.

We went out to eat with the Millers, and Jodie was brainstorming (or half-brainstorming as the case would be) ideas for new shirts to be sold to support The Hemispherectomy Foundation. Remember, these ideas are coming from an 18 year-old girl with only one cerebral hemisphere.

1) I only have half a brain, what's your excuse?

2) Anyone with half a brain knows that!

On another note, the brain surgeon, whom Jessie wrote "Texas Tech" on came by to visit her today. What a nice guy this one is. Maybe he'll see this and give us his thoughts on the best way to scrub permanent marker off your forehead.

Good night and God Bless you all for your support.

Cris



27 comments:

Anonymous said...

Thanks for taking the time after a long and I'm sure exhausting day to update us. Know that more people than you can imagine are praying for all of you!

The Meiers said...

Please know we are still praying for Jessie and have faith He will see her through this difficult time and that He is holding you all in the palm of His hand. It is so tough to watch your child be in any discomfort, but soon you will be looking back and be thankful she went through it and it's behind her and you all. It will get easier. Soon she will be participating in therapy and getting stronger. Hang in there. We're all cheering & praying for Jessie!! High fives from Zachary's lefty to Jessie's :)
Love and prayers, Jason, Mary Lou, Zachary and Lexi Meier

Mary Poppins said...

Now I can go to bed and rest peacefully knowing that Jessie is doing WELL! We are all living for your every blog and pictures - thank you for posting them for us. Y'all look wonderful and it is so nice to see Jodie! Hi Jodie! You are our hero!
Jessie, keep sleeping little angel. You are healing and getting stronger. I love you, my pink friend - Caren

Mary Poppins said...

Tonight I will pray for Faith, Darel and their families. Thank you for telling us their names. I can't imagine their heavy hearts. You have so much strength to share with them.

Anonymous said...

We love you guys... the road ahead is a long one... but we are here with you if you need us..

We love you...get some rest... love Todd and Susie

jazzy102707@yahoo.com said...

hello to you and to the family my prays is with you and you daughter my wishes that she makes a speedy recovery and my church lighthouse bapist church is praying for your family . 2 years ago this 27 of this month my daughter was in a very bad car wreck that my grandson age 1 only 9 days from his second birthday when home to the lord. left my daughter with head injures and had 9 surgeries and died three times and revided three times she lost both of her legs she was 22 now she just learn to walk with her af. legs and a walker .just got married so i let you to her in the lord hands he will see you thought the darkness because he the light of the world myname Trina Hall and my e- mail is jazzy102707@yahoo.com you can sent notes i 'm here if you need a friend .

Anonymous said...

Kristi this is Lara from work. I am sure you are fast asleep but I wanted to let you know that we are all praying for you and your family. You are a strong person and jessie seems to be the toughest kid I think I have ever met. Her strength and courage has made me take a look at myself and I thank her for that. She is an inspiration and I can't wait to see her when you guys come home.Take care of each other and that amazing little girl. We will all be thinking about her and let her know she is now a superstar to everyone across the United States.Much Love, Lara Sanders

Anonymous said...

May God sustain you through this long recovery. Enter into His rest...remember His burden is easy and His yoke is light. He will not make you carry this alone, continue to "Let go and Let God." We are still praying for you and for our sweet girl. Thank you for your updates so we can feel close to you guys and have little insight to know what you need prayer for the most.

In HIm,
Kim Brewer
NRF

Anonymous said...

It is os good to hear how Jessie is doing. We are continuly praying for you all. We are specifically praying for you Cris and Kristi to have peace and continued strength. We are praying for Jessie to recover quickly enough to be able to move her head and not have it held down anymore and for her to have a peace and feel God's arms aroung her.

Anonymous said...

Thank you for keeping us up-to-date on Jessie progress. I know it a hard and logn road but Jessie will make it through with much success and so will you. I look everyday on the blog to see how she is doing and each day i give praise to god for the miracle workers he has given Jessie. The was a nice thing to read about Jodi and i wonderful she is doing. That certainly gives you the look of the future for Jessie and how bright her life will be. I know it will be hard work but your little angel has the strength and will power to make it through anything. She has proven that already. I will continue to keep Jessie and her wonderful family in my prayers and will continue to pray for all the children at the PICU. Stay strong and get as much rest as possible, because i have a feeling she is going to keep you on your toes very soon.

Anonymous said...

Much love and Prayers being sent your way!

kitykity said...

That must be so hard, knowing that even though Jessie is taped down, she is doing okay, while you are meeting other parents whose children probably won't fare as well... we all have our crosses to bear, and it must be so sad to see so many children in the hospital for different reasons...

Kristin said...

Thank you so much for the update. I was thiking about you guys all day yesterday. I read your blog before going to bed but I couldn't find the words to respond.

The PICU children there and everywhere around the world have my prayers. I will specifically pray for Faith's family and for Darel and his family. I am so glad that you are there to comfort them. You are an amazing source of strength and courage.

I will also be praying for you guys throughout the day. Praying that Jessie can finally move her hear to midline, that she can come out of sedation just a bit more than previously, that VERY SOON she can be in a regular room there, and that she is @ KKI sooner than expected. I will pray that you continue to have strength and peace. I know the road you travel is a tough one. Lean on the Lord...let Him be your rock and your shield. I will pray that God give you continued AMAZING strength and courage to not only minister to your precious princess, but to minister to the other parents whose children are sick as well.

