Sunday, October 31, 2010
Sunday, October 31 - Day +18
The last few days have been medically boring, which is the best kind of day you can have in the hospital. Collin sleeps a lot day and night, which I think is in large part due to the Risperdone, but he needs the rest, so right now it's a good thing. The tremors seem to have stopped for the most part; but we don't know if they are really gone, or if the Risperdone has stopped them. He is off the oxygen completely, and is having no trouble maintaining his O2 sats. He is slowly losing the extra weight he gained because of the fluid in his abdomen, and his abdominal circumference is also slowly dropping. We had to bring size six diapers in from home because the size fives he was using suddenly didn't fit when his belly was so distended, and even then the size sixes barely fit; now they are fitting more normally. He has been afebrile for days, and is off the IV antibiotics. His white blood cell count has dropped to a more normal level, which also means he is free of infection. He has started to take some juice off a spoon, and is keeping it down better than he was a few days ago. He still requires occasional transfusions of blood products, mostly packed red blood cells or platelets, but they are not as frequent as they were. His ammonia level is slowly dropping, as is his bilirubin level. He may have another doppler of his liver some time this week to check the direction of the bloodflow through it, and if that shows improvement, he may not need the full twenty-one day course of Defibrotide. He has stopped rubbing his eyes as vigorously as he was, and although I'm sure his right eye feels better as the corneal abrasion heals, another thought occurred to me yesterday: all of the tiny eyelashes (and eyebrows and hair) that had started to grow are gone again, and maybe the eyelashes were itching his eyes as they fell out. Now that I think about it, I think the same thing happened the first time he lost his eyelashes in May or June. And surprisingly in the last two days, we have noticed even more of an improvement in his left eye; it seems to be turning out to the center more and staying there for longer periods of time. It makes me wonder how much his vision has changed (if at all), because now he puts his little hand up to his forehead sometimes, almost like he may have a headache or feel dizzy. Oh how I wish he could tell us! Overall, he seems to be making small improvements every day. I feel a lot better about things than I did in the beginning of the week, and have even managed to get some sleep. Thank you all for your prayers, support, encouragement, and well wishes! You have helped hold me up when I didn't think I could stand anymore!
Thursday, October 28, 2010
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.
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.
Saturday, October 23, 2010
Saturday, October 23
9:15 pm
We are back in our room on west hall, and Collin is resting peacefully. I think I may actually get some good, restful sleep tonight!
We are back in our room on west hall, and Collin is resting peacefully. I think I may actually get some good, restful sleep tonight!
Saturday, October 23 - Day +10
Collin had a good night and rested comfortably for most of it. Early this morning he woke up crying and had some extra Morphine. After looking at his labs and seeing his white blood cell count, I'm thinking he's having the bone pain from Neupogen and engraftment. He's off the Neupogen now, but his marrow is working hard to push out the white blood cells; I think they have doubled every 12 hours or so. His belly girth is a cm smaller, and he's had some really wet diapers after this morning's dose of Lasix. And the Defibrotide is infusing right now! His kidneys are doing fine, and his liver is slightly improved...his bilirubin is down a tiny bit which happened last night on its own, and it's still within normal limits. He is on very little O2, and they will try again to see if he can maintain his sats above 94 on room air today. He was smiling at me this morning, and wanted to sit up. He is very alert, looking around right now, and seems comfortable. The nurses here have been as wonderful as they were in April, and the PICU docs just rounded on him and I sat in on it. I was able to follow along with no problem, and when I asked questions I think I sounded like I know what's going on. His nurse this morning asked me if I had a medical background! I said just on-the-job training...
We will be going back home to our family in the hem/onc wing later today! :o)
We will be going back home to our family in the hem/onc wing later today! :o)
Friday, October 22, 2010
Friday, 9:40 pm
There's not much new to tell right now, which is a good thing. Collin requires a lot less oxygen, and is breathing much easier. He is sleeping, and seems comfortable when he sleeps. When he wakes, it's a different story; he cries and is very upset. I imagine his belly is uncomfortable, and I'm sure he doesn't like having his hands restrained to the bed (so he doesn't pull off the oxygen). He also knows he's in a different place. Luckily I seem to be able to calm him down without too much difficulty, and he goes back to sleep.
Some of his medications have been changed or stopped in preparation for the Defibrotide. At this point Collin is NPO, which means he is not allowed to eat anything by mouth. This is so that his liver isn't taxed further by having to help with digestion, along with the fact that eating is probably the last thing he'd want to do with his belly being so uncomfortable. He will remain NPO for a few weeks, as this condition will take at least that long to resolve, even once the Defibrotide is started. He is still receiving the TPN (IV nutrition) at a slower rate. Luckily he shouldn't have any permanent liver damage, and I was surprised to see that his bilirubin level had gone down a smidge instead of up. He is still getting the diuretic intermittently, and he has had some really wet diapers. His belly girth (59.5 cm!) has not changed since this morning; at least it hasn't gotten any bigger. He is stable for now, and hopefully tomorrow he will be able to return "home" to his room, which luckily has so far been held for him to come back to. I feel like there is a plan in place, and I feel a lot more confident that this is going to turn out ok. And it's amazing what a short nap and a shower can do for the soul; I feel like a new person! Thank you again for all of the love and prayers that have been sent our way!
