Tuesday, November 24, 2009

New Liver

Sunday morning Nesa was sleep when we got the call. A liver transplant nurse called saying they have good news.

First when we got the call I didn't think nothing of it because I was given a pager and thought it would go thou the pager so when this call happen and the nurse asked me questions like.

Is Nesa sick do she have a cold runny nose and so on and so on. I said, no, no, no, no and no to ever question.

She says well we have wonderful news we have a new liver for Nesa.

Soon as she said, that I nearly fall off my feet because remind you I wasn't sitting down I was walking though my house doing earlier morning cleaning while my girls was still in the bed then I was going to start on breakfast.

She asked has Nesa ate I said, nope she is still sleep she said, well go ahead and you all package and I will give you a call back in 30 minutes to tell you what room Nesa will be admitted to.

So I am running thou the house packing and yelling said, Nesa you go a new liver. She all happy she going to get her toys and all telling me what clothes she wants to wear.

30 minutes same nurse called, we was giving details on what to do.

So we arrive at the hospital around 11 am or so. They running tests x-rays, ultrasounds, blood work all of that. I was told she probably wont be going into surgery until close to midnight.

Her liver came from Oregon is all the information we was given. But, we also was given if we want to get in touch with the donors family I can write a letter give it to her transplant team and they will send to the donors family and if the family wants to get in touch with us they can respond.

But, all we know is her liver was fewn in from Oregon.

Monday morning 12 am/midnight November 23, 2009 Nesa was wheeled into the surgery.

I didn't leave the surgery waiting area. I slept right there on the floor and waited. They kept us updated by calling the phone that is localed in the waiting area to let us know what is going on.

The finally called, came at 8:30 am saying that Nesa is doing well and will be sent up to ICU shortly.

Around 11 am I finally got to see her because they had to do so much and we wasn't allowed in the ICU at that time.

I totally cried my eyes out seeting all those tubes in my baby. But, after awhile I got myself together and calm down but, I still find myself braking down.

While she in the ICU they want to montor everything from ultrasounds to x-rays to blood work and so on.

So they come in to do a ultrasound.
BAD NEWS the arthies and veins that is pumping blood thoughout the liver has a blood clot.

So they tell me the that she has to go back into surgery so they can fixed that.

So around 1 pm she is back in there and I am waiting and waiting. Mind you I don't care about no damn sleep I slept on the floor and wasn't even sleep it was like a nap.

So around 3:30 pm she is back in ICU this time I beat there to her room so I can see her come in though the doors.

They fixed it it's ok now.

As of Tuesday November 24, 2009 Nesa is still on the vent machine to help her breath they was going to take her off of it today but, due that Nesa has that lung disease her oxygen levels was dropping doing the night and they is concern about that and want the vent in until probably Friday or Saturday. Her blood work is looking good the liver is working and the ultrasound for today showing that she has flow thoughout her veins.
So all that is good.

The down part is that they is hoping that her lungs approve with the new liver and that she wont have low oxygen.

NESA - she is responding alot she cant talk due that she still on heavy meds and have the tube down her throat. But, when I say her name and tell her I love her she looks at me and shakes her head. She is able to point to where she is itching of where it hurts like feeling funny to her.

Me - I am hanging in there able to not cry as much as before. I've cried so much that my face looks dry and no matter if I put lotion on or not I dry the lotion out. But, I am hanging in there and watching my baby. Hate that she has to go though this but, it's good for her that she got a new liver.

I took lots of pictures a couple of before pictures and after pictures. I am not able to post them now because while I am typing this I am still at the hosptial. I wont be going home to get extra clothes until Friday or so then I can post pictures then.

Nesa has a scrap book she wanted to keep progress of her waiting for her liver and then when she get her liver. When we was at home Sunday she said, mom don't forget to get your camera I want you to get pictures. I said, ok I will.

But, on the good note she is hanging in there and I miss her saying Mom, mom, mom lol. I am missing her saying, Mom Nellie keep messing with me lol. Mom I wont that I wont that lol.

But, her school princple called saying that she wish Nesa the best and that she will come and see Nesa when she get out the ICU and also other good news she put Nesa down in this wishing like well thing where ever princple thoughout Milwaukee can nomtie a child for to get whatever that child wants as a wish like a make a wish foundation.

So I told her all the things Nesa likes and it would be nice if Nesa did get to have her wishes come true.

Nesa wanted a lot of toys girly stuff I knew that. Also a WII game, she want her own bed lol cause she tried of sharing a bed with Nellie lol and she want to go back to Disney World. I knew all of this so I just told her princple.

So we wait and see if Nesa's wishes can come true. It would be nice as a Christmas wish for her.

