This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Friday, January 11, 2013

Never a dull moment

I posted the other day that we were playing the waiting game with Lydon and this "new" GI pain.  Well it wasn't a very long game, although I guess that is very relative based on who you are asking! We started the new medication, which is suppose to help with GI pain, Wednesday night. Thursday morning, Lydon woke up pretty early complaining with his stomach. When I went in to check on him, I noticed that his extension tubing was full of thick sludgy bile and the valve had popped open and there was bile all over the bed.  I know that the end of the tubing lies right into the jejunum which is very close to the common bile duct.  So although it is possible to get bile back up from a j tube, I was concerned with the amount and how thick it was. Later Thursday afternoon the GI nurse called me to check on Lydon and see how he did with the new medication.  I told her about the mornings events and she insisted on calling the doc.  She called back and instructed us to go to the ER to have an ultrasound done on Lydon's abdomen to rule out a couple of possible serious causes of his pain and bile back up. So as much as we hated to do so, we packed up and headed down to the ER.  After the ER doc examined him, she was concerned that with the combination of the bile back up and his pain after eating we could be dealing with a gallbladder issue.  So we got a stat ultrasound before they even drew Lydons blood. Several hours later, we got the results.  Lydon's ultrasound looked good.  No gallbladder issue, no liver problem and no pancreatitis!  The xray did show that the J portion of his GJ has slightly slipped up away from the jejunum but for the moment, it is still acceptably in  place.  The docs thoughts are that Lydon is having some intestinal inflammation and may have an ulcer from acid reflux. Although I am very relieved that Lydons pancreas and gallbladder are functioning well and not diseased in any way, I hate thinking that his stomach is hurting and that there really isn't anything that we can do to help him. I am scared to think about what is happening with his dysmotility and where that will end up. I feel like I am living in a constant state of anxiousness or panic...maybe it is just the fear of the unknown but either way, it just plain sucks! For Lydon, dealing with the intermittent pain and for us to not know what to do or how to help him. On a good note, we now know that this isn't an urgent matter that needs any type of surgical intervention and we are working closely with our GI team and feel like they are being very proactive in trying to help us help our boy.  So, for today, we are just happy to be home (albeit exhausted) and not inpatient dealing with a surgical/anesthesia issue which is always so complicated for us! Thank you to all of you who prayed, texted, emailed, and tweeted your expressions of love and support last night. In our weakest scariest moments, that is what strengthens us!  Much love.....


  1. So happy it wasn't anything serious.Happy to meet you too.The boys and I have the duplication and not the deletion.I am so happy that you found our blog.That was my intent when I started Brocs Blog was to help as many parents and families as we could and help educate them too.Although I think all SNs moms know more than our kids Drs do.