Some of his medications have been changed or stopped in preparation for the Defibrotide. At this point Collin is NPO, which means he is not allowed to eat anything by mouth. This is so that his liver isn't taxed further by having to help with digestion, along with the fact that eating is probably the last thing he'd want to do with his belly being so uncomfortable. He will remain NPO for a few weeks, as this condition will take at least that long to resolve, even once the Defibrotide is started. He is still receiving the TPN (IV nutrition) at a slower rate. Luckily he shouldn't have any permanent liver damage, and I was surprised to see that his bilirubin level had gone down a smidge instead of up. He is still getting the diuretic intermittently, and he has had some really wet diapers. His belly girth (59.5 cm!) has not changed since this morning; at least it hasn't gotten any bigger. He is stable for now, and hopefully tomorrow he will be able to return "home" to his room, which luckily has so far been held for him to come back to. I feel like there is a plan in place, and I feel a lot more confident that this is going to turn out ok. And it's amazing what a short nap and a shower can do for the soul; I feel like a new person! Thank you again for all of the love and prayers that have been sent our way!
Friday, 12:55 pm
UPDATE:
We just found out the drug was approved!! It will be sent by courier from CHOP and should be here tonite or tomorrow. Furthermore, they may re-think the study criteria for children, because they have had the request before. Thank you everyone for your prayers, love, and support!!! We are forever grateful!!! I will continue to keep you updated...
We just found out the drug was approved!! It will be sent by courier from CHOP and should be here tonite or tomorrow. Furthermore, they may re-think the study criteria for children, because they have had the request before. Thank you everyone for your prayers, love, and support!!! We are forever grateful!!! I will continue to keep you updated...
Friday, October 22 -Day +9
Wednesday Collin seemed to be doing a little better. He was afebrile all day, which was a welcome change. His diarrhea slowed down. He received another blood transfusion and another platelet transfusion. He rested a lot, but did have one or two times when he sat up for a bit and was interested in playing. When I weighed him in the morning, his weight had increased by .6 k in 24 hours, which is 1.32 lbs. He was also puffy looking. This meant his fluid output was lower than what he was taking in, so he was given a dose of Lasix, a diuretic, to help him pee more to get rid of some fluid. He also was switched to a different anti-fungal drug instead of the one that had caused rigors and possibly some of the increased temperatures (referred to as "shaking and baking") the day before.
Wednesday night before I went to sleep, I thought Collin felt warm when I changed his diaper. Sure enough, he had a low grade fever and was given Tylenol. Around 4:30 Thursday morning, he woke up crying. I checked his diaper but it wasn't wet. I was trying to comfort him, and his nurse came in. She asked about his diaper, and I told her it was dry, and I figured someone had changed him. She said she had changed him a while before then, but that diaper hadn't been wet either. She had let the covering resident know, and the resident had contacted the covering physician, but he didn't feel it was necessary to order another dose of diuretic at that time. So at 4:30 am, Collin still had not peed much, he was so puffy that his belly was hard and his bellybutton was sticking out, and he was having some difficulty breathing. We weighed Collin, and his weight had increased another .9 k, which is almost 2 lbs. His oxygen level was also decreased, and he seemed to be having slight difficulty breathing. The attending physician was notified, and he finally ordered a dose of Lasix, and X-Rays of Collin's chest and belly.
Later in the morning, when the attending physician came by, he said the X-Ray showed haziness in Collin's right lung, which could have been either from fluid or infection. He ordered more Lasix to try to help Collin's system get rid of some of the fluid it was retaining. Another chest x-ray would be done Friday morning to see if the right lung had improved after some of the fluid was reduced. The doctor also ordered a doppler ultrasound study to be done on Collin's liver. Finally, he added a steroid and a nebulizer treatment to reduce the upper airway inflammation that was evident when Collin was breathing. He felt this was because Collin's white blood cell count had jumped overnight, so there were white blood cells, whose job it is to fight infection, attacking the mucositis in Collin's body, which can cause inflammation.
The nebulizer treatment and the steroid seemed to help Collin's stridor. He was put on oxygen and we switched the humidifier that we had rigged over his bed to oxygen from regular air to try to prevent his from getting too dried out. He was doing well and maintaining his oxygen saturation level throughout the day. The liver ultrasound showed that Collin's blood was going into his liver, but instead of going out of the liver after being filtered, it was backing up and seeping out the way it came in. At that point he had all but one symptom of VOD, or veno-occlusive disease, a complication from the high dose chemo and stem cell transplant.
From Wikipedia:
"Hepatic veno-occlusive disease or veno-occlusive disease (VOD) is a condition in which some of the small veins in the liver are blocked. It is a complication of high-dose chemotherapy given before a bone marrow transplant (BMT) and is marked by weight gain due to fluid retention, increased liver size, and raised levels of bilirubin in the blood. The name sinusoidal obstruction syndrome is now preferred if VOD happens as a result of chemotherapy or bone marrow transplantation. In the BMT setting, VOD is felt to be due to injury to the hepatic venous endothelium from the conditioning regimen."
