Blog

Livy's Hope Blog

Welcome to the Livy's Hope Blog!

PICU vs. Party

PICU vs. Party

Yesterday morning it was becoming pretty apparent that Livy was only getting worse. We have a certain amount of "emergency" medications for seizures we can give her at home before respiratory issues can arise. I had maxed out everything and she only continued to seize. Jon came home from work and we weighed out everything. Hospital stays for Livy are never short when it comes to seizures. I am not talking days but weeks and sometimes months long. We always do whatever we can to put off going as long as possible. We looked at each other and both knew it was inevitable.

The ER stay lasted from just before lunch until after 8pm last night. It had been over two years since we had been there for seizures. All those precious months of control. They did lab test, a shunt series, x-rays and an MRI. The only thing they found was that her sodium was running a little low (128). She tends to run in the low 130s but the dip below could be cause for increased seizures. After consulting with Livy's neuro up at Shands, they decided to start her back up on the seizure med we just finished weaning last month. She was admitted just after 8:00pm.

Jon and I got her settled into her room upstairs. By this time she had had over 15 seizures. They were coming faster together and the Ativan wasn't touching them. We knew we had made the right decision to take her in that day. I can't imagine the feeling of helplessness we would have been feeling had that been happening at home. I hadn't slept well at all the past two nights having been up with her so Jon took the first night shift last night. After I left, things went downhill fast.

After multiple efforts to get things under control, the nurses on the floor were no longer comfortable taking care of her. They quickly moved her to the PICU (pediatric intensive care unit) around 4am this morning. They were finally able to stabilize her. Her last clinical seizure was around 4:45am. She wasn't able to sleep much at all last night and was awake all day today. Her heart rate was up in the 150s and she was running a low fever this evening.

On the flipside, the girls had a Halloween party planned for this afternoon. Hailey was so excited getting ready for it and it would have been so difficult to cancel. Jon insisted that we still have it for her sake. This is our life, yin and yang, and life goes on. Jon and I have always tried our hardest to give both our girls what is best for them, as different as it may be. Jon was giving Livy his best at the hospital and I had to give my best to Hailey at home. It was pretty surreal setting up the party today. I did everything possible to keep my mind on apple bobbing and Halloween Bingo. Hailey and her friends had a really great time and for that I am happy. I don't think we will ever get over how divergent our girl's lives can be. All I know is that we did what we thought was right, for each girl, at that moment.

I will be starting my shift at the hospital tomorrow. For those of you that know how that goes, I am working up the strength and courage to get through. As always, we really appreciate your messages of support. We will continue to update as we can. We know many of you care so very much and we love you for that.

Hanging In There
Perfect Storm

Related Posts

 

Comments 15

Guest - Gary Parrish on Saturday, 27 October 2012 23:28

I so appreciate your updates. Although we've never actually met, I care for you all very much - especially Livy. I have been thinking about her all day and was hoping for better news. I am so very sorry you are all having to go through this again. I will continue to pray for Livy and keep all of you in my thoughts.

Gary Parrish

I so appreciate your updates. Although we've never actually met, I care for you all very much - especially Livy. I have been thinking about her all day and was hoping for better news. I am so very sorry you are all having to go through this again. I will continue to pray for Livy and keep all of you in my thoughts. Gary Parrish
Guest - The Cortes Family on Sunday, 28 October 2012 00:20

We know God is shining on Livy, maybe even more during these difficult times. We will pray for a short hospital stay for all of you. Sending you big hugs!!

Love and prayers,
Javier, Andrea, Arianna, and Bella

We know God is shining on Livy, maybe even more during these difficult times. We will pray for a short hospital stay for all of you. Sending you big hugs!! Love and prayers, Javier, Andrea, Arianna, and Bella
Guest - Amanda on Sunday, 28 October 2012 08:02

although we have never met I am new to the blog. I am praying for all of you during this difficult time. all the way from canada

although we have never met I am new to the blog. I am praying for all of you during this difficult time. all the way from canada
Guest - Stavria on Sunday, 28 October 2012 08:17

I will light a candle at church for Livy today. Reading your post brought tears to my eyes. I understand the yin and yang. We too live that life. You made the right choice.

