Ok I've been on a totally emotionally roader coaster for weeks now. Not to many of you known about my daughter Nesa and her condition a quick sums up on Nesa.
Nesa was born with a liver disease called Biliary Atresia to get more information you can click. But, Nesa had a surgery called a Kasai back when she was only a month old to correct her bile ducts. Ok that did great but, for many years she kept getting a infection due to her liver disease. She was hospitalize many many times I lost track a long time ago. But, her GI dr did endoscopy produce to help close up her veins that went down thou her month and down towards her stomach. This was done ever 2 to 3 months for the pass 3 years in a half this was to help open up her veins a little so that they want open to much or close to much closing can cause blood clots and opening way to much can cause her to bleed to death.
Now that was going soso but, then Nesa started coming down with this horrible cough this summer that just wouldn't go away then she started having trouble breathing. Then on top of that she was sleeping way to much and didn't want to go out and play or do anything that kids like to do. So I took her for her check up with her pedicitan and her dr said, that Nesa has low oxygen level and she thought it maybe asthma so she gave us inhalers and a machine for Nesa also told us to go to children hospital because she didn't like how low Nesa oxygen levels was. Also I told her about the sleeping that lead her doctor to think she maybe depressed and to see a physiogist. Ok so then Nesa was admitted to the hospital for the low oxygen that lead to them keeping her for 5 days to get her oxygen level back up it went back up and they said, it's asthma. Ok I thought we was done with that.
Nope we wasn't done with that about around the start of September Nesa had to go for her surgery with her GI doctor so we went. The nurse did Nesa's vitals and noticed Nesa oxygen level was way to low. She asked me was Nesa running before she came to seat down. I said, no why you ask. She said, because her oxygen level isn't normal her level is 79. I was like wow.
Now for those that don't know oxygen level is supposed to be in the late 90's up to 100 now Nesa was way to low.
Now after her GI doctor gets the news he decided to call off the surgery they didn't want to put her to sleep into they found out what it was that was causing her oxygen to be so low. I explain to him about we found out that she now have asthma could that be it he said, no that can't be it but, that doesn't means she don't have asthma and he want her to see a cardiologist.
Ok so we go and see a cardiologist but, in the mean time I am so worry and stress and hoping my baby is ok. Cause when I hear cardiologist I think of the heart. Now she set up to do a echo scan and do this bubble test to see how much bubbles go to her heart and leaves her heart and travel to her lungs.
They found out that only about 20% of the bubbles is traveling to her lungs and that isn't good when at least 90% to 100% supposed to make it to the lungs this is what is causing her to have low oxygen.
Now we wait to see what is next but, why we is waiting. I end up rushing Nesa to the hospital fast because she complaining she can't breath and that cough has gotten worster and worster to the point she was throwing up with her coughs. A high fever at 103.8. We get to the hosptial and her oxygen level way way to low and she's put on oxygen fast and for the next week and a half we in the hospital I get information after information about why this happened to Nesa.
Ok on top of the liver diease Nesa was dignosed with Pulmonary Arteriovenouse Malformation I was like what. So other words to sum that up. The veins that connects to Nesa heart that leaves to her lungs not pumping enough blood to make into oxygen to send to her lungs. Thats why she short out of breath or barely can walk up 8 steps and why she so tired a lot.
Now the liver transplant teams come into Nesa hospital room and introduce there self I knew this was coming but, I didn't want it to get to this point. They have to give her a new liver due to the low oxygen her liver just wont be able to take it and also this can help reverse her low oxygen problem. They said, some kids with Biliary Atresia this can happen to it's a low percent of kids that this can happen to so it happen that my daughter is one of the low percent. For days Nesa on the oxygen in the hospital and I am getting schooled on what will happen before, during and after the transplant. Then I am trying to explain the best way I can to Nesa about what is going on and what will happen. That's hard to do with a 7 year old. Nesa knowns she is different but, now trying to explain to her the reason why she gets tired just by taking 10 steps from her hospital bed to the bedroom.