Cris and Kristi, thank you for the opportunity to read your blog. It is an amazing way to connect with your family. Jessie is a special angel and has shown so many people so many things.

Just know that we are continuing to lift you up in prayer and send our love to you all. Thank you for taking the time to update this blog when you can. I was so relieved when you updated last night, even though parts of it were definitely heart-wrenching.

Many blessings to you today. I know Jessie will be amazing today!

Take care!

Continuing to pray for Jessie's speedy recovery...

Kristin
Grapevine, tX

Anonymous said...

There are no words but prayers for everyone you have touched, will continue to touch, and for your continued faith. We check the blog a couple of times a day. Thank you so much for keeping us informed. Love and tons of prayers, The Lawley Family

Anonymous said...

We are continually praying for you all, and will also for Faith's family and for little Darel to get a transplant. Your testimony of strength from God and glorying in HIM, giving others, in their time of need, has and will continue to bless so many people. Last night, Caren updated us a little more about Jessie, and it was even better when she emailed all of us here in Aledo, that you had posted 2 pictures last night on the blog. Cris, Kristi, and Jessie, we think of you and pray for you daily. Great is THY faithfulness Lord unto me; HIS mercies and blessings are new to me each day. May GOD's mercy and blessings pour over you and sustain you, minute by minute, hour by hour, day by day. And may that sweet, bright ray of sunshine Jessie, be able to move her head so she can look up into your eyes! :)
Love from your hometown,
Michael and Angie Owen

The Walkers from Blackshear GA said...

We learned of Jessie from our friends Joe & Tonya Matlock (their son Jacob is in Jessie's grade at school). We are following her through the blog and news reports, praying, and rejoicing at the Lord's mighty hand at work!

Anonymous said...

Thank you for the update. I have been praying specifically for Jessie's eyesight. I pray she will beat the odds and have better eyesight after the surgery than expected. Thank goodness she says she can at least see some right now. I know little Jessie must be so scared, like you say, but she does know you're there and feel your comfort.

I do not know you all personally but this story touched me deeply (as a mom, as a human) and Jesie and you are constantly in my prayers.

Love,
Crystal Lawson in Frisco, Texas

Cameron's Blog said...

Hey guys are am right there with you and feeling your emotions. (This is exactly one year to the day that Cam's had her surgery). I look forward to your post and updates so that I know things are going well, keep em coming. Glad that you were able to get out with the Millers for some emotional break from the stress. Hang in there and God bless. The Motts

Anonymous said...

Kristi, Those of us who work with you have always seen the strength of your character and known that it takes 6 regular people to do the work of one Kristi. Obviously, God gave you a special gift in order to prepare you to so bravely face Jessie's journey into the hearts and lives of so many people around the world. You can see God's hand in so many things that have happened with Jessie that it is obvious that there are great things in her future.

Our hearts and prayers are with all of you, and all the families of children in need.

Leslie

P.S. Would someone please post instructions on where to find the pink Jessie Hall bracelets?

grooms family said...

glad to hear from you all after a very tiresome day -god bless you --glad to hear she is doing so well- remember- little steps in the right direction are huge!!! we are praying like crazy for jessie and your whole family --stay strong--she will continue to amaze us all-the grooms family

Anonymous said...

Thanks for the update.We still will be praying for you all.

Jan said...

I just want you to know that everyday I read your updates and feel some of your pain and only a bit what you are going through. We are still trying to come to gribs with Keane being diagnozed for the second time with cancer. It helps to know that GOD IS IN CONTROL. I am praying for jessie and your family. You are amazing people.

RN2B said...

I am still thinking of Jessie and your family.

I pray for a nice recovery and for her to be a happy and healthy little girl once again.

I know what it is like to have a rare neuro disorder and come through it well!

Marieke (Transverse Myelitis sine March 18 2004)

Anonymous said...

Hang in there Jessie! You are such a fighter! These are tough days but you will get through them. Cris and Kristi - you are in our thoughts and prayers along with the families you mentioned. Thank you for the pictures and the updates.
Blessings,
The Britton Family in Aledo

John said...

Jessie's Mom & Dad, My prayers are with you all. We smetimes don't realize how much courage we have within us, until something like this takes place within our lives, both individually and collectively as a family! Courage arises and Faith prevails!

It looks like the Lord sent Jodie into your lives to give you a glimpse of Jessie's road ahead. When you see Jodies smile and her eye's gleam with God's love.

She gives hope to all who meet her, I am sure. So will Jessie not only give hope now to those around her, but HOPE will eminate from her life towards everyone who meets her as she grows older.

I have spent many months equivilent, adding up to an 18 months stay at Johns Hopkins. It is hard to watch some famillies have to say so long for now to their little one's. But as was said, they go to be with angels and we know they go home to be with Jesus!

I often wondered why was I allowed to live, when my parents were told, "he might no make it!" But we all have a purpose on this earth for life and to help others see that God lovrs them too!

Keep the faith, and know that your lives are carried in prayer and love!

John Little
Orlando, Florida

Kristin said...

By the way...I love the T-Shirt ideas! What a superstar Jodie is! Another amazing example of God's power!

Holly said...

My daughter was in john hopkins for a whole week in 2006. i know how uncomfortable it can be sto sleep in those chairs and how tiring it can be and how aweful the food can be in the cafeteria. i hope she recovers quickly i love the teeshirt ideas