Avery UPDATES

 

Most of Avery's updates and entries are written by her mother, Marissa.

Say what?! 2010-04-11 23:59:53.0

Avery’s heart rate drops when she sleeps.  She has been this way since she was an infant.  It use to scare me and the doctors taught us to blow on her face to wake her “out of it”.  When she came home from PICU, I didn’t feel like she was ready because I wasn’t ready for her to stop breathing on me.  She was sent home with a machine that had an alarm if she stopped breathing.  Well almost 5 years later, she still does it.  It’s not so bad anymore because she doesn’t stop breathing completely.  Well this concerned the night nurses and they requested she take an EKG test Sunday morning.  She was awake and it came out fine.

After the EKG test she threw up out of the blue.  Not sure what that was about. Her hemoglobin is low so now they want to do blood transfusion. The normal range for the hemoglobin is 12 and her current level is 6.8.  It can be due to her losing blood when she was passing the blood clots in her urine.  BUT her urine is clear now!!!  Before they do the blood transfusion, they are giving her a hormone drug via SHOT that will help her kidney produce red blood cells.  The nurse says it hurts (stings) so I’m not looking forward to Avery getting this but I know she needs it.

 

Today, her creatinine is 2.6 so that hasn't changed. Avery has been giving her surges of steroids for the past 2 days to slow down the rejection but it's not working yet. The doctor said it might take 3 treatments before we can see a difference.

She had lots of visitors today!  Grandparents, Aunt Karen, Uncle Noe, Tio Pito, cousins Jasmine, Violet, Isabelle and Rema.  Her most favorite was her big sister, Alexa!  She was so happy to see her.

Avery's hates being on bed rest.  She isn’t supposed to be running around, playing or moving around.  Late in the afternoon her cut started bleeding and leaking where she had the biopsy.  I think she was up too much when.  They called the doctor because her tummy was very hard and big.  The doctor ordered to have more blood drawn to check for blood loss and possible internal bleeding.  Internal bleeding???  All he wanted to do was draw blood to check for internal bleeding?!!  I expressed my concern and said there had to be another test to check for internal bleeding.  He ordered an xray.  Not sure how you can check for bleeding with an xray but at least test show no blood loss.


While we were waiting for the hemoglobin to test for blood loss, Avery had to get her shot of hormones.  She hated it and so did I.  I asked for the results of the blood work and guess what….. they lost the blood; the lab said they never got it so they had to do it again.  When test finally came back it didn’t show any blood loss.  Back to bed rest for Avery!

 

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Bad News... 2010-04-10 21:06:10.0

No good news. Avery has chronic rejection :(

She MAY have a few more months with this kidney.  We will find out on Monday.  They can't save her kidney because the cancer virus (EBV) is slowly coming back.  Found out today that the cells in her blood were detected yesterday.  The only way to save the kidney is to give her more immunosuppresive medicine. But we can't compromise her immune system more because we need it to attack the virus and cure the virus because we can't risk losing her life to cancer.

In summary, she will lose this kidney but we don't know when, when she does she will have to go back on dialysis and will be put on the transplant list for a new kidney. Keep praying with me for a miracle!!! 

Avery isn't happy.  She's on bedrest for 2-3 weeks.  She can sit up and watch tv on the couch or bed but no running, walking around, jumping, playing, etc. so she is bored.  They have no movies here.  All they had was a old Mary Kate & Ashley Olsen VHS from when they were 5 years old.  They are singing and dancing.... so annoying!  lol.

We will be in the hospital until Tuesday or Wednesday.

Biopsy is done 2010-04-09 20:55:31.0

They finally did the biopsy at 3pm.  We got here at 6 am and Avery was so restless and hungry but she couldn't eat before the procedure.  This was Avery's 17th surgery/procedure.  I feel so bad for her.

We never prepared for post transplant issues. We thought it would be happily ever after and thought Raul's kidney will last for 20+ years.  We won't know the results from the biopsy from tomorrow.  Of course we aren't wanting any type of rejection.  If it's acute rejection then we can save her kidney!

Avery is doing ok.  She's in and out from the medicine.  She's on bedrest for 6-8 hours.  She is urinating big chunks of blood clots so it's painful for her.  I feel so bad.  I almost passed out.  I didn't expect to see blood clots when she went to potty.  They got mad at us because we let her get up to potty.  We didn't know she had to go in a bed pan or pull up.  She was NOT having that.  She was in pain because she was holding it.  She didn't want to potty on herself.

I had to beg her to go.  Ok well I actually bribed her with everything possible.  She was just crying and crying.  I told her she can have candy, gum, polish, lip gloss, etc.  Nope, she didn't care.  Finally I sad I'd go down and buy her a brand new soft blanket from the gift shop since we forgot hers.  SOLD!  BINGO!  She got excited and said, "ok, will you hold my hand"  Awwww my angel!  Avery is now the proud owner of a soft pink blankie!  She loves it.

Waiting 2010-04-09 20:41:14.0

We didn't get to the room until after 8:30.  They didn't have her paperwork in admissions.  They have not done the biopsy yet but by her blood work from today her transplanted kidney is only functioning at 20%. The biopsy will determine if the kidney can be saved with medication or if it's past the point of no return. If she loses this kidney she will have to go back on dialysis and wait for another kidney transplant.

Still praying!

Hospital Bound 2010-04-08 20:28:21.0

Avery's doctor called me on my way home from work and said she needed to be admitted into the hospital Friday morning at 6 am.  Her creatinine level had risen to 2.6.  They need to do an emergency biopsy to test for rejection on her kidney transplant.

We hang up and I break down crying.  So many emotions are going through my head.  I just don't get it.  Why does she have to go through this all over again?  Why do I have to go through this?  Am I mentally capable of handling this?  Who's going to take Alexa to school?  Who's going to pick Alexa up from school?  What about my job, I have to work to provide for my family?  What about Avery's birthday party coming up in 2 weeks? 

Pray.  Pray.  Pray.  Pray.