Sorry i didnt get to update as soon as I wouldve liked. Its been a busy few days. Over the last several days, weve tried extremely hard to get Lydon GI system to accept the tube feeds but he has not cooperated. Basically whatever we put in his j tube is coming out his g tube. His output is often more than what goes in.
Lots of calls and arrangements were made and ultimately we were transferred to Texas Childrens hospital to have a special test done on his GI system called manometry. Today we will go down to Interventional Radiilogy and they try to place the probe thru his intestines. Tomorrow (Friday), they will perform the test which takes approx 8 hours with NO sedation. God help us! After the test, they will replace his feeding tube (it had to be removed so the probe could be placed) and we will be transferred back to Hermann for a couple more days. We are glad we are getting this done but we are so tired of being in patient. Being on TPN is not what we want but being home is and we are willing to make that happen regardless of what we have to do in order to achieve that. If that means going home on TPN, then so be it. We are really praying for some answers...the ambulance ride itself was traumatic enough to say nothing of the 14 days weve already been in patient. Please bind with us in prayer and belief that this testing will lend us the information we need to know how to best take care of and move forward with Lydons GI issues.