Wednesday, January 7, 2009

We have been coming home each night to sleep and then going back to the hospital. Now that Lily is on the floor we are permitted to stay the night with her. I have not done this so far. I feel so guilty. It's just that we have another child, and even though she is a teenager she still needs our attention as well. Not to mention her physical therapy appointments that are still three days a week. I must have been exhausted last night; I slept through my 1:30am pump and woke up extremely uncomfortable about 4:30am.

So, we called the hospital this morning after change of shift, typically the Doctors make their rounds about 6am or so. Dr. Dilustro was in and said that they are going to do another CT scan tomorrow morning. After the CT they will decide on what to do next, if all looks well/good she may be able to come home. If the fluid is not draining as he had hoped (we know that she is draining some on her own) then I'm sure that he will be keeping her and we will then discuss her shunting options. Due to the area of the cyst, he said that if there is complete failure from the fenestration that he did on December 26th then she would need two (2) shunts.

Please continue to pray for our sweet angel... that she will not need the shunts at all and her CSF is flowing/draining as it should.

This is the hardest thing that our family has ever endured. For those of you that know us personally know the hardships that we have endured over the years with Tori. Ken and I are SO BLESSED to have baby Lily in our lives. We know that God is in control, he already knows how this will turn out and he gives us strength to make it through.

6 comments:

Anonymous said...

Hello Zoe, this is Christin from Dollar Tree. I am one of Lisa's friends. I have been keeping up with little Lilly's progress and enjoy reading about her daily. I will continue to keep you and your family in my prayers. I hope you get to bring her home soon. God Bless.

Carla said...

Zoe, I can so relate to what you are going through. While I didn't have a teen waiting at home for me, I did have a confused 2 yr. old. I am praying for Lilli & for you all to be home soon.

Lisa said...

Hey Zoe, I know how torn you can feel when you have 2 kids especially when they both have challenges to deal with. I only left Kody's side twice when Kody was in the hospital 3 times during and after his surgery. Poor Tanner did not know whether we were ever gonna come home and stay! Just hang in there and give Lilly a BIG HUG from me!

Anonymous said...

Hay there.I have Lilli and all of you in my prayers. God Bless all of you, Corri

Anonymous said...

by the way ,she's a beauty! I just want to give her a big smooch....Please tell Ken and Tori hi for me and to hang in there.Corri and Chris

unkpoet said...

Zoe, You continue to be an encouragment to us all as you walk down this road. Please do not feel guilty about not spending the night at the hosp. Not only do you have another daughter but you also have to get some real rest. I suppport your decisions to sleep at home. You'll know if and when to sleep at the hosp. I love you my dear so very much and continue to pray for you all daily!

love Stephanie