Thursday, October 28 - Day +15

Saturday night, Collin had a small nosebleed; his nose was very dry because of the oxygen, and he was constantly rubbing his eyes and nose when he was awake. His platelet count was also low, so he had another platelet transfusion overnight. We also tried a dose of Benadryl, which really seemed to help alleviate the itching of his face.

On Sunday, Collin rested quietly for most of the day. He wasn't very verbal, and hadn't really tried talking since his visit to the PICU. He spent the day either sleeping, or laying in the bed staring. His blood pressure was low, and his heart rate was elevated, but this was likely due to the diuretics. Diuretics cause the kidneys to add more sodium to the urine which will then be excreted by the body. When the sodium is excreted it takes along extra water with it as well. This reduces the amount of water in the blood stream, which means that there will be less pressure exerted on the artery walls. Therefore blood pressure will be lower, which in turn can raise the heart rate because the heart works harder to pump a smaller volume of fluid. His resting heart rate was elevated, and when he got excited, his heart rate increased dramatically. Increased heart rate can also be a side effect of the Defibrotide that is supposed to help Collin's liver, so we were watching it carefully.

Very early Monday morning, Collin woke up and was unable to be still. He had tremors which reminded me of how someone with Parkinson's disease may look. The tremors continued all day, and Collin was not able to get any rest. Since we were not sure what the cause of the tremors was, the Defibrotide was held, and some tests were ordered to try to pinpoint a reason Collin was unable to be still. A chest x-ray was done to make sure the Defibrotide wasn't causing any bleeding in his lungs; thankfully his lungs were fine. By late Monday afternoon, Collin was unable to sit up on his own without falling over, and at one point he could not even hold his head up straight. The attending physician came to see Collin again, but wasn't sure what was causing the tremors or weakness. By that point I was terrified; no one had any idea what was wrong with Collin, and Collin seemed distressed. Suddenly, this child who has been through so much already seemed to be getting a lot worse, quickly. I wondered what we had done to him that could have caused this reaction, and I had a bad feeling that he wasn't going to survive whatever this was. The attending physician asked the nurse practitioner if Collin's ammonia level had been checked. It hadn't been, so they drew blood to check the level. It came back elevated, which indicated that Collin's liver was not able to filter his blood properly, and toxins were building up in his body. The attending physician felt that hepatic encephalopathy was a possibility. Hepatic encephalopathy is a worsening of brain function that occurs when the liver is not able to remove toxic substances in the blood, and it may occur suddenly when damage occurs to the liver. Ammonia, which is produced by the body when proteins are digested, is one of the harmful substances that is normally made harmless by the liver. Many other substances may also build up in the body if the liver is not working well, and they can cause damage to the nervous system. So, changes were made in Collin's medications; medications that are normally broken down by the liver were stopped, he was given extra potassium, and his TPN formula was changed to have less protein in it. Tylenol was held unless he needed it for a very high fever, so to try to alleviate the low-grade fevers that Collin was having, we used cold wet washcloths on his forhead and the back of his neck. He had another CT scan, but that was also negative for any findings. While he was sedated for the CT scan, an ophthalmology resident came to examine his eyes, because they were so irritated from constantly being rubbed. She found a corneal abrasion on his right eye, and prescribed an antibiotic ointment for his eye. I don't know if Collin has been rubbing his eyes because the corneal abrasion was causing him discomfort, or if the constant rubbing caused the corneal abrasion.

Monday night was not very restful; Collin was still having twitching or tremors even in his sleep. On Tuesday, he seemed more agitated when he was awake, and would yell or cry at times. The medical team decided to consult a neurologist. She examined Collin and decided to order an MRI to look at an area of the brain that doesn't show up well on a CT scan to rule out a bleed or a stroke. On Wednesday, we were told the MRI was negative, and the neurologist talked about doing an EEG to rule out seizures. She felt the likelihood of seizure activity was very low, and since putting on the EEG  probes requires scrubbing the head with exfoliant, I didn't think an EEG was a good idea; Collin bleeds easily right now and is at risk for infection, so leaving him with a head full of abrasions wasn't something I wanted to consent to. 

The team also consulted a gastroenterologist to see what he thought. He agreed Collin has veno-occlusive disease, but did not feel he had hepatic encephalopathy. He said while Collin's ammonia level was elevated, it was not alarmingly high, and Collin's other liver function numbers were turning around. Collin had had a doppler ultrasound of his liver last week which is what showed the blood flow backing up in the liver, but the gastroenterologist wanted to have another ultrasound of the liver to get a look at the amount of injury to the liver tissue. The ultrasound was done late yesterday afternoon. The gastroenterologist told us today that the ultrasound showed Collin's liver is enlarged, and that the whole liver is injured. While that sounds bad, he said it's actually better than just being damaged in one area, because it supports the VOD diagnosis, and doesn't look there is anything else going on. He said that although it will take some time, the liver will heal and there won't be any permanent damage.

Last evening, Collin had another transfusion of a blood product, this time cryoprecipitate, which contains a protein called Fibrinogen that plays a key role in blood clotting. Fibrinogen is manufactured in the liver, but since Collin's liver isn't functioning quite right, his level was low; since he has had a few nosebleeds, it is important to make sure his blood can clot properly.

On Tuesday night, Collin was started on Risperdone to see if it would help calm the tremors. It has seemed to help, but also makes Collin drowsy, so this morning his morning dose was lowered so he would be less drowsy during the day. It has helped Collin rest more peacefully at night, and last night I got my first full night's sleep in weeks. Today his IV antibiotics were stopped, because he has not had a fever for a few days, blood cultures were negative for infection, and his white blood cell count has dropped to almost normal, which means there is no infection present. His morphine has also been lowered since his mucositis has healed and he shouldn't be in any pain. We will watch closely to make sure he doesn't have or develop pain in his belly, which could indicate that the extra fluid in his abdomen has become infected. Collin has been off oxygen for twenty four hours now, and has had no problems breathing. His ammonia level has not increased, and his other blood levels are normalizing. His extra weight from the fluid is slowly coming down, as is his abdominal circumference. The speech therapist tried getting Collin interested in eating or drinking a little something today, but because the fluid in his belly is probably pushing against his stomach (and other organs) and making it smaller right now, Collin isn't hungry and had no interest in eating or drinking. We will just keep offering tastes of food or drink, and he will let us know when he is ready. 

Overall, it seems like Collin is making small improvements every day, just like he always has. The VOD has added a few weeks to our hospital stay, but as long as he continues to improve, nothing else matters. Please keep praying for Collin, little Caiden, little Sean (two other toddler cancer warriors on the unit), and all of the other children who unfairly have to battle this horrible disease.