As of October 9, 2009 Nesa was put on the liver transplant list. UNOS the transplant network.
We is finally home after all this time but, why we is home Nesa has to stay on oxygen until a new liver comes available 24-7 she is on oxygen so that means no school she will have to be home school the social workers at the hosptial is taking care of that. Also she has to be on her pulse opt machine thoughout the night and of course take all her meds and try to stay healthy until a new liver comes available.
The downfall to this is trying my best to explain to Nesa. Also waiting for 3-6 months or a liver to possible come availabe for her. Also our hospital here don't do living donors and family memebers and friends as welling to get tested to see if they can donoate to Nesa. Also waiting on someone else to die grrrr. Also Nesa complaining about her oxygen nasal cords. Also me trying to hang in there. Also afterwards she still in the danger zone with rejection or infection and don't want to think about the negative outcome pass that.
The good thing about this is my baby can get health again. Play again be a kid, kid again.
Also Nesa want to know the donors family and I like that she cares that much to want to know them.
Nesa and my conversation:
When I was explaining to her about her getting a new liver. She said, mom how they go live without a liver if I can't?
I said, well whoever liver you get will be gone up to heaven that person have to die first.
My Thoughts: How else do you supposed to tell a child that the person you getting a liver from will be dead.
She said, won't there's be dirty?
I said, well the doctors will clean it the best they can but, to keep the new liver working in you, you have to take care of yourself by taking all your meds and staying clean.
She said, I will.
Then one thing she said, that really caught me off guard but, I loved that she cared.
She said, Mom can I tell her mom thank you for the liver?
How I react and my thoughts: I just broke down crying. Telling you the truth I wasn't trying to be selfish but, I was so concern about my child I knew someone has to die in order for my child to get a liver but, I never thought of wanting to know the donors family until Nesa said, something.
I said, yeah we can see if we can get to know the person that gives you a liver family.
Well right now in this region Nesa is at the bottom of the list her doctors working on within a week or so getting her to be number 1 on the list in our region so I am keeping my fingers cross and prayer that she be listed as number 1.
So now you all see why I haven't been around much lately. Not to much of sewing or crocheting going on. To keep my mind busy I've been reading a lot either novels or reading up on transplants and all of that.
But, in the mean time I am trying to keep my head up and spend plenty of time with my girls. We try to go out to the movies and out the eat as much as possible. I try to keep Nesa walking limited as much as possible. She misses school but, Monday I am taking her to say goodbye to her teachers and classmates for now.
Oh also Nesa and I started a book it's like a count down to her new liver. Everyday she will write how she feels I am helping her to try to keep track of all her meds when she supposed to take them and stuff like that. She get to ask me questions as much as she wants. I thought this would be nice for her to keep track of how she feels and also for me to know what meds she is on for that day and doctors appts and so on.
So wanted to update you all and let everyone know why I've been missing in action yet again. So will be taking a brake from blogging I won't for good will catch everyone up on what is going on from time to time. Or if I am working on something will update you all on that. I am working on finishing up Nesa afghan I want her to take it with her to the hosptial for when she gets a new liver. Other words I am trying to hang in there lots on my mind but, I am hanging in there as much as possible. School for me starts October 19 my mom will help to watch Nesa while I am gone. Working with be no longer for me right now cause all my focus is on Nesa and her getting well and I want to be around her as much as possible. School is only for 4 hours a day Monday-Friday and my school willing to work with me when Nesa is in the hosptial for any reasons.
If anyone like to contact me at anytime you can do so. My email address is at the top of my blog. Questions or just want to talk that is cool. I try to check my emails a couple times a week depending on how I feel.
But, here go a few pictures of Nesa just took today so you can see she is doing ok just taking it easy until that time comes.
Thanks for stopping by and reading. Everyone take care.:) Have a great week.