So aint no telling how long we will be here it goes by how long Nesa body is able to start working on its own and she starts doing things on her own. So she won't be able to do much until the vent is taken out.

But, I am here talking to her every step of the way. Telling her what is what even though she falls back to sleep she still hears me.

She made me laugh today. I asked her "Nesa is you tired of me calling your name?"

She shook her head yeah. And then a smile came across her face then she shook her head No.

LOL I had to laugh.

She even making me laugh while she is the one going to the worst thing ever that a 7 year old can go though.

Ok enough of my typing I think I have wrote a book lol.

I will update with plenty of pictures. Before and after pictures. Also they took the bandages off her belly it's looking good but, the saples will be in another week. So I will try to let everyone know step by step how things are going.

I tend to wonder around the building or stand by her bed but, when I stand there tears starts to roll down my eyes so I try to stay busy here at much as possible thats whey I am updating my blog. Journal writing does helps a lot I have to do this more often (AGAIN)

My friends and family is here as well to support me as well. Since I know so much about Nesa condition sometimes telling friends and family over and over it tends to get me to brake down again and again. So I sum it up and tell them the main details to whats going on.

But, on that note let me get back to her room be glad typing this only took me about 10 minutes glad I am a fast typer lol.

Everyone take care. Wish Nesa luck.
Thanks for all the prayers everyone sending.
Posting pictures soon.

Or for those that want me to send them pictures because, I email pictures from my phone to my email then I can fwd to whoever wants to see them thats the only way you can email me at ejones11681@aol.com that's the only way I can do it for now.

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Andrea Moberly said...

Wow! Answered prayers! I'll keep praying, you keep knowing that God will care for your girl :)

Monique said...

God is good!

Faye Lewis said...

Praise God from whom all blessing flow!!!

Remnant said...

Just WOW! Praising the Lord for a new liver for your baby. I'll be praying for her lungs and continued recovery.

You take care of yourself. You need to be strong so get some rest when she rests, k?

Crafty Christina said...

Oh Praise God for answering your prayers! This is amazing news. I'll continue to pray for all of you.

deltapurl said...

*hugs* Please let me know if there is anything I can do for you and your family. I will pray for her speedy recovery

Anonymous said...

Praise God for Nesa's new liver. He is so good. I will pray for Nesa's continued healing and improvement for her lung condition. Just wait on the Lord; He is true to His word. Patricia Richardson.

Ivalyn "Tee" Jones-Actie said...

What a wonderful Thanksgiving gift! God is good all the time and greatly to be PRAISED! I will continue to lift you and your family up in prayer.

Caroline said...

Thanks so much for the update, I will keep you, Nesa, and Nellie in my prayers. Here's to speedy healing!!! Hugs to all of you!!!

Crochet Goddess said...

I am so happy to hear that your daughter's surgery went well and she has a new liver. I am praying that she will continue to do well and fully recover. I hope you and your family will continue to do well.

Sheila said...

It is such a pleasure to hear that Nesa received a liver transplant and wishing her a speedy recovery.

gold said...

God is good is God is good!!!

croshique said...

I haven't checked in in awhile. I'm praying hard that Nesa recovers quickly. You hang in there!

RecycleCindy said...

Praise God for the new liver. I'm praying for Nesa and her health now and will add her to my prayer chain again over at Sandi's blog. God bless and big (((hugs))) to you. You hang in there girl, God is standing right there holding you and Nesa. Take care,

Tanya said...

Your strength is amazing, I don't know if I would have any tears left, I know you feel the same. God is good and he is with you throughout this ordeal. You and your family are always in my prayers.

Laura said...

What a wonderful blessing, just in time for Thanksgiving and Christmas! You and Nesa are strong girls, dealing so well with so much. I will pray that Nesa heals quickly from her surgery.

Ai Boon said...

Dear Lesa,
I followed your prayer request at Sandi's blog over to your blog.


Father God,

Thank You for Your divine arrangement for the new liver for Nesa. Only You could have done it and only You can make it work perfectly for her. We pray that You will allow her body to accept the new organ without any complications in the name of Jesus. We pray that You will give her courage to endure the pain and the discomfort. Please give her the faith to believe that You have healed her and she will be up and about very soon. Father God, grant to Lesa and her family the comfort and the faith that as You have arranged for the new liver, You will also make it work. Give them the energy and resources to cope with this stage in Nesa's life. Your Name be magnified and glorified in this situation. Thank You dear Lord.
In Jesus' name, Amen.

May God bless and keep you safe in His arms. May His peace and joy be with you always.
Best regards,
Ai Boon

momwhohugs1 said...

Hi Lesa,
Your blog is absolutely wondrous!! You are sooooo sooooo very talented. --a true artist!

I want to send you my love and prayers for you, Nesa and your family!