It has been some time since we have had any updates to post. We are basically in a holding pattern. While Mason's cardiovascular recovery has been nothing less than spectacular, his progress on feeding and gaining weight has been at a snail's pace. He has continued to have episodes of emesis (vomiting) and therefore has not been making the weight gains the team would like to see. They are looking for an average weight gain of 30 grams per day-apparently an attainable goal, if you can keep your feeds down!
We were scheduled for the G-tube surgery for tomorrow. This was as a result of Ernie and I going back and forth on whether or not to allow him to go through another surgery. Dr. Goens, our Albuquerque cardiologist, spoke with Ernie on Saturday and explained that she felt he should have the surgery for a variety of reasons: our location/easier to manage g-tube, lessens the risk of aspiration and hopefully we can keep his feeds down. After further discussing with the team at Stanford we had finally come to the decision we would proceed with the surgery. This morning Dr. Bernstein, Chief of Pediatric Cardiology at Lucille Packard, came in during rounds and suggested we should try a course of the drug, Reglan. This would hopefully allow little Mason to increase the motility in his bowels and perhaps reduce his reflux. The thought is that in addition to his G-tube, he may need a Nissen procedure as well. (The Nissen secures a portion of the stomach around the esophogus to tighten it and prevent reflux.) If the Reglan works then it loks like the G-tube may be all that we need. While the G-tube can be taken out when no longer needed, the Nissen is a permanent "fix". I am praying God gives our doctors the wisdom to do the best thing for our little boy. In addition to the Reglan he has started, he continues to take Zantac and Prilosec to try and control what appears to be reflux. His symptoms include vomiting and arching of the back- (elongates the esophogus). These are typical of reflux even though all his tests indicate he has none.
Our friend Robert Davis has finally left for Georgia. Robert has been a patient here on and off for his entire life. His Grandmother, Kathy, left with him today only to have to be in another hospital when she returns for her husband, who has to have heart surgery as well.
Our new friends, Eric & Kristi have been able to leave the hospital as well. Their daughter, Emma, was here again for reoccurance of Chylo. She was discontinued from her re-start of breast milk and put back on the Monogen. I tried the Monogen myself and found it to taste just like corn starch mixed with water, with maybe a little bit of extra yuck added. I am hoping that Mason will be able to have breast milk after his six week course of Monogen with no problems. Time, of course, will tell. Little Mason continues to root for the breast-a rather small disappointment for me. I wish I could feed him-I think most moms believe that their milk will only help their baby. I can't help but wonder if these docs are wrong-breast is the best, right?
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