Basically, the high dose chemo injured the vein walls, which allows fluid to leak out of the veins into open spaces, called third spaces, in the body. It was likened to a hose that has holes in it; when water goes through the hose, it comes out of the little holes instead of going all the way through the hose like it's supposed to. This fluid is leaking into Collin's abdominal cavity, which is putting pressure on his lungs, making it difficult to breathe. The blood vessels that carry blood through the liver become swollen and blocked. Without a supply of blood, the liver cannot remove toxins, drugs, and other waste products from the bloodstream. Pressure and fluids build up in the liver, causing swelling and tenderness in the liver area. The kidneys may retain excess water, causing fluid to build up in the body and swelling in the legs, arms, and abdomen. In severe cases of VOD, excess fluid in the abdominal cavity puts pressure on the lungs making it difficult to breathe. Symptoms of VOD include rapid weight gain, swelling, jaundice, an enlarged liver, pain or tenderness in the area of the liver, and accumulation of fluid in the abdominal cavity (called ascites).
There is no actual cure for VOD. The medical team tries to prevent more serious complications, which can include kidney, heart and lung failure, and even death. Collin has all of the symptoms but the jaundice. His bilirubin level is slowly climbing, but is still within normal limits. There is a drug called Defibrotide which can successfully treat the VOD over time. While the drug has been used in Europe for twenty some years, it has not been approved by the FDA for use in the US. The drug company that makes it is performing clinical trials, and Collin meets all the criteria for the trial but one: his bilirubin level isn't high enough yet. So at this point the only thing we can do is manage the symptoms he has now; oxygen to help him breathe, diuretics to help get rid of some of the fluid, pain meds to keep him as comfortable as possible, and possibly having to tap his abdomen to drain some of the fluid out. The problem with tapping his belly is the risk of infection or bleeding; his immune system is still very weak, and he requires regular platelet transfusions to help his blood clotting abilities so he doesn't bleed to death. Once his bilirubin reaches a certain level, he would qualify for the study and could start the drug. The medical team is going to call the study coordinator and ask if an exception can be made, but I've been told not to get my hopes up that they will allow Collin to have the drug before his bilirubin reaches the required level. I'm praying for compasison, because it seems ridiculous to wait until he gets worse when we know he's headed that way anyway.
So last night, Collin was maintaining his oxygen saturation level on oxygen one minute, and then that changed in an instant. Despite oxygen his sats were dropping, and nothing we did was increasing them. Collin's nurse called for a rapid response, and within a minute or two there were twenty different people in his room assessing Collin. He was rushed back to the pediatric intensive care unit where they are better equipped to handle such an emergency.
The team finally got him stabilized, and another chest X-Ray was done. This showed marked improvement in the haziness that was seen yesterday. This morning when the transplant doctor stopped in, he said they are trying to get the drug, but until they can, either out of compassion or because Collin's bilirubin goes high enough, they will do everything they can to maintain Collin's condition and prevent him from getting worse. At this point there is little hope the condition will turn around on it's own. So far, there has not been permanent damage done to Collin's liver. At tnis point, the condition isn't likely to be fatal, but the doctor said he won't sugar-coat things and that it could head that way, but he will let us know if things are headed that way. The transplant doctor, Collin's oncologist, and his hem/onc nurses have seen kids in worse condition than Collin is in survive, so I am trying not to lose hope.
After rounds this morning, the plan is to keep Collin in the PICU another night. There are many calls into the people in control of the Defibrotide; it seems they are preparing to ship the drug from Dallas so that it is here when it's needed, whether they allow him to have it early or his bilirubin level gets high enough. At the rate the level has increased so far, it probably won't be long until it's high enough to qualify for the trial anyway. I will do my best to post updates as I have them.
Wednesday night before I went to sleep, I thought Collin felt warm when I changed his diaper. Sure enough, he had a low grade fever and was given Tylenol. Around 4:30 Thursday morning, he woke up crying. I checked his diaper but it wasn't wet. I was trying to comfort him, and his nurse came in. She asked about his diaper, and I told her it was dry, and I figured someone had changed him. She said she had changed him a while before then, but that diaper hadn't been wet either. She had let the covering resident know, and the resident had contacted the covering physician, but he didn't feel it was necessary to order another dose of diuretic at that time. So at 4:30 am, Collin still had not peed much, he was so puffy that his belly was hard and his bellybutton was sticking out, and he was having some difficulty breathing. We weighed Collin, and his weight had increased another .9 k, which is almost 2 lbs. His oxygen level was also decreased, and he seemed to be having slight difficulty breathing. The attending physician was notified, and he finally ordered a dose of Lasix, and X-Rays of Collin's chest and belly.
Later in the morning, when the attending physician came by, he said the X-Ray showed haziness in Collin's right lung, which could have been either from fluid or infection. He ordered more Lasix to try to help Collin's system get rid of some of the fluid it was retaining. Another chest x-ray would be done Friday morning to see if the right lung had improved after some of the fluid was reduced. The doctor also ordered a doppler ultrasound study to be done on Collin's liver. Finally, he added a steroid and a nebulizer treatment to reduce the upper airway inflammation that was evident when Collin was breathing. He felt this was because Collin's white blood cell count had jumped overnight, so there were white blood cells, whose job it is to fight infection, attacking the mucositis in Collin's body, which can cause inflammation.