I will light a candle at church for Livy today. Reading your post brought tears to my eyes. I understand the yin and yang. We too live that life. You made the right choice.
Guest - Deborah Telles-Palladino on Sunday, 28 October 2012 09:12

You have so much that you're coping with and I can only imagine the toll it takes physically and emotionally. You do it with love for the girls and each other! My thoughts are with you as you deal with this new challenge.

You have so much that you're coping with and I can only imagine the toll it takes physically and emotionally. You do it with love for the girls and each other! My thoughts are with you as you deal with this new challenge.
Guest - Theresa Henry on Sunday, 28 October 2012 09:21

I am keeping you in my prayers!

Terri
"Friend of Aunt Laurie"

I am keeping you in my prayers! Terri "Friend of Aunt Laurie"
Guest - Becky on Sunday, 28 October 2012 11:02

Keeping your family in our thoughts and prayers. May God continue to bless you and keep you in his hands.
Thank you God for All Children's Hospital and Shands. We are so Blessed with so many good hospitals in our area.
Love Becky

Keeping your family in our thoughts and prayers. May God continue to bless you and keep you in his hands. Thank you God for All Children's Hospital and Shands. We are so Blessed with so many good hospitals in our area. Love Becky
Guest - Margie on Sunday, 28 October 2012 11:47

I'm sending prayers for strength ... for all of you. xo Margie

I'm sending prayers for strength ... for all of you. xo Margie
Guest - Aunt Cindy and Jim on Sunday, 28 October 2012 15:19

We will keep you all in our prayers. May you continue to feel God's great love and strength. His miracles are evident every day.

We will keep you all in our prayers. May you continue to feel God's great love and strength. His miracles are evident every day.
Guest - Daddy & Diane on Sunday, 28 October 2012 16:28

We lit a candle for all of you today. What strength you both have.
Love you
Poppi & Didi

We lit a candle for all of you today. What strength you both have. Love you Poppi & Didi
Guest - Susan Sullivan MA on Sunday, 28 October 2012 18:51

I am keeping Livy in my prayers and of course prayers for you,Jon and Hailey.
I don`t know you personally, but I do know Grandma Vera.
She showed me the Tampa newspaper article quite awhile ago when she was at our senior center
in Mass...ever since then I have been following your blog. I will say the Rosary tonight for you all.

I am keeping Livy in my prayers and of course prayers for you,Jon and Hailey. I don`t know you personally, but I do know Grandma Vera. She showed me the Tampa newspaper article quite awhile ago when she was at our senior center in Mass...ever since then I have been following your blog. I will say the Rosary tonight for you all.
Guest - Lori and Bryan Cotton on Sunday, 28 October 2012 19:54

We love you guys, and know that you will make it over this hurdle as you have with so many others. Livy is a strong girl - she gets that from you and Jon. You are in our thoughts, and we wish we were physically there to help in any way. Please know that we are here for you at the other end of the phone anytime you need a shoulder to lean on. Love, Lori and Bryan

We love you guys, and know that you will make it over this hurdle as you have with so many others. Livy is a strong girl - she gets that from you and Jon. You are in our thoughts, and we wish we were physically there to help in any way. Please know that we are here for you at the other end of the phone anytime you need a shoulder to lean on. Love, Lori and Bryan
Guest - Mary Jo Ferretti on Monday, 29 October 2012 10:27

Livy is in my thoughts and prayers! Hugs to her and the family!

Livy is in my thoughts and prayers! Hugs to her and the family!
Guest - Lee Ann on Monday, 29 October 2012 10:36

I just had time to read my email. So sorry that you are in the hospital. I think that you did right by both your girls. I will be praying for you. Hang in there. Hugs and kisses to you and Livy.

I just had time to read my email. So sorry that you are in the hospital. I think that you did right by both your girls. I will be praying for you. Hang in there. Hugs and kisses to you and Livy.
Guest - Lee Ann on Monday, 29 October 2012 10:36

I just had time to read my email. So sorry that you are in the hospital. I think that you did right by both your girls. I will be praying for you. Hang in there. Hugs and kisses to you and Livy.

I just had time to read my email. So sorry that you are in the hospital. I think that you did right by both your girls. I will be praying for you. Hang in there. Hugs and kisses to you and Livy.
Already Registered? Login Here
Guest
Tuesday, 21 November 2017

Connect today and join us on
our journey of hope.

 

Facebook Twitter Pinterest Instagram Youtube Contact Us