I posted on FB earlier this week that I would post an update as soon as I got a spare moment and the moment has come! ;) After ouir ER visit, Lydon continued to complain of with his stomach and his "butt-ton". He didnt want us to connect or disconnect an extension and would even whimper and hold his tummy in his sleep. So, on Tuesday our GI NP that knows us pretty well at this point saw us in clinic. We explained everything that we have been seeing with Lydon lately. His continued complaints of pain with his button, decreased appetite and complaining after he eats, bile backing up and out of his tubing, bloating and distention, and his fatigue and lack of energy. Our nurse ended up holding him and hand feeding him Tuesday morning he was still so tired even after a full nights rest. So after talking literally for more than two hours we decided to start with the easiest possible solution. "Easy" of course being a variable word. The GI NP felt that we may have just gotten a bad tube and that with all of his complaining it warrented changing it to see if that would help him any. Next, we may try one dymotility medication. We have at one time or another tried them all to no avial. Our manometry test proved this as well but this medication is used "off label" for its motility side effect. We have just recently tried this medication and did not see any positive side effects but it may be worth trying one more time. If neither of those two things help then we may have to do an endoscopy to see if he has an ulcer somewhere that is bothering him. As far as the lack of energy and fatigue, her thoughts were that this is just a typical mito symptom. Lydon just recently had a growth spurt and gained more than 1lb and more than 1inch!! She (GI NP) feels like maybe, Ly's body has tried to compensate for this growth spurt and just hasnt really had the energy for anything else above and beyond that.
So, yesterday, we headed back down to the med center. Thankfully TCH can change our GJ tube in the IR department without the use of anesthesia which is always a very serious major issue for us. Lydon always gets nervous and is such a little heart breaker. But, Mommy knows that in five minutes we are back in each others arms and not in the PICU on a ventilator!! We will see what happens from here but so far he has been in a great mood today and not complained at all.
After we went to IR, we were seen by neurology. Our neuro thought that Lydon looked great! He commented on the tightness in his calves and ankle weakness but he feel likes he is doing very well and just asked us to put Lydon in hi top tennis shoes when he is active. We also learned that our whole exome test results are back but so far, we havent heard back from genetics. Maybe next week!
Until next time.....