Maddie is in the hospital again. In the ICU, to be exact.
I realize that, based on my last post, it’s right where we left her, but in real-time that was 6 months ago. Since then we came home, had a dreary (emotionally) but virtually trouble-free (health-wise) winter and spring, she went back to school, finished kindergarten, and seemed to be recovering as expected post-transplant.
Then she started getting fevers that wouldn’t go away.
Let me back up. Not all the way to winter and spring because those are lengthy posts in themselves but at least back to April.
She came to the emergency room at the end of April with a fever and congestion. It turned out that she had an ear infection and sinusitis. A dose of IV antibiotics and we were out the door. Except the fevers continued off and on and a tender lump on her neck became more and more painful, and when the pain went away the lump (lymph node) continued to grow.
A month later, we found ourselves back in the Emergency Department. Her fevers had returned more frequently and more importantly, she had tested positive for Epstein-Barr Virus (EBV). This illness is particularly bad for a transplant kid. Let me explain as best I can.
Almost everyone (close to 95% of all adults) has been exposed to this virus and can build up antibodies against it. Normally, being sick with EBV doesn’t feel like anything more than regular cold symptoms. You never even know you have that particular virus. Kids who haven’t been exposed before organ transplant can contract the virus from the donor organ, blood products (from transfusion), or from saliva contact, and then experience greater effects than normal because their bodies are immune-suppressed. They’re unable to build up the antibodies to fight it off like healthy kids can. Some people end up having EBV infection that can result in mononucleosis (mono) which is not fun, but people with immune suppression face greater challenges, including contracting lymphoma, a cancer of the the lymphatic system.
That’s what her transplant/cardiology team began worrying about when we went to the ER in May. If the body cannot fight off the EBV, the virus’ DNA can begin to infiltrate the lymphnodes through the lymphocytes (a type of white blood cell) in the blood that begin overproducing and acting abnormally. It’s a disease called Post Transplant Lymphoproliferative Disorder (PTLD) which means that it spreads throughout the lymphatic system. The CT scan she received that night showed nothing more than the one enlarged lymph node we found on her neck. Good news but not conclusive. All we could do at that point was watch and wait.
Last week, after the final course of penicillin was completed and multiple clinic visits showed no real change for the worse and a decrease in the EBV DNA in blood, we began to hope that she had built up enough antibodies against the virus and that she was on the mend.
On Monday she went to school and had a normal day. At 2:30AM that night, I went to check her temperature and she had reached 101.4F. My heart sank. The next morning, after attending her farewell kindergarten picnic on her last day of school, Colin drove her over to Children’s where she was admitted for fevers, cough and congestion. Happy First Day of Summer Vacation!
Infectious Disease doctors began weighing in along with her cardiology team to rule out any other crazy diseases/viruses/infections she could have that would account for the fevers. Blood work, labs, cultures, you name it and nothing was explaining the persistent symptoms. Nothing, nothing, nothing. They hadn’t stopped thinking about PTLD but nothing indicated it was the probable cause.
On Friday, after exhausting many of the viral panels and other tests, she seemed to be stable. They were even talking about possibly discharging her for home. That’s when it all took a turn for the worse.
When she got up to use the bathroom, there was a large amount of blood in her stool. No one saw this coming. They made her NPO (fasting) at 9AM, after eating only a small amount of eggs and cereal for breakfast, and prepped her for what would be the first of 4 procedures to-date. That was the last time she had anything to eat.
She was given a Gastrointestinal Endoscopy on Saturday which showed at least one duodenal ulcer at the beginning of the small intestine. It didn’t appear to be actively bleeding so they assumed there must be more down the tract. The scope doesn’t reach far enough. Ulcers are painful. How she hasn’t been doubled over in continual fetal position like I would do is beyond me but apparently she’s not experiencing pain. She is the definition of stoic.
It’s Monday now, and the bleeding has only gotten worse. She is constantly anemic. Despite four blood transfusions, her continued blood loss keeps her from producing and maintaining her own at a stable rate. She has zero amount of feces at this point, only blood. She’s been on IV drip for fluids and is getting what she needs nutritionally but has not been able to eat like she keeps begging to do since Friday morning. No comfort from a full belly. No social pleasure in sharing a meal. Just fasting until the bleeding stops and in preparation for the general anesthesia she’s needed for procedure after procedure after procedure to find the source of the bleeding.
It’s 4:30PM. Maddie has just returned from Interventional Radiology where they performed an angiogram on the veins leading to her intestines. The good news is they found an abnormal venous malformation (abnormal veins branching out on their own and disrupting normal vein flow) into her cecum which (hopefully) is the main cause of her bleeding. The doctors coiled it off and are hoping that this intervention puts a stop to the horrible “blood pudding” that has poured out of her intestines and into the toilet.
But they’re not sure.
Especially since they don’t even know why she developed those abnormal veins in the first place. And so we need more testing done, spaced out a few more days to give her body a chance to process the internal contrast (dye) that was injected today to see the veins before they give her more contrast during the CT scan scheduled for Wednesday.
So, to sum up: we have no idea why she was having fevers and no real concrete reasons for why she was bleeding. The two are most likely not even related.
We ask for continued prayers and positive energy that Maddie’s care team will find answers as they continue to gather data. We need resolution for this poor little girl who just wants to eat lasagna and go home and play with her brothers.
Thank you to all who have sent messages and have called with love and concern. You, our support and respite, our family and friends, continue to sustain us through prayers and generous acts of kindness. Our lives have been in upheaval for the last 14 months, seemingly with more to come, but your constant nurturing allows us to push on. Forward, ever forward.
Note: I apologize that this post is the first time I’ve updated in 6 months. To be quite honest, I have been majorly depressed since mid-January (again, another long post I hope to write). We have had some good times and happy news to report (including Maddie’s upcoming wish to come true from Make-A-Wish!) but mostly, every single aspect of our journey has felt overwhelming. I simply did not have the mental, physical, or emotional energy to journal it. I am feeling much better now (hooray for the passing of time and some good therapy!) and so I hope to amend that now. From here forward, I’ll try to keep you up to speed. I owe you that, dear ones.