Sunday, October 10, 2010

Mom to Adyson Lea Cheramie
September 19th, 2009 - January 22nd, 2010

September 19, 2009 our sweet angel Adyson was born. She was one month early.  Right away we were told that her liver and spleen were enlarged and she was sent to USA Women & Children's in Mobile, AL. While there we found out that Adyson had a very rare liver disease called Neonatal Hemochromatosis-- NH. With this condition babies do not make it out of the womb, and the ones that do typically do not make it within the first 2 weeks of life. 

The website below explains more on that. Thanks to great technology of the internet, we found Dr. Peter Whitington-we will refer to him as PW-- who is the only doctor in the country who specializes in her condition. Here is more info on NH and PW.

Before I go on let me say this: Your liver produces coagulation factors that help clotting when one bleeds from a cut, injury, etc. Well since Adyson's liver did not function properly, her clotting factors were very low, which means she could bleed out even at the slightest cut.

Monday, October 26 Adyson was air lifted to Children's Memorial in Chicago, IL under the care PW. We were thinking she needed a liver transplant. Before she left, she was having blood suctioned out of her lungs. She was not expected to make it through the flight.

We get her up there and PW says she needs surgery on her heart to close the PDA (ductus that suppose to close at birth). He said this was causing more problems than her liver.  The surgeons would not agree to it because of her coagulation factors.  They said that she would bleed out and not make it through surgery. PW told them that she will not make it if we didn't do it. So they don't do it and she doesn't make it OR they do it and have a 50/50 chance.  PW got his way, of course :)  A few days before her surgery they pumped her with platelets, fresh frozen plasma (FFP) etc to get her clotting factors up to help the chances of her not bleeding out.

November 13, 2009 was the first (yes I said FIRST) heart surgery to close the PDA.  The second surgery was November 14, 2009.  To explain the TWO heart surgeries:  she was jaundice from her liver not functioning properly. The first surgery (which was done at bedside), an artery was closed and not the PDA. The second surgery was an success. The surgeon who did the first surgery was off when the second surgery took place and he drove one and a half hours back to be there.  He told us that he struggled to find the PDA because it all looked the same due to the jaundice.

Within 48 hours Ady was already improving significantly. She was extubated (taken off life support) Thanksgiving Day, and was moving right along to getting better without a liver transplant :)  We were there for about 6 weeks and PW said we could move her back to USA because she was doing so good.

Tuesday, December 8, 2009, we were back at USA. She was doing wonderful, eating good, taken off oxygen completely; we took a CPR class and were learning how to use the machines she would come home on.  That's when it took another turn for the worst. She got the flu, staph, blood clot in her liver, just to name a few things. I email PW and he refers us to Dr. Rene Romero in Atlanta, GA. Here are a few websites on him.

I emailed him and told him Adyson's story.  He has worked with PW and NH babies before and if you read the articles above then you know how good he is.  We went to be put on the liver transplant list.  
January 13, 2010 we went by ambulance to be under Dr. Rene Romero’s care. I was so excited because I knew how good this doctor was and I could stay in the room with her.
January 14, she was incubated again (put on life support) and her kidneys were not functioning properly.   She couldn’t be put on the transplant list until her kidney’s worked properly and her breathing better.
Ady's heart stopped at 3:30 a.m January 15. Her blood pressure was like 57/32; something like that. They called code blue over the hospital intercom and everyone was in her room stat. It took the nurses and doctor's a few minutes to resuscitate her. Her kidneys were failing along with her liver not functioning. She was getting LOTS of blood products, platelets, plasma etc. She was put on paralyze medicine so she couldn’t move and was sedated.  She was also put on an oscillating machine, which is the strongest life support machine there is.
I used to work in a hospital and when I heard the cold blue, my heart just dropped and I always said a prayer. When I heard it and it was my daughter that needed the help, I just froze and prayed fervently for not only Ady, but the doctors and nurses that were taking turns giving her CPR. *tears*
Her liver, kidneys, heart and lungs were all failing. She was receiving continuous blood products.  And her oxygen level was not good. The doctor thought she had bleeding internally but couldn’t do ultrasound until she was more stable. If you messed with her then her stats would go way down. She didn’t like to be messed with.  Doctors checked for possible infection which could caused everything to fail. She had her 3rd paracentesis (remove fluid from abdomen) done and ran tests on that fluid also to see if there was infection there.
January 16, she had a permanent drain put into her abdomen to remove fluid every hour. There was even discussion about doing dialysis.
January 18 we were told that her chances were slim and we could be facing a very tough decision in the next few days. The next few days we talked to the kidney and liver doctor’s and were told that there was no other treatment for her. She was terminally ill.
January 21, Dan and Konner came up and we were then discussing when to take her off life support. We decided we were going to spend the day with her Friday and take her off Saturday morning.
 Friday, January 22 came and we were told she was breathing better and we could wait and wean her off life support and eventually bring her home on hospice. The outcome would be the same whether we brought her home or stayed.  We also had Konner to think about. If we brought her home only for her to pass away there, that would bring a lot more question from him. When we went to Atlanta we told each other that this would be the last stop, so we decided to go ahead and take her off life support that day (Friday).  She passed away at 3:23 p.m.
Only a handful of people saw her, but she touched mine, Dan’s and many other lives.  We are so blessed to be her parents and to see how God worked through her and how He is still working through her, and she never said one word.
Every pregnancy from here on out, there is an 80% chance he or she will have NH also. Thanks to advances in research and treatment, we are looking forward to welcoming Adyson’s baby brother, Rivers, due on the one year anniversary of her passing, January 22, 2011.

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