I was initially hesitant to begin journaling on this site again as I was hoping Conley's infection was an isolated incident and we would go home and back our "normal" life again, not needing to send any updates because nothing "exciting" was happening. I fought this urge for weeks as I continued to deny that this would end in an ongoing battle. But, as many of you know, that is not the case. We are at the bottom of an uphill journey once again.
To update you on how the past few months have been would be as exhausting and painful as living through it all over again. But, in a way, it is very therapeutic to know there are so many people who love Conley just as much as we do. We have so much support out there and I want to make sure that everyone is well informed just how difficult these next few months will be for all of . Conley had an amazing 8 months at home, thriving and kicking kidney disease's ass. But several weeks ago, we started noticing some signs that something serious was going on. He was having serious tummy pain, stopped sitting up, crying inconsolably during dialysis, and just overall was not presenting as himself. He is so happy that we knew something was wrong. Mommy spent weeks going from specialist to specialist begging for help and answers, but I was told that it was "gas, teething, or a growth spurt," even though I knew that was not the case. My heart hurt for Conley as he was in so much pain and discomfort, and there was nothing we could do for him, and there was no comfort medically either. Little did we know that a serious bacteria infection was growing in the entry site of his dialysis catheter. The infection is believed to be caused by water, though specialists have no specific source identified. The consensus right now is that it is a normal growing bacteria in tap water, which can be infectious to this population, though that is a working theory. The problem with this infection was that it was slow growing and there no "signs" that the specialists found alarming, such as fever or poor dialysis indicators. Long story short, Conley's infection had spread to the point where he required multiple surgeries to remove the dialysis catheter in his tummy that he had used since birth, meaning he would no longer be able to sustain life in that manner. He started antibiotics immediately and he had surgery to remove his peritoneal catheter, which was the anchor of the infection. A few days later, he had another surgery to place a catheter for hemodialysis, which is another type of life saving dialysis for people in kidney failure. During this surgery, he also had a series of procedures done to check for other complications, including an echocargiogram, MRI of his brain, and a biopsy of a mass that was by his liver (which they initially thought was part of the infection). Everything went well for all of the surgeries and the procedures, and Conley has adjusted well to his new form of treatment. (Just for reference, hemodialysis and peritoneal dialysis are both used to treat kidney failure. Hemodialysis filters wastes and remove extra fluid from the blood. Peritoneal dialysis uses the lining of the abdominal cavity to remove wastes and extra fluid from the body. Doctors typically like to use peritoneal dialysis for children as they can do it on a daily basis at home, and it is not as straining on their small growing and developing bodies. With Hemodialysis, we now have to go to the doctor's office three times a week to have treatment (instead of at home) and it can cause some serious strain on the body as it works directly through Conley's heart).
As many of you know, Conley's infection, though serious, was caught early and is now under control with a range of antibiotics. He was IV antibiotics during his 21 day stay in the hospital, though he is now on oral antibiotics that can be given at home. He also has responded extremely well to Hemodialysis. On an unfortunate note, during the process of an ultrasound and CT scan to see how far the infection spread, we found a mass next to his liver that turned out to be cancerous. He received an MRI the day prior to being discharged and it revealed that the mass is in fact Hepatoblastoma, which is an uncommon malignant liver cancer that occurs in infants and small children. All of our specialists reviewed the MRI images and decided it would be best to have surgery to remove the mass completely. Luckily, it was caught so early that they believe they can remove the whole thing without needing to resort to chemotherapy, though this still questionable. Conley will have major surgery on January 11th to remove the mass. We have an amazing surgeon that has been with Conley from birth, and we have complete faith in him. However, he has never done this type of surgery (removing the mass) on a child that also has kidney failure. So, of course, there are significant risks. We are backed into a corner because if we do not do the surgery, the tumor could grow and make Conley ineligible for kidney transplant. Conley will likely be in the hospital for several weeks so he can be monitored closely as he recovers from such a serious surgery.
In the meantime, we are all enjoying some family time at home before we begin our next journey with surgery. I can't even begin to describe how wonderful it is to wake up with ALL of my boys together. Also, Conley's pain and discomfort is mostly gone and he is making strides developmentally, such as waving, clapping, signing mama and papa, and moving from his bottom to hands and knees. With how many surgeries this kid has had on his tummy, these are HUGE for him. He really is an amazing, smart child. Lastly, Daddy and Conley will have boys week next week as Mommy and Choice head to California to visit family. This will be mommy's first time away from Conley, but it's about time mommy and Choice get some uninterrupted quality time together!!
To update you on how the past few months have been would be as exhausting and painful as living through it all over again. But, in a way, it is very therapeutic to know there are so many people who love Conley just as much as we do. We have so much support out there and I want to make sure that everyone is well informed just how difficult these next few months will be for all of . Conley had an amazing 8 months at home, thriving and kicking kidney disease's ass. But several weeks ago, we started noticing some signs that something serious was going on. He was having serious tummy pain, stopped sitting up, crying inconsolably during dialysis, and just overall was not presenting as himself. He is so happy that we knew something was wrong. Mommy spent weeks going from specialist to specialist begging for help and answers, but I was told that it was "gas, teething, or a growth spurt," even though I knew that was not the case. My heart hurt for Conley as he was in so much pain and discomfort, and there was nothing we could do for him, and there was no comfort medically either. Little did we know that a serious bacteria infection was growing in the entry site of his dialysis catheter. The infection is believed to be caused by water, though specialists have no specific source identified. The consensus right now is that it is a normal growing bacteria in tap water, which can be infectious to this population, though that is a working theory. The problem with this infection was that it was slow growing and there no "signs" that the specialists found alarming, such as fever or poor dialysis indicators. Long story short, Conley's infection had spