Laryngomalacia, Tracheomalacia, Bronchomalacia: Declan A-Typical TB Story

I'm not sure if I wrote about them on here or not but just to recap after Declan's surgery he had some complications. First immediately after the surgery he was parallyzed on the left side near his mouth which made his smile droopy. They assured us this was only temporary and because the nerve was weak after surgery. They were right and after almost 5 months it seems to be completely gone. After two days in the hospital the intern working with us decided to remove the tube from his neck. This tube was draining the excess fluid that was building up in the spot that used to have his parotid gland. The removal of the tube was not what I wanted nor what had been discussed the day before by the main Doctor, but it was done and we were sent home from the hospital. As an effect his face swelled severely to the point that he could hardly see out of his left eye. We rushed him back to Arkansas Children's and the determination was to "watch and wait" to see if it went down. It did go down but in the process it made a fistula. A fistula is an abnormal space created in between two organs. In our case it was preventing his skin from fusing right at the seam where the skin was still a little "iffy" from stretching due to the granuloma. This space was collection saliva which is a common complication of the parotid gland removal surgery. His face would fill up like a pimple and you could press on it and it would squirt out saliva. I was told to drain this whenever I saw it filled up. The Dr. once again wanted to continue doing the "watch and wait" but decided to send us to the Infectous Disease clinic to see if he could do anything different with medications. I forgot to mention he had been on Biaxin since August. This went on for a few months until around mid-December, when I finally said I had researched fistulas and that it was a fistula that needed to be corrected with surgery or a feeding tube (to prevent the saliva from building up). At this point the ENT Dr and I had different perspectives on what Declan had. He felt Declan had A-Typical TB (but had nothing to back it up...all the test results came back negative) and I felt that Declan just had a benign tumor because they had nothing to prove it was A-Typical TB. The reason why the results were negative were because they never tested the samples with DNA analysis, this is something you MUST do in order to find out whether a person has A-Typical TB or not. The Infectious Disease Dr was somewhat smarter than our ENT Dr and got the right tests ordered and put him on another antibotic (Rifampin) in conjunction with Biaxin that he thought would help. After only a week of waiting we received word back from his clinic that Declan did indeed have A-Typical TB originally and that a granuloma had formed within his lymphnode near his parotid gland. His other lymphnodes were swollen as well and the Dr was concerned about them so he tested for cancer to be sure, but the test was negative, it is possible that A-Typical TB can spread throughout the body into other places, but they said it's "unlikely." After two months of this treatment of 2 antibotics at a time, his saliva slowed down long enough to close off the hole and fuse, it's not completely fixed but it is getting better. So we have hope. He will be on the double antibotics for 6-12 months to try to prevent the A-Typical TB from spreading throughout his body. A-Typical TB is not contagious and is usually contracted from the environment. Many of the mycobacteria that cause A-Typical TB are found in drinking water, but people with suppressed or low immune systems (Declan) are more susceptible to getting sick from contact with bacteria like this. Moral of the story...purify your kid's water source? I think so...