The nebulizer treatment and the steroid seemed to help Collin's stridor. He was put on oxygen and we switched the humidifier that we had rigged over his bed to oxygen from regular air to try to prevent his from getting too dried out. He was doing well and maintaining his oxygen saturation level throughout the day. The liver ultrasound showed that Collin's blood was going into his liver, but instead of going out of the liver after being filtered, it was backing up and seeping out the way it came in. At that point he had all but one symptom of VOD, or veno-occlusive disease, a complication from the high dose chemo and stem cell transplant.
From Wikipedia:
"Hepatic veno-occlusive disease or veno-occlusive disease (VOD) is a condition in which some of the small veins in the liver are blocked. It is a complication of high-dose chemotherapy given before a bone marrow transplant (BMT) and is marked by weight gain due to fluid retention, increased liver size, and raised levels of bilirubin in the blood. The name sinusoidal obstruction syndrome is now preferred if VOD happens as a result of chemotherapy or bone marrow transplantation. In the BMT setting, VOD is felt to be due to injury to the hepatic venous endothelium from the conditioning regimen."
Basically, the high dose chemo injured the vein walls, which allows fluid to leak out of the veins into open spaces, called third spaces, in the body. It was likened to a hose that has holes in it; when water goes through the hose, it comes out of the little holes instead of going all the way through the hose like it's supposed to. This fluid is leaking into Collin's abdominal cavity, which is putting pressure on his lungs, making it difficult to breathe. The blood vessels that carry blood through the liver become swollen and blocked. Without a supply of blood, the liver cannot remove toxins, drugs, and other waste products from the bloodstream. Pressure and fluids build up in the liver, causing swelling and tenderness in the liver area. The kidneys may retain excess water, causing fluid to build up in the body and swelling in the legs, arms, and abdomen. In severe cases of VOD, excess fluid in the abdominal cavity puts pressure on the lungs making it difficult to breathe. Symptoms of VOD include rapid weight gain, swelling, jaundice, an enlarged liver, pain or tenderness in the area of the liver, and accumulation of fluid in the abdominal cavity (called ascites).
There is no actual cure for VOD. The medical team tries to prevent more serious complications, which can include kidney, heart and lung failure, and even death. Collin has all of the symptoms but the jaundice. His bilirubin level is slowly climbing, but is still within normal limits. There is a drug called Defibrotide which can successfully treat the VOD over time. While the drug has been used in Europe for twenty some years, it has not been approved by the FDA for use in the US. The drug company that makes it is performing clinical trials, and Collin meets all the criteria for the trial but one: his bilirubin level isn't high enough yet. So at this point the only thing we can do is manage the symptoms he has now; oxygen to help him breathe, diuretics to help get rid of some of the fluid, pain meds to keep him as comfortable as possible, and possibly having to tap his abdomen to drain some of the fluid out. The problem with tapping his belly is the risk of infection or bleeding; his immune system is still very weak, and he requires regular platelet transfusions to help his blood clotting abilities so he doesn't bleed to death. Once his bilirubin reaches a certain level, he would qualify for the study and could start the drug. The medical team is going to call the study coordinator and ask if an exception can be made, but I've been told not to get my hopes up that they will allow Collin to have the drug before his bilirubin reaches the required level. I'm praying for compasison, because it seems ridiculous to wait until he gets worse when we know he's headed that way anyway.
So last night, Collin was maintaining his oxygen saturation level on oxygen one minute, and then that changed in an instant. Despite oxygen his sats were dropping, and nothing we did was increasing them. Collin's nurse called for a rapid response, and within a minute or two there were twenty different people in his room assessing Collin. He was rushed back to the pediatric intensive care unit where they are better equipped to handle such an emergency.
The team finally got him stabilized, and another chest X-Ray was done. This showed marked improvement in the haziness that was seen yesterday. This morning when the transplant doctor stopped in, he said they are trying to get the drug, but until they can, either out of compassion or because Collin's bilirubin goes high enough, they will do everything they can to maintain Collin's condition and prevent him from getting worse. At this point there is little hope the condition will turn around on it's own. So far, there has not been permanent damage done to Collin's liver. At tnis point, the condition isn't likely to be fatal, but the doctor said he won't sugar-coat things and that it could head that way, but he will let us know if things are headed that way. The transplant doctor, Collin's oncologist, and his hem/onc nurses have seen kids in worse condition than Collin is in survive, so I am trying not to lose hope.
After rounds this morning, the plan is to keep Collin in the PICU another night. There are many calls into the people in control of the Defibrotide; it seems they are preparing to ship the drug from Dallas so that it is here when it's needed, whether they allow him to have it early or his bilirubin level gets high enough. At the rate the level has increased so far, it probably won't be long until it's high enough to qualify for the trial anyway. I will do my best to post updates as I have them.
