Well as many of you know...but some may not, Lilly has had quite a summer. I am writing this now because things have slowed down a bit and I can put it down for documentation. So this all really started about a year ago but it wasn't until recently that things got interesting.
So, about a year ago Lilly would get your typical tummy ache. We thought nothing of it, kids get sick. Well as time went on, about 6 months in, we started to notice that things were maybe not as typical as we thought. Lilly was having terrible cramping pain with fever and would complain about her back hurting. It would usually last 3-4 days and of course start on Friday's or the weekend (NO Dr. appt's avail). The pain would hit her in cycles, it was just weird. We really started to notice the frequency increase to every couple weeks. The daycare was starting to report that Lilly regularly complained about her belly and refused to eat much. There were frequent calls about fevers and lethargy. We were at the point that as soon as Lilly got sick we went to the doctor. 3 visits in a row we were sent home with antibiotics for a "bladder infection", which had negative test results EVERY TIME. Then there was this odd week where she was getting fevers as high as 104* with no other symptoms. So this is where it gets interesting...
I had started calling them episodes because they were that frequent. We were off to the doctor yet again after getting a call from the daycare that Lilly had a fever and had been asleep most of the morning. During this visit I was demanding answers. I was beyond frustrated and was not leaving that office with another Rx for antibiotics. Thankfully the doctor could see I was not pleased and I think she only ordered blood work to appease me. I actually requested an ultrasound of her belly. I was starting to wonder if she had kidney stones or gallstones. We started with blood work and decided to wait for the results before anything else.
So the next day Lilly is still sick, ITS FRIDAY, and I get a call from the doctor. She tells me Lilly needs to get that ultrasound ASAP. Her blood work showed extremely elevated levels of inflammation. So we run to the radiology lab at St. Lukes and luckily they worked us in, I was not informed they were by appointment only. It didn't take long watching the radiologist to know he saw something, but of course they can't say anything. Here she is at that appointment.
We are sent home from here and the doctor said she is referring us to infectious disease the following week. She said if Lilly spikes another fever she needs to go straight to the ER. I load her in the car drive the 10min home and as I'm pulling her out of the car I can tell she is on fire again. Her temp was at 104* ! I quickly called the doctor, who said get her to St. Lukes. Off we all run...
Lilly is taken in for some testing then put on an ambulance for TX Children's. We still knew nothing about the test results. Here is that visit, you can see her good and bad cycles.
We ended up staying about a week at TX Children's. We met with a bunch of doctors and a surgeon. We were finally told that Lilly has a mass in her belly that is called a Choledocal Cyst. It is congenital and very rare. The cyst affects the bile duct from the liver, gall bladder, and pancreas. They were stumped because the cyst is typically asymptomatic and expected Lilly to have jaundiced, how they discover it in kids. Or worse, when she was an adult and it developed into cancer. So the surgeon believed that Lilly had something else going on. He said the cyst must come out regardless due to the high cancer risk, but he wanted to figure out what was causing her pain. He did not want to remove the cyst to have to do another surgery to fix something else. So we were sent home...to wait for another episode. Here she is...
About 3 weeks later I'm getting ready for work as Lilly walks into the room and starts whining about her tummy hurting. Honestly, my first thought was that she was whiney and didn't want to go to school. After about 5 seconds I could see that we were headed into another episode. This time I recorded her on my phone. I recorded her thrashing, hitting her stomach, SCREAMING...I wanted the doctors to see what this was doing to her. It got their attention and she was back at TX Children's. This time it was early enough into the episode that the tests gave us a better answer as to what was causing her pain. Lilly had pancreatitis! This was the result of the massive sludge filled cyst that was preventing the liver and pancreas from draining properly.
Lilly was scheduled for surgery a few days away so they could pump her with antibiotics first. This was the most difficult thing to watch. To look back Lilly made it through this like a champ, but she was in horrible pain. She had control of a morphine pump and refused to use it, she said it made her feel funny. We had to sneak the button from her so she could sleep better, or get up to potty. She would totally call us out on it when it started to hit her. I was very honest with Lilly about what was happening and as a result she totally blamed me for the surgery. She did not talk to me for almost 3 days. It was hard but she needed someone to be mad at. She was very lucky that the surgery was successful laproscopically. Here she is after surgery, these are a bit graphic..
We passed a lot of time playing I-spy. This is before surgery.
This is in the recovery room, still under anesthesia.
A look at her belly. They removed a large portion of her bile duct and the gall bladder. The surgeon said her gall bladder was massive.
Back in the room, thankfully she slept a lot the first day.
This was her first time out of bed. This was the same time period that she was not talking to me. You can see her frustration with me in her face.
This was during her first walk down the hall. This was hard for her.
Her first smile, she was warming back up to me again.
Her first drink request, Sprite.
Her main food request, Cheetos. She also requested specifically Zoe's hummus. She got both!
So all in all, we are looking at this as a blessing. This was truly a difficult thing for Lilly to go through, and it took a long time to fix the problem. The blessing comes in the comfort that this future "cancer" was removed from her body while in it's initial form. She is a trooper and as of today she is perfectly healthy. She is back to normal activities and is as happy as ever!
