We Love Amari

Update

It is with a heavy heart to say on July 5, 2019 at 4:19pm sweet Amari gained her angel wings. Unfortunately, her little heart was too tired and weak to work on its own any more. Sweet Amari in the little time you were here you left such a big impact in so many lives you will always be our little ninja who fought so hard till the very end sweet girl. Due to her untimely and unexpected passing  my cousin Salome and his wife Tabitha are looking for support to pay for funeral expenses. We thank everyone for their thoughts and prayers as we grieve over our loss. 




Amari’s story

Amari was born on December  12th 2018 with several  heart defects they are: Hypoplastic  Left Heart Syndrome, Mitral atresia, Aortic atresia, Tricuspid Regurgitation, and Retroacortic innominate vein. At only six days old, Amari had her first open heart surgery. The surgery that was performed was the Norwood with a Sano shunt. This surgery was necessary for Amari to survive. Her surgery took 9 hours but she wasn’t recovering well after coming off of the bypass machine, 8 hours later when she started to do a little better  they moved her up to the PCCU to recover. A hour after moving  up to the PCCU she started to desat and the surgeon feared she had a blood clot. He went back in to her chest and ended up finding a blood clot which he then removed. Due to the stress of her surgery her heart wasn’t funcitiobing at full capacity causing an increase level of acid to buld up. So the surgeon made the decision to place her on emergency ECMO. ECMO is a machine that does the job of the heart and lungs so the those organs can rest and recover. Later that morning the surgeon didn’t like the amount of pressure required by the ECMO machine to pump blood into her heart, it was higher than normal. So he went back in and found that the shunt had twisted itself and was pushing on an artery which was causing the machine to use more pressure, he was able to straighten the shunt and stitched it to her sternum to make it more stable and prevent it from twisting again. While on ECMO they were doing hourly brain ultrasounds and during one of the scans, on day three of ECMO, they found that Amari had a small bleed in her brain. Which is one of the risks of ECMO. They immidately took her off of ECMO and continued to do hourly brain ultrasounds to monitor the blood.

On December 26th her swelling had gone down enough that they were able to close her chest but the bleed in her brain had gotten bigger. Unfortunately they had to wait for her to be more stable and get her extubated before they could take her to get an MRI. The neurologists said that the bleed is critical but not an emergency, since her brain was still functioning as it should. 

On Jan 5th they took her to get a CT and the scan found that the bleed was from a stroke, which the surgeon thinks it happened during surgery. The stroke was on her right side of her brain and the left side of her body was affected and she wasn’t able to move that side of her body. They couldn’t see the extent of the damage that was done and are waiting on her being extubated to do a MRI. In the CT scan they found two blood clots, one in her brain and the other in her neck. So they had to start her on a blood thinner called Lovenox to see if it would help the clot dissolve. 

On January 11th Amari was extubated! Her breathing tube was finally out. But once she was breathing on her own they found that her right diaphragm wasn’t working, which they believed the nerve for it was nicked during surgery, so they hoped it would heal and regain its function. So she had to have a face mask on to help give her possitive pressure to help her breathe. Another concern they had once she was extubated was that she wasn’t making any sound although she was crying. They believe that the nerves were also damaged during surgery. ENT came and found that her left vocal cord was paralized.

On Feb 13th Amari went down for her MRI. Afterwards they found that her two blood clots were completely gone, so they were able to stop the Lovenox injections. Which was perfect timing because she started having bloody stools from it. Then after a day of normal stools she started having white stools. They did an x-ray and blood work and found that she had sludge build up in her gallbladder and her liver wasn’t functioning properly. They believe that the sludge build up was from her being on TPN, Total Parenteral Nutrition, for so long. She was started on Ursodiol, a cholesterol medication that hleps dissolve gallstones and treats primary biliary cirrhosis, a liver disorder. After two days on the medication her stools returned to a normal yellow/green color but she had to finish the four week dose of medication to help the sludge dissolve completely. They also found that she had significant brain damage. Roughly 50% of her brain tissue had damage done to it.  They had started multiple therapies to help her recover but since she is an infant the brain can recover better than an adult so it is hard to diagnose. At a year old she will have another MRI scan done to have a better idea of what to expect. 

Due to her stroke the left side of her face is too weak to be able to express milk well enough to grow, because of this they had to have a G-tube placed on March 1st , so she could get enough nutrients to grow. Twelve days later Amari had gained weight steadily enough that they were able to be discharged to go home. 

My cousin and his Wife are a military family and before Amari was born my cousin, Salome, was about to end his 5 year contract with the Army and get a truck driving job. Due to Amari’s complicated hospital stay they decided that the Army's health coverage was worth keeping, so Salome re-enlisted for 3 years with compassionate orders to San Antonio so we could stay close to her medical team. The process was started in January but unfortunately they kept running into road blocks trying to get his orders. It took Amari’s high ranking cardiologist calling to get Salome’s orders processed in April. Now they have a week to find a home in San Antonio to stay in until a house on the base becomes available. Trusting that God will lead them in this process and a house will become available soon.