Did that just happen?

One cute, hungry kid waiting for his biopsy

So remember how Casen was diagnosed with a kidney disease called Nephrotic Syndrome in July? The disease was (and 85% of the time is) supposed to be a fairly simple relapsing remitting autoimmune disease that improves with long term steroids and is eventually outgrown. The main symptoms are high protein in the urine, swelling, and low protein in the blood. Unfortunately, Casen's case has turned out to be anything but simple. Since he didn’t respond to the typical steroid treatment, he had a renal biopsy done on Tuesday to determine the underlying cause of his Nephrotic Syndrome. This is where things got complicated.

The kidney biopsy was supposed to be a fairly routine, non-invasive procedure that only inflicts minimal pain and requires only one overnight stay at the hospital to monitor for post-procedural bleeding. His biopsy was scheduled for 1pm on Tuesday afternoon, but once we got there we discovered that due to a scheduling error, it had been pushed back until 1:45. Casen and I were both annoyed by this since he hadn't eaten anything since 8pm the previous night. He kept requesting mac and cheese and I was able to keep him subdued for a little while by promising to provide him with his coveted meal after we met with the doctor. Still, by the time it was finally his turn to go back he was irritated, hungry, and tired! We were both ready to get the procedure over with. The biopsy only took about 30 minutes and the doctor assured me that it went well and that he would be by in the morning to check on him. He gave orders to keep Casen lying flat on his back until the morning, and as long as everything looked good in the morning he would discharge Casen. At the time, neither the doctor or myself anticipated any complications, but just a few hours later he was being prepped for an emergency surgery!

Soon after the biopsy, Casen was complaining that his tummy hurt. I figured the anesthesia was the cause of his stomach pains and asked the nurse to give him some medication to ease his nausea. The nurses/doctors didn't really believe that his stomach was hurting though and just brushed off the issue, because what one year old really knows where his pain is coming from, right? Wrong. Despite his tummy hurting him, Casen still wanted to try and eat some mac and cheese, but with every bite he complained even more. He ate a small bowl and showed no interest in eating anything else. After consistently complaining about his stomach and begging to go home he finally crashed and fell asleep.

Fast forward two hours later. The nurse came in to do his vitals and woke up Casen during the process. I noticed he was starting to gag, but before I could help him sit up he vomited all over himself. We got him cleaned up and the doctors FINALLY decided that maybe his stomach was actually bothering him! They gave him some Zofran, but even with the anti-nausea medicine he woke up again to vomit. An hour later I also expressed my concerns over his breathing. His heart rate and blood pressure were getting increasingly high and he seemed to be working so hard just to breathe. At some point during all of this he developed a fever and all of the sudden he was getting a lot of attention from the doctors assigned to him.

After examining Casen, they originally thought he had one type of infection known to occur in children with nephrotic syndrome, but a CT scan was ordered before moving forward and the results didn't support the original assumption. Instead, the results showed an air pocket in his abdominal cavity which generally indicates a bowel perforation. A surgical team was quickly assembled and before we knew it we were meeting with the on-call pediatric surgeon to discuss an emergency surgery that would require Casen's intestines to be removed from his abdomen so that he could find the source of the leak. Enter freak out mode!! My poor Casen looked so miserable and you could just tell that something was seriously wrong with his little body. John gave him a blessing and we both cried as we loved on him until he was wheeled into surgery. Yesterday was officially the worst day of my life, and undoubtedly Casen's too.

I was a mess as we waited and was SO relieved to hear that he was in recovery. We learned that there had in fact been a hole in his bowel and that the surgeon was able to repair it without any further complications. As we talked to the surgeon, we also learned that the puncture had been caused by a needle. We had anticipated this news, but of course earlier nobody wanted to definitively say that his biopsy was the cause of this awful outcome. While John and I waited to go back to see Casen, the nephrologist who performed his biopsy came to visit us and had to admit that he was the cause of all of Casen's suffering. It no doubt, had to be one of the more awkward converstions that he's ever had with a patient's family. I know that there are risks to every procedue, and I know that honest mistakes happen but I can't help but be frustrated with the doctor. Our quick, painless biopsy was upgraded to an extremely serious condition in such a short amount of time that it's still hard to wrap my head around everything.

Right now Casen is working hard to fight off the infection that has overcome his body as a result of gastric acid being leaked into his abdomen. He had a consistently high fever last night and has been closely monitored ever since the surgery. The fever is slowly improving as the day progresses, but we are scheduled to meet with the infectious disease team this afternoon to see if any adjustments need to be made to his antibiotic regimen. As is, we have been told to anticipate a 10-14 day hospital stay. The antibiotics he needs to fight off this particular infection cannot be taken orally so they have to be administered through his IV at the hospital. They are also being extra cautious since his immune system is already suppressed from the steroids that he has been on for the past two months. To think that I had been concerned about how we were going to be able to follow the doctor's orders to keep Casen from running and jumping for a week following his biopsy...

Post-surgery, Casen was given an epidural to manage his pain and seems to be relatively comfortable. It has allowed him to get some much needed rest. He slept all day yesterday and most of today with brief moments of awareness. When he does wake up he almost always asks for water and it breaks my heart that I am unable to grant him such a simple request. He is not allowed any fluids/solids for a few days as his bowels take time to heal. Each time he asks for water I explain that he needs to wait until his tummy gets all better and he sweetly replies with a quiet, "yeah." I want to cry every time he looks at me seemingly to say, "what the heck just happened to me mom?"

Of course, all of the nurses are doting over him, and his lavender hospital gown looks ridiculously cute on him in combination with his ultra blonde hair. All we can do now is wait and pray for a quick and complete recovery for my little sunshine. We sincerely appreciate all of the offers to help and the prayers being offered on our family's behalf. A big thanks to my friend Jami who has been watching Bentley since Tuesday and is even taking him on their family vacation to Schlitterbahn this weekend. I have been SO blessed to have her as a friend since moving to College Station. Casen also wants to thank Meghan, my friend from dental school who recently moved to Austin. She came to the hospital yesterday and picked up all of Casen's favorite blankets that he had vomited on and returned them to us washed and clean yesterday afternoon so that he could snuggle with them as he recovers. You are so very loved Casen!