Finally... results from procedures on 3/28... another LONG post!

Gracie had a Colonoscopy, EGD and Bronchosopy on 3/28.
That same day we received preliminary results - - the doctors' observations - - and then had to wait for all of the lab results to obtain answers. As some of you know, due to the preliminary findings that day, we chose not to update the blog until we had definitive answers... we were worried, scared and given all the symptoms she's been having for such a long time, we felt that putting partial info on our blog would only tend to worry others and/or encourage a Google search that would then incite more worry. We just needed to wait it out privately.
Her GI doc found a very irritated stomach and bowel - - which we've known about for a long while now. Gracie has active gastritis (inflammation of the gastric mucosa of the stomach) and small bowel lymphoid hyperplasia (swollen lymph nodes throughout her entire small bowel). In fact, what appeared in a previous study to be a large polyp was, in fact, a very inflamed lymph node. Several biopsies were done and we are happy to report that the tissues biopsied do NOT have any abnormal cells - - no intestinal lymphoma. This is WONDERFUL news. Although we knew in our hearts that this wasn't her diagnosis, it was hard to ignore the similarity in the symptoms and we only grew more nervous as time went on and we waited.
We still have no real answers as to the cause, but are clearly thrilled to have ruled out the one thing that loomed in our minds. We will be changing her feedings to an amino acid based formula that we must create from a pure amino acid base... I will learn more on Monday. She is already on the purest amino-acid based powder formula on the market, but it has corn product, which may be the culprit if she's allergic. However, all of the formulas she's been on in her life have had a corn derivative... so we'll see.
Other findings from that day:

• Her upper airway is a mess (we knew this)... damaged from reflux and it appears structural damage from the repeated intubations several years ago (prior to the trach) and her own structural anomalies from birth. We have already been referred to a new ENT at Stanford who is more experienced in difficult airway issues and will pursue that once the GI issues are more stable.
• Her lungs look GREAT! Despite the horrible reflux that she has and the inability to coordinate a functional swallow, Gracie is not aspirating at all! There were absolutely NO lipid (fat) cells found in her lungs. This is fantastic news!
• Her stomach is raw inside... with linear ulcers... active gastritis.
• We are waiting on more info from additional labs that her GI doc sent out... Gracie has always shown low albumin levels (even at points of near dehydration). Gracie's nutrition is constantly in a compromised state... so we don't know if her albumin levels are low because of that or an inability to properly absorb protein. http://www.labtestsonline.org/understanding/analytes/albumin/test.html
• We are also waiting for results of a pancreatic elastase test (determines the function of enzymes in the pancreas)

So... we wait for more info and in the meantime will make small changes one by one to rule things out. I stressed to her doc tonight that this is affecting every part of Gracie's life - - she knows that and is determined to help Gracie. Compromised nutrition affects her development and strength both physically and mentally; her discomfort affects her physically and emotionally. When she's uncomfortable, her secretions increase which increases her need to be suctioned and when she can't manage her secretions herself, she becomes distressed. It's a vicious cycle. And, the last place she wants to be when she's not feeling well is at school... which is where she needs to be to grow and learn and have little friends like kids should. I am truly all consumed with finding a resolution for her. It's literally on my mind every moment... constantly trying to troubleshoot, theorize, diagnose and cure.