Aspyn's Story...

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The morning of July 13th her levels were fantastic. They were talking about sending us home in a few days with just the NG tube. They wanted to make sure she continued to get nutrition and eventually wanted to get her off the NG tube and at that point they would consider the G tube. Everything sounded so good then, but Aspyn was so sad that day, which was not like her at all. We told the doctors that she just wasn't acting like herself, nothing made her happy, she wanted to be held constantly, every time she would fall asleep she would wake up crying, even when we took her outside to see the fountains, she cried. And I mentioned it before but just to reinforce it, Aspyn never cried, only when they would draw blood would she get upset. This had us very worried. We asked the doctors why she was like this, and they told us they thought it was just the chemicals working their way out of her system. Sounded logical to us, so we just kept trying to make her happy. After a couple hours I noticed her right leg was swelling, so I asked the nurse to get the doctor. I then tried feeding her and after about a minute of eating, Aspyn threw up. I sat her up and noticed that her breathing had gotten really hard and she was breathing from her stomach.

We called the doctors in right away, and they ordered blood work, and a chest x-ray and immediately got her hooked up to check her vitals. Her oxygen was at a 100% and everything looked like it was ok except her breathing. Then they called respiratory to draw blood (she was a very hard stick so they always had to draw from an artery rather than her vein). I laid Aspyn down and when they poked her she didn't even flinch, she didn't cry, she didn't move, so at that point I lost it and left the room. My Wayne stayed with her and when he brought her back to the room he handed her to me and went into the bathroom very choked up. When he came out I asked him what happened, and he said she didn't even have the strength to reach her hand out, she started to lift her arm and than her it just dropped. We didn't know what to do at this point and all we could do was stand by and pray. The chest x-ray came back and they said her heart had almost tripled in size and the right side overflowed into the left. They were ordering more tests, and they said I could hold her until they got things in order. As soon as I picked her up she gasped for air, I just screamed for the doctor to come back, and at that point they took her from me and said we had to get her to the PICU. They called a Code on her. After what seemed like miles of halls, corridors, doors, our procession had finally arrived at the PICU. We were told to wait outside, and wait we did. Seconds were hours long, and minutes were an eternity. The head doctor of the PICU, finally came out and told us that after fifteen minutes of resuscitation, they did finally revive her, but if she was to make it through the night, she would be very heroic. They told us as soon as they got her cleaned up and placed the permanent IVís, we could go be with her.

Before they took us in to see her they told us that they had no idea what happened, they thought maybe she had a stroke, or that her body just started shutting down, at that point they thought it could have even been a virus that took her down so fast. The nurse told us she had never seen so many specialists in one room ever, she said that just doesn't happen, we had two cardiologists, two geneticists, three respiratory doctors, and all of the PICU. They told us if anyone would have a chance, it would be Aspyn. We finally got to go see her, she was unconscious, and she had tubes everywhere. They had IVs in her groin going directly to and from her heart, and also tried one in her chest but could not get it to hold. She had a ventilator and they had started a blood transfusion. That night we stayed by her side and just waited. The next morning, she woke up, looked around, held our fingers, when we spoke she would turn her head, we knew at that point that she didn't have a stroke, she was too alert. We were so happy, at that point I was convinced that Aspyn was going to be just fine. Aspyn was such a little fighter, she was breathing over the ventilator, but all of her hard work was causing her lactic acid levels to get to high, so they sedated her again, and decided they had to give her a paralyzing medicine to keep her from breathing on her own. We got to see her big blue eyes one more time before they gave her the medicine, only we didnít realize that would be the last time we would ever get to see her beautiful eyes.

They gave her a large dose of lasix hoping to get rid of all of the water she had been retaining. We watched, hoping to see her go potty (through the catheter tube), after a couple of hours she did finally urinate. They gave her another dose of lasix waiting for more urine. Five hours, six hours, seven hours passed, still nothing, her blood pressure was being controlled by so many medications that they didn't even have enough ports to give them all. The epinephrine was the only thing that was keeping her blood pressure up, and her blood pressure still wasn't as high as it should have been. That night came and went (her 8th month birthday). Wayne did not ever leave her side, he was so afraid that she might wake up and think she was alone, and he was not going to let that happen.

Early the next morning, July 15, 2002 around 3 am Aspyn still had not urinated, and was retaining so much fluid. They told us that her kidneys had failed and that the only way to resolve this would be dialysis and with her weakened state, she was in no condition for such a treatment. I have never in my life felt as helpless as I did at that moment, there was absolutely nothing we could do or say to make Aspyn better. We had no other choice, but to let her go. We told Aspyn again how much we loved her, and told her that we would see her again soon. Wayne kept telling her "daddy loves you", and I whispered to her one final time the words of Twinkle, twinkle little star. They unhooked her and we both held our little angel for the last time.

There isn't a minute of the day that goes by that we don't think of Aspyn, we miss her so much. We find our lives are so quiet, and so empty. We just don't know what to do. We still don't know what happened to Aspyn or what type of Mitochondrial condition she actually had. Doctors have told us that we may never know.

Update August 6, 2010

We still miss Aspyn more than words can ever say, and even 8 years later it is just as hard as it was the day we lost her.  We still do not have a specific diagnoses and really don't know how or why she got so sick on July 13th.  We were so blessed to have her in our lives even if it was only 8 months.  She continues to touch the hearts of strangers and she has forever changed the lives of many!

On November 24, 2003 we were blessed with another beautiful little girl, Aspyn's baby sister Gentry Hope.  We understand her chances of having the same condition as Aspyn is at least 25% or greater if the condition is maternal.  She is almost 7 years old and thankfully shows no signs of Mitochondrial disease.  We are so thankful and so happy to have her in our life, she makes each day amazing!  Please visit the latest word page to see pictures of Gentry.

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