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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Thursday, November 19, 2009

Still Waiting

Well I've got some great emails with people leaving prayers and hoping for the best for my daughter Nesa thanks everyone.

I've been trying to hand in there right along with Nesa. It has now been a little over a month and aint no telling when she will get a new liver. They have had offers but, those was turned down due to that there was problems with the donors. But, Nesa is still number one in the region and we is just waiting. I am trying my best to keep her from getting ill. She got her flu shot and her H1N1 shot so thats good. When we out in public I am making she to wipe things down before she touch them just incase.

But, other words. I am doing good. I started back crocheting a few things. Hat and scarf for Nellie because since I be so busy with attending to Nesa I try my best to make sure that Nellie isnt forgotten she gets a bit upset at that. Shes only 4 so trying to explain to her why Nesa is to tired to play why Nesa is always in the hospital. Why Nesa takinig so much medicines.

But, I am still in school trying my best to hand in there. I only go 4 days a week but, soon 2 times a week due that Nesa have appointments ever week. She has about 2 to 3 a day I try to schedule as many in one day so we wont have to travel back and forth for 2 or 3 days in a row. Hmmm good thinking huh lol.

They want to run some EKG scans on Nesa's heart due that her heart is now rating way to high and they concern about that. Also want to do some brain scans since Nesa is low oxygen even though she is on a oxygen machine 24 7 they want to make sure that the low oxygen isn't causing any damage to her brain.

Nesa is homeschooled now but, her teachers miss her they stop by to check on her ever now and then and Nesa is able to go to the school and visit whenever she wants. Sometime next week before Thanksgiving I want to take her to her school so she can go to the library she love books just like me.

Ok well I think that is it. I will post pictures of my crochet projects soon. I been crocheting and reading to keep my mind busy from worry.

Everyone take care and thanks for the prayers and best wishes thanks.

Oh by the way I have a new email address incase those that want to contact me though email Ejones11681@aol.com

Take care everyone.

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