We are beginning to think that we have a rain cloud following us around. Just think Murphy’s law x100. We had a weekend of “weird” stuff going on with Aiden.
He started looking puffy and fluid overloaded on Friday so we had to up his dialysis concentration to 2% Dextrose in order to try to pull more fluid off. About the same time that the fluid thing happened he developed a cough, which we thought was probably related to the fluid. Saturday night he began to scream like he was in pain and could not sit still. After looking him over I noticed that his testicles looked more swollen than usual and off-color. 10 minutes later they were almost purple and rock hard. I freaked and began making calls to dr.s and making steps to take him off dialysis to get him to the ER. While I was doing this, he fell asleep in Mimi’s arms and when I checked his diaper area again, everything was normal. I pushed on everything and he didn’t react at all. Then only thing off was a little puffy raised area near the top of the testicle. I thought maybe I was crazy at that point! Since he was obviously not in any pain and everything was back to normal we stayed home and he did fine through the night and woke up in a good mood.
During the early afternoon, Sunday, he spiked a temp of 102.1. With Aiden there are so many possibilites for infection with his central line, dialysis site, the cough, etc. that I was not comfortable just medicating him and letting it go. I called Dr. Chaikin (his pediatrician) and she agreed 100%. She talked to Dr. Quan and we all agreed that it made no sense to go to the local hospital when A. they would just want to send us to Dallas because of Aiden’s history and B. we were supposed to leave for Dallas Monday anyway. So Aiden, Mary Lou (thanks Lou!) and I made the trip to Dallas and checked in through the ER here and were admitted to the pediatric floor late last night.
So far his chest Xray and labs look good. From the way it looks so far the cough and temp may be something viral. We have sent blood cultures (peripheral and from his Central Line) and PD (peritoneal dialysis) fluid to make sure there is no infection there. Praying it’s just something simple that has to run it’s course.
When I told Dr. Quan what had happened with the testicles the day before he knew immediatley what was going on. Okay, so I’m not crazy after all. Apparently Aiden has developed a hernia on both sides of his groin. A loop of his bowel has slipped through on both sides. When he gets upset and tenses up it can squeeze the bowel at the opening where it has slipped through..causing the pain, hardness and discoloration, etc. When he relaxes the blood flow returns to normal, the pain is relieved etc….We also noted that he has developed a umbilical hernia.
So of course, this means more surgery. Dr. Quan is contacting the surgeon today to see when they can schedule Aiden–I will let y’all know as soon as I know. It will be a minor surgery. After the surgery we will have to cut down on the volume of dialysis fluid until things have time to heal up.
I don’t even know what to say at this point. I don’t understand why these things keep happening. We just want to deal with one thing, ya know? Please continue to pray for us–it is really hard to understand the why’s and hows at this point. We feel like we are emotionally and physically stretched to our limit already–but as always, we will do whatever it takes to keep our toot healthy and upbeat.
I will update as I know more.
Christy, David and Tootbug