It's been an awful day. It could be worse but it's been stressful. It's not worth going into all the details but trust me. Jude was transported today to the hospital to have his feeding tube replaced. Since he was vomiting this was our first step to try to find a solution to the problem. I was not able to attend the visit so Mike and Nurse Alan took Jude. Transportation did not go smoothly like it normally does but Jude got there okay. I then talked to the doctor later in the day and he explained to me that Jude had an small bowel intussuception caused by the GJ tube. Now bear in mind I am not a doctor but my understanding is this is where part of the intestine is pulled (the tube) or collapses into another part of the intestine. The doctor said this is a rare but known complication of the GJ tube. Jude always hits those rare marks. Anyway, the sad part about it is the situation is very painful and to me it explains why Jude was so upset last week but doesn't explain him being so happy this week. However it does explain all the vomiting.
The doctor said he hopes that the procedure he did today will control the problem but if it doesn't we have to come back for a sonogram. He then said they would either shorten the tube or go back to NG tube feedings. UM NO! I explained that I hope today's procedure it successful because I do NOT want an NG tube again. That was a nightmare. He replied, "Yes that's a good word for them." He then asked me to please call the GI at Cook's. He had been busy and wanted to make sure the GI was in the loop so I did so. Radiology also completed a chest X Ray on Jude today but I highly doubt it will show anything other than white chronic lung disease. I believe we just look for symptoms now versus reading an X Ray but I could be wrong.
So now the interesting part. While dealing with work, home, Jude, and more I was also dealing with the health insurance. I had received an explanation of benefits and after combing through the lengthy pages of summarized payments to various medial facilities I saw the nursing wasn't paid yet again. So I put a call into the health insurance company and I was told that Jude was once again denied insurance benefits. Let me explain. Mike's employers picked Aetna as their provider. Aetna uses another company to take care of all their billings, summaries, and benefit explanations. That company and the employer then use even ANOTHER carrier to decide medical necessity. We received a letter from the medical necessity company in January explaining that all private duty nursing from 1/1/2016 - 12/31/2016 had been denied for Jude due to no medical necessity. Per my prior blog I went through a lengthy appeal with this company and won. So on 2/22/2016 we received a letter stating the private duty nursing from 1/1/216 - 12/31/2016 had been approved. That's great...........however Jude capped out on Nursing in July 2015. So therefore this company subjected us to a stressful ridiculous appeal for no reason. They have ZERO explanation and even confirmed they called the health insurance on 6/9/2015 and 1/22/2016 to verify Jude had reached his lifetime cap. So to a normal consumer who is reading an explanation of benefits it looked like Jude capped for the year in 2015 and in 2016 they were challenging the nursing. Therefore we appealed and won. Nope, Jude's capped for a lifetime and all that stress and emotion was wasted for no reason. It's unacceptable and something needs to change.
Again we are lucky that Jude has a Medicaid backup but the health insurance processes are ridiculous.