Nick was in excrutiating pain on Sunday, the 23rd(his actual birthday)!  We went through his whole list of rescue meds that day!  On Monday, his home health nurse came and she was doing all she could to help him.  She called the hospital and talked to the Transplant Team doctors several times.  Once again, they told us to bring him back.   We didnt have to worry about going through the ED this time.  WE went to the lobby and they let us go on up to 8th floor.  We went a couple days still hurting and trying to figure out what was going on.  They wanted to say he was still constipated, but I begged to differ.  He acted like his stomach was cramping.  We would put heat on it, rub, anything we thought might would help.  

After we got admitted, they did an ultrasound on his gallbladder.  We were told sometime last year when we were here for his transplant that he did have gallstones.  The ultrasound came back normal.  Later that night, they took him down for an abdomen CT scan.  We were hoping for some answers.  We did learn that he has malrotation of the bowel.  This is also something congenital that he was born with that we had no idea about.    He had hurt since 10:30 am.  It was tearing this Mama up.  

Then they considered kidney stones.  The next day, they did an upper GI to check everything out.   The upper GI looked great.  They had been doing blood work all along, but it showed up that he had the BK virus.  He had this last summer after he had already received his new heart.  He was very sick and he had blood in his urine and it was very painful.  The BK virus is a polyomavirus that can reactivate in heart transplant patients due to immunosuppression. 
we finally figured out that the excrutiating pain he was having was bladder spasms from the virus!  He is now on a medicine for that too.  They had given him a medicine called, Buprenorphine when he had it before.  It basically knocks him out for 4 to 6 hours.  The first time he had the BK virus, his numbers from his labs were in the millions.  Thankfully, this time they were only like 2800.  They gave him the Buprenorphine the 1st day.  The second day, he got to wait 5 hours longer before having to get it.  Today, he has been very irritable and we started down the rescue med list again because we knew it wasn't pain.  He only had to get Tylenol and one dose of Atarax the whole day.  NO BUPRENORPHINE TODAY!  YAY!!  He seems way more peaceful now.  They had stopped his feeds for a few days due to having tests done and not knowing if he was going to need some type of surgery.  They started them back Friday at half speed.  They kept the feeds at half speed for 48 hrs.  Today they went up to 65 ml/hr and he's done great!  They will go up again tomorrow and hopefully soon after that we will get to go home.  They are still checking his labs as well.  He did smile for his Mama last night.  I wish I could take his pain away.  He has had to endure so much pain in his 16 years of life than most people do in a lifetime.  Thank you for all of the many prayers and please keep them coming!