Tuesday, October 19, 2010
Tuesday, October 19 - Day +6
Well, not long after last night's entry, my hopes for a peaceful night were dashed. Collin's fever went up to 104.4 despite a dose of Tylenol an hour earlier, and his nurse got him an ice pack to lay on to help bring the fever down. Later, he started rubbing his nose and eyes, and wouldn't stop. I wondered if he was very dry because of the dry hospital air and the Benadryl, so we hung a makeshift humidifier over his bed, and gave him lubricating eye drops and saline nasal spray to try to make him less itchy, but they didn't seem to help. His eyes were red and puffy, and he ended up with some bruising between the inside of his right eye and the bridge of his nose. As it turns out, his platelet count had plumeted, which caused him to bruise very easily, so he had another platelet transfusion this morning. I requested a few doses of Morphine throughout the night so that he wasn't too uncomfortable, and this morning he was put on a Morphine pump. I also learned this morning that stool cultures came back positive for C-Diff, so he was started on another antibiotic to treat that infection.
Today, Collin's fevers continued, and he was also given an antifungal drug called Abelcet. The drug was given via IV infusion over two hours. During the two hour infusion, his blood pressure was taken every fifteen minutes. About halfway through the infusion, he developed extreme shivering/shaking called rigors, and was given four doses of Demerol to get the reaction under control. If he gets the drug again tomorrow, he will be given Demerol before and during the infusion to hopefully prevent the reaction; I am hoping that his blood counts will miraculously increase over night so that maybe he doesn't need to get another dose of the drug. Then shortly after the infusion was complete and the rigors stopped, his temperature went up to 104.7, and he started to shiver and shake once again. Another dose of Tylenol and cold washcloths on his forehead and the back of his neck helped get the fever under control.
I haven't slept well since we were admitted, and the last twenty four hours were no different. I'm utterly exhausted. While it is very hard seeing Collin so sick after he's been doing so well, I know that in a few days he will start to turn around again, just like he's done every time before this. He is such a fighter, and he is stronger than I will ever be.
Today, Collin's fevers continued, and he was also given an antifungal drug called Abelcet. The drug was given via IV infusion over two hours. During the two hour infusion, his blood pressure was taken every fifteen minutes. About halfway through the infusion, he developed extreme shivering/shaking called rigors, and was given four doses of Demerol to get the reaction under control. If he gets the drug again tomorrow, he will be given Demerol before and during the infusion to hopefully prevent the reaction; I am hoping that his blood counts will miraculously increase over night so that maybe he doesn't need to get another dose of the drug. Then shortly after the infusion was complete and the rigors stopped, his temperature went up to 104.7, and he started to shiver and shake once again. Another dose of Tylenol and cold washcloths on his forehead and the back of his neck helped get the fever under control.
I haven't slept well since we were admitted, and the last twenty four hours were no different. I'm utterly exhausted. While it is very hard seeing Collin so sick after he's been doing so well, I know that in a few days he will start to turn around again, just like he's done every time before this. He is such a fighter, and he is stronger than I will ever be.
Monday, October 18, 2010
Monday, October 18 - Day +5
Collin's fever has continued to come and go since my last blog entry; this afternoon it was 103.5. The mucositis is ugly. He continues to have diarrhea, and despite being changed as soon as he goes and being slathered with heavy-duty diaper cream, his poor little bottom is so red and sore that when I go to change his diaper, he shakes his head and says "no." Unfortunately today he had a number of episodes of vomiting mucus, and we have to suction his mouth out when he vomits to help get the mucus out. Tonight when I did his mouth care I saw that the inside of his mouth was bleeding, and almost looked like it was peeling. He is not able to eat anything by mouth because it hurts too much, so he is getting IV nutrition. His fast growing cells are definitely being sloughed off, which also means that the tiny bit of peach fuzz hair and eye lashed that have started to come in will fall out soon. Yet despite obviously feeling pretty crappy, Collin still manages to smile and play every so often. He is so incredibly strong, and I am continuously in awe of him. As I type this entry, Collin is resting peacefully with the help of Morphine, Benadryl, and Ativan, so I am going to take advantage of that and get some rest myself.
Collin turned 22 months old today!
Collin turned 22 months old today!
Saturday, October 16, 2010
Saturday, October 16 - Day +3
Collin has had a fever on and off throughout last night and today. He is on the broad-spectrum antibiotics, and is getting Tylenol for the fevers. Despite the fevers, his day was better than I expected it to be. His mouth doesn't seem to be any worse, and he didn't seem to be uncomfortable or need Morphine today. He still has some diarrhea, but no vomiting. He ate a few bites of food for breakfast and dinner today, and had short periods of time when he wanted to sit up and play with toys. Overall he didn't seem any worse today than he did yesterday; I am surprised but grateful!
Today I met the mother of a beautiful little boy named Caiden, sixteen months old, who is undergoing his first round of chemo and having a rough time. Please keep him and his family in your prayers!
Today I met the mother of a beautiful little boy named Caiden, sixteen months old, who is undergoing his first round of chemo and having a rough time. Please keep him and his family in your prayers!
