Alex and Maddy

Alex and Maddy

Wednesday, April 17, 2013

Finally done!

What a long day it has been! Let me back up though and start from yesterday....

Yesterday morning, Alex and I headed in to Fort Worth to Cook children's Hospital for an appointment with Dr. O, our GI. Dr. O direct admitted Alex following the appointment so we could complete some procedures and testing. Luckily, they had a room at the hospital ready for us as soon as our appointment was over, but it makes for a long day entertaining a healthy 8 year old boy in a hospital room. Alex was pretty good and we had anesthesia come by to discuss Alex's history and past problems with anesthesia. I was pleasantly suprised by how open and receptive the doctor was to listening to me and our past history and trying to come up with the best plan possible for Alex. His hope was that he himself would be assigned to Alex's case this morning, but he assured me that if not he would pass on all the info. Late yesterday afternoon I got a call from a 2nd anesthesiologist who was actually going to be doing Alex's case and he went over a bunch of info as well. He even went so far as to call our favorite anesthesiologist in Houston to discuss Bug with her. I was very happy with the overall time and care that was taken to assure that Alex was safe.

This morning we were scheduled for 9:30. They called up and said they were running a few minutes behind and would be up in a bit for him. They came to grab us about 10:15. When we got to pre-op, we spoke to a few people and then they let us know that there was a problem and it would be about an hour. Okay, no big deal....well 1 hour turned into 3 hours! They finally took Bug to the OR about 1:10. I was able to go with him and he did the best he has ever done from an anxiety standpoint. They gave him a steroid and something to control seizures and started the anesthesia. I left him shortly after. They were doing several things while under. They did an upper endoscopy (which looked good except for irritation by his Gtube which he has been complaining about), a pyloric dilation with botox (to open the opening between his stomach and intestines) and they placed probes throughout his GI tract for an advanced test that will be performed tomorrow. Dr. O came out to talk to me shortly before 3. Alex did well. His pylorus was once again very tightly closed (this is the third time we have done surgery on it) Dr. O is hoping that the dilation with the botox will work better this time.  At this point Alex is still sleeping and is doing well despite running a temperature. We are watching him closely, but overall things went as well as could be hoped for.

Tomorrow they will hook up the probes to a computer and see how his GI system is working both with and without feeds running. We will also try 2 medications to see if either one improves his GI motility. Our hope is that this test will give some good information that will help us with Alex's GI system and especially the bloating that is causing so many respiratory issues at this point.

I will try and update at some point tomorrow.



  1. Praying all goes well and the testing yields good information! Hugs!

  2. praying you get good information