On Monday, December 2, 2013, Austin’s school day was shortened a little, he had a few loose stools, nothing unusual for Austin since given the opportunity, if nobody is looking, he’ll sometimes over eat. I thought his color was off, thought that maybe he got into too many Cheese Its or maybe there were Cheetos in the house I wasn’t aware of. As his mom I took the simple approach, let’s flush him out, lots of liquids and see what happens. Tuesday morning, December 3, he was clearly jaundiced, very yellow. I was able to get him into an early doctor appointment at Henry Ford Fairlane and that was where this journey began.
The doctor immediately confirmed his yellow appearance and gave us two choices:
1) We could go down to the lab and have them run blood and urine tests or
2) We could go straight to the ER (the Henry Ford Fairlane Medical Center has one clear advantage that it has an ER directly connected to it).
The doctor noted that with his coloring there was something seriously wrong if we went to the lab he knew the results would be abnormal and he would send us to the ER. With his coloring he felt there could be something going on with his gallbladder, pancreas, liver or spleen.
With that information in hand we went directly to the ER via wheelchair with my prayers already starting – I was hoping, praying, it was something simple, just let it be his gallbladder, let it be a simple blockage.
In the ER we began the tests, numerous blood draws and a urine sample. While assisting Austin with the urine sample I knew right away something was seriously wrong, the color was way too dark, the color was ALL wrong. While we sat in the ER that day that sample set on the back counter glaring at me, reminding me that this looks serious. I was mad at myself because I wondered how we got here, how long was this going on, why didn’t I see something sooner. Austin seldom complains partly because I don’t think he understands what is normal and what is not. If there is not something very evident going on his digestive system or if there isn’t a fever I often have no way to determine if he is or is not well.
Austin was diagnosed with Hemolytic Anemia – Warm Body. With my husband, Jerry, and the girls, Natalie and Genevieve, able to manage the home front, I was by Austin’s side almost 24/7 only going home to shower and change clothes once a day or at times depending on what was going on or weather I might venture home once every two days. Through this adventure I forgot about the opportunity to blog, I had an Austin Update group in which I frequently posted updates to keep family and friends informed. It is a little after the fact but I’m going to go back through my email and capture those updates here.
I wish I could say that I’ll be leaving a lot of “worry” behind in 2013, but the worry doesn’t fade, it’s always lurking especially now because the wounds (the uncertainty, the unknown) feel so fresh. I find today’s technology a blessing and a curse because like anyone with a diagnosis the first step we often take is to hop on the internet and take in as much information as we can. Because of Austin, because he has fragile X (diagnosed at almost five) and Autism (diagnosed at the age of 11), my approach might be a little different than a typical web surfer with my information seeking coming from the National Institute of Health and searching out published NIH research through PubMed Central (a tool at one time Rep. John Conyers wanted to take away “Research copyright bill would end free health info”.) No wiki info for me, no info not researched based or possibly peer reviewed and we’ll only look at dates to determine what has changed over the years, what have we learned, where has the science brought us. I wish the luck I seem to have with conditions that are considered rare would one day apply to the luck one would need to win a lottery, I could be a multi-millionaire by now. Frustrating to know that an expert may not be readily on hand, odd when you feel that the doctor who just stopped in during your follow-up visit only wanted to meet someone who had this rare condition and was beaming with a smile knowing how lucky we were to be able to sit across the room from him.
During the next week or so, I’m going to take a little time, filter through the numerous “Austin Updates” that were sent out through email and capture them through this blog. I want to celebrate how amazing Austin was through this ordeal, which may not be over, and how much we appreciated the prayers and support from others. This was an experience I would have loved not to have, to walk in others shoes who have sat by one’s bedside not knowing if we’d ever be home together again, hoping and fearing all at the same time what tomorrow may bring, and that still lingers because I’m not sure we’re out of the woods yet. I only hope that 2014 will only bring opportunities to celebrate and erase at least a little of the worry.
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| Austin, Dec 3, in the ER, with his amazing smile, he should have been feeling pretty rotten. |