Friday, October 15, 2010
Friday, October 15 - Day +2
Around 12:30 Thursday morning, Collin woke up a little fussy, and then I heard him fill his diaper. As I was changing him, he continued to have diarrhea; I'd get him cleaned up, and he'd go again right away. Then as I continued to get him cleaned up, he vomited quite a large volume. I ended up having to bathe him and change all of his bedding. Then we had to change the dressing over his Broviac because it was smelly. I hated having to change the dressing so soon after it had been put back on Monday after the Thiotepa baths were done, because the skin on Collin's chest was so red and raw. It took three of us to accomplish the dressing change; one nurse to do the dressing, another to hold Collin's hands so he didn't reach up and touch the sterile field, and me holding a disposable chuck pad under his chin so he didn't vomit all over his chest. He did vomit again during the dressing change, and we were afraid he aspirated some of it into his lungs because of how he was laying (on his back) and because it took him a minute to get his breath. After we finally got the dressing changed and everything cleaned up for the last time, Collin was given more antiemetics to help with the vomiting, and his tube feeds were stopped. Two residents came up to assess him, and based on how his lungs sounded, they didn't feel he had aspirated any emesis.
Collin spent most of Thursday morning sleeping. Then a little before lunch time, he perked up, and when the lunch tray came, he wanted to eat. He ended up eating a whole bowl of chicken noodle soup and six saltines. After he ate, he went back to sleep, and later was sitting up in bed playing. Then out of the blue, he vomited again, pretty much everything he ate for lunch. His oncologist felt the vomiting and diarrhea may have been caused by the stem cell preservative, not necessarily mucositis yet. In the end it doesn't matter what the cause was, it just stinks to see Collin sick like that.
Over Thursday night into this morning, Collin continued with the diarrhea, so last night wasn't restful either. Today the diarrhea had some blood in it. He had received platelet transfusions Wednesday and Thursday morning, as well as this morning, and because of the blood in his diaper this afternoon, he received another platelet transfusion this afternoon. The frequent need for platelets is expected after transplant, so at least I'm not surprised by all the transfusions.
Collin has now developed mouth sores (which he's never had before), and is unable to eat even though he may be feeling hungry. Tonight he was started on TPN, the IV nutrition he was on in the first round of chemo back in May. He had a dose of Morphine this afternoon, and will probably need to be on a continuous Morphine drip very soon (mucositis has been described as a mouth full of canker sores, and a sunburned GI tract). He is drooling a lot because of the mouth sores, and is sounding more congested. I have been told that the mucositis is usually at it's worst around days four and five after transplant, so I expect this weekend will be rough. Collin also developed a fever tonight, so the usual blood cultures, etc. will be done, and he is being started on antibiotics.
Collin spent most of Thursday morning sleeping. Then a little before lunch time, he perked up, and when the lunch tray came, he wanted to eat. He ended up eating a whole bowl of chicken noodle soup and six saltines. After he ate, he went back to sleep, and later was sitting up in bed playing. Then out of the blue, he vomited again, pretty much everything he ate for lunch. His oncologist felt the vomiting and diarrhea may have been caused by the stem cell preservative, not necessarily mucositis yet. In the end it doesn't matter what the cause was, it just stinks to see Collin sick like that.
Over Thursday night into this morning, Collin continued with the diarrhea, so last night wasn't restful either. Today the diarrhea had some blood in it. He had received platelet transfusions Wednesday and Thursday morning, as well as this morning, and because of the blood in his diaper this afternoon, he received another platelet transfusion this afternoon. The frequent need for platelets is expected after transplant, so at least I'm not surprised by all the transfusions.
Collin has now developed mouth sores (which he's never had before), and is unable to eat even though he may be feeling hungry. Tonight he was started on TPN, the IV nutrition he was on in the first round of chemo back in May. He had a dose of Morphine this afternoon, and will probably need to be on a continuous Morphine drip very soon (mucositis has been described as a mouth full of canker sores, and a sunburned GI tract). He is drooling a lot because of the mouth sores, and is sounding more congested. I have been told that the mucositis is usually at it's worst around days four and five after transplant, so I expect this weekend will be rough. Collin also developed a fever tonight, so the usual blood cultures, etc. will be done, and he is being started on antibiotics.
Wednesday, October 13, 2010
Wednesday, October 13...Day 0...Transplant Day!
Today was the big day, the day Collin would get back some of his stem cells that were collected on Memorial Day. The last five months of chemo, plus the mega high doses of chemo that Collin received last week, all led up to today. Without the stem cell rescue today, Collin's blood counts would not recover from the high dose chemo.
It was important that the stem cells not be transfused too early so that they were not affected by any of the chemo drugs, so Monday and Tuesday were "days of rest" between the last dose of chemo and the stem cell transfusion. Monday afternoon was the last of the every-six-hour baths (YAY!), and I also replaced Collin's feeding tube. Tuesday, Collin had a transfusion of blood platelets, which help the blood to clot. He also had great therapy sessions with the occupational and physical therapists.
This morning began with another transfusion of blood platelets, because despite yesterday's transfusion, his platelet count continued to drop. There was a lot of behind-the-scenes prep for the stem cell transfusion, which was scheduled to take place around 11:00 am, but our morning was pretty routine and quiet. Collin was assigned a nurse who spent most of the day in his room, to monitor his blood pressure and heart closely. A cart carrying a container that held the stem cells still frozen in liquid nitrogen, as well as a machine to thaw them, was wheeled into the room. Two of the attending oncologists, Collin's nurse practitioner, the nurse assigned to monitor him, and another nurse who was observing the procedure, all gathered in the room with us. Collin had already been pre-medicated with the usual Tylenol, Benadryl, and Zofran to prevent allergic reactions and nausea, and was hooked up to the blood pressure and heart monitors. The man who brought the stem cells to the room thawed them right there, and then the nurse practitioner injected them slowly into the IV line connected to Collin's Broviac. In less than ten minutes, the stem cell infusion was complete, and because the Benadryl made Collin drowsy, he slept through the procedure. There were no complications with Collin's blood pressure or heart rate, and other than the smell of the preservative the stem cells were stored in, which smells like creamed corn, there are no other lingering side effects from the procedure. Collin's breath and diapers should stop smelling like creamed corn in a day or two. Now we just wait for the stem cells to graft and help bring Collin's blood counts back up, and hope that he doesn't develop a bad case of mucositis over the next week. Thank you for all of the love and prayers that have been sent our way!
It was important that the stem cells not be transfused too early so that they were not affected by any of the chemo drugs, so Monday and Tuesday were "days of rest" between the last dose of chemo and the stem cell transfusion. Monday afternoon was the last of the every-six-hour baths (YAY!), and I also replaced Collin's feeding tube. Tuesday, Collin had a transfusion of blood platelets, which help the blood to clot. He also had great therapy sessions with the occupational and physical therapists.
This morning began with another transfusion of blood platelets, because despite yesterday's transfusion, his platelet count continued to drop. There was a lot of behind-the-scenes prep for the stem cell transfusion, which was scheduled to take place around 11:00 am, but our morning was pretty routine and quiet. Collin was assigned a nurse who spent most of the day in his room, to monitor his blood pressure and heart closely. A cart carrying a container that held the stem cells still frozen in liquid nitrogen, as well as a machine to thaw them, was wheeled into the room. Two of the attending oncologists, Collin's nurse practitioner, the nurse assigned to monitor him, and another nurse who was observing the procedure, all gathered in the room with us. Collin had already been pre-medicated with the usual Tylenol, Benadryl, and Zofran to prevent allergic reactions and nausea, and was hooked up to the blood pressure and heart monitors. The man who brought the stem cells to the room thawed them right there, and then the nurse practitioner injected them slowly into the IV line connected to Collin's Broviac. In less than ten minutes, the stem cell infusion was complete, and because the Benadryl made Collin drowsy, he slept through the procedure. There were no complications with Collin's blood pressure or heart rate, and other than the smell of the preservative the stem cells were stored in, which smells like creamed corn, there are no other lingering side effects from the procedure. Collin's breath and diapers should stop smelling like creamed corn in a day or two. Now we just wait for the stem cells to graft and help bring Collin's blood counts back up, and hope that he doesn't develop a bad case of mucositis over the next week. Thank you for all of the love and prayers that have been sent our way!
Sunday, October 10, 2010
Sunday, October 10, Day (-3)
On Wednesday and Thursday of this past week, Collin received more Carboplatin. Carboplatin isn't as nauseating as other chemo drugs, so the days went pretty smoothly and Collin seemed to feel pretty well. On Friday, Saturday, and today, the Thiotepa and Etoposide were given. The Thiotepa is the chemo that is excreted through the skin, so Collin had to be bathed every six hours for the three days he received the Thiotepa, and then for another twenty four hours after the end of the last infusion of Thiotepa. We tried to come up with a bath schedule that didn't interfere with the hour he has to eat each meal, but unfortunately there was no way to avoid waking him in the middle of the night for a bath. The schedule we decided on was 3:30 am, 9:30 am, 3:00 pm, and 9:00 pm. Normally I try to have Collin in bed for the night by 8:00 pm, but I didn't want to wake him an hour after getting him to sleep, so I kept him up until the 9:00 pm sponge bath was done. After each bath, all of his bedding had to be changed, and Bill and I wore gowns if we were holding him to protect our skin from having prolonged contact with the chemo. The schedule has been draining on Collin and me; we are physically and mentally exhausted. The last scheduled bath will be 3:00 tomorrow afternoon, and then we can return to a more normal routine of earlier bedtime, fewer interruptions of sleep during the night, and one bath a day. Collin's skin is red and sore from the chemo and baths. The dressing over his Broviac had to be removed, so following each bath, the site had to be cleaned with Chloraprep and covered with gauze. The Chloraprep stings his skin, and we've had to be extra careful not to accidentally pull on his IV lines since there's not much of a dressing in place to help prevent the Broviac from being pulled out of his chest. Monday afternoon can't come soon enough.
Over the last few days, Collin's appetite has decreased. He seems interested in his meal tray when he sees it, but then doesn't eat very much. He has had some episodes of vomiting, and is on staggered doses of Zofran, Benadryl, and Ativan to help reduce nausea. The taste of some of his oral medications seems to make him gag and throw up, so it's getting harder to get him to take his meds. He is expected to start with mucositis in a few days, so Monday afternoon his feeding tube will be replaced before it becomes too painful to do so. At least then it will be easier to get his oral medications into him. Monday and Tuesday are days of rest (no chemo), and then on Wednesday he will have the transfusion of his stem cells that were collected on Memorial Day that will rescue his body from the effects of the high dose chemo he's received over the last week.
Over the last few days, Collin's appetite has decreased. He seems interested in his meal tray when he sees it, but then doesn't eat very much. He has had some episodes of vomiting, and is on staggered doses of Zofran, Benadryl, and Ativan to help reduce nausea. The taste of some of his oral medications seems to make him gag and throw up, so it's getting harder to get him to take his meds. He is expected to start with mucositis in a few days, so Monday afternoon his feeding tube will be replaced before it becomes too painful to do so. At least then it will be easier to get his oral medications into him. Monday and Tuesday are days of rest (no chemo), and then on Wednesday he will have the transfusion of his stem cells that were collected on Memorial Day that will rescue his body from the effects of the high dose chemo he's received over the last week.
Tuesday, October 5, 2010
Tuesday, October 5, Day (-8)
Collin was admitted to the hospital yesterday afternoon for the high dose chemo and stem cell transplant round. I spent most of last Friday, Saturday, and Sunday working to get everything ready for the hospital. Collin and I live out of a suitcase so that we're prepared to go back to the hospital in an emergency, and I keep two bins of toys packed in the living room along with other hospital necessities like a highchair, etc. Even though the clothes in the suitcases were clean, I had to re-wash everything and then seal the clothes in plastic bags, and then clean the suitcases before I put the bags of clothes back into them. I also had to unpack the bins of toys and books, and wipe down the bins and all the contents with Clorox wipes, and seal the toys in the bins until we got to the hospital. Then once we got to the room, the outside of everything had to be wiped down before it could come into the room. The goal is to have everything as clean as possible since Collin's immune system will be so compromised after the chemo and stem cell rescue. The hospital preparation was exhausting, and on top of that I was trying to do some housecleaning and laundry so that I wasn't leaving the house a mess. Of course there is a lot more to do before Collin is discharged back home, but I am thankful that with the help of family and friends, everything will get done.
When I got Collin out of the car and into his stroller once we got to the hospital yesterday, the poor kid started shaking his head and saying, "no, no, no." He was definitely not pleased to be back, and had some major temper tantrums last night. He's been through so much and it's completely understandable that he would be upset, and I tried telling myself to be thankful that he has the ability to throw a tantrum. But the frustrating thing was that his first tantrum, which was because I cut up his hot dog and he wanted to pick it up and eat it whole, lasted a whole hour. I couldn't get him to calm down so I could safely feed him and not risk him choking, so he ended up missing dinner because his tray can't stay in the room longer than an hour because they don't want to chance bacteria growing on the food and making him sick. Later when he calmed down I got him something else to eat, but then something sent him into another tantrum, and he threw the food on the floor. He had to be hungry last night when he went to bed, but it's hard to reason with an almost-two-year-old.
Yesterday Collin was started on IV fluids, and then was given the IVIg. It was infused slowly so that he didn't have the scary reaction he had the first time he received the drug in June. Luckily everything went smoothly and he had no negative reactions. Today, he had his first infusion of Carboplatin, which ran over four hours. He tolerated it with no problems. Everything today went very smoothly; Collin was in a good mood, had great therapy sessions, ate well and took his medicine orally with no problems (his feeding tube came out in his sleep Saturday night, and as long as he ate well and took his medicine, we didn't have to replace it right away because he wouldn't be receiving tube feeds during the chemo. It will have to be replaced probably early next week before the mucositis starts so that it's not too painful to put back in). I hope tomorrow goes just as smoothly as today did!
When I got Collin out of the car and into his stroller once we got to the hospital yesterday, the poor kid started shaking his head and saying, "no, no, no." He was definitely not pleased to be back, and had some major temper tantrums last night. He's been through so much and it's completely understandable that he would be upset, and I tried telling myself to be thankful that he has the ability to throw a tantrum. But the frustrating thing was that his first tantrum, which was because I cut up his hot dog and he wanted to pick it up and eat it whole, lasted a whole hour. I couldn't get him to calm down so I could safely feed him and not risk him choking, so he ended up missing dinner because his tray can't stay in the room longer than an hour because they don't want to chance bacteria growing on the food and making him sick. Later when he calmed down I got him something else to eat, but then something sent him into another tantrum, and he threw the food on the floor. He had to be hungry last night when he went to bed, but it's hard to reason with an almost-two-year-old.
Yesterday Collin was started on IV fluids, and then was given the IVIg. It was infused slowly so that he didn't have the scary reaction he had the first time he received the drug in June. Luckily everything went smoothly and he had no negative reactions. Today, he had his first infusion of Carboplatin, which ran over four hours. He tolerated it with no problems. Everything today went very smoothly; Collin was in a good mood, had great therapy sessions, ate well and took his medicine orally with no problems (his feeding tube came out in his sleep Saturday night, and as long as he ate well and took his medicine, we didn't have to replace it right away because he wouldn't be receiving tube feeds during the chemo. It will have to be replaced probably early next week before the mucositis starts so that it's not too painful to put back in). I hope tomorrow goes just as smoothly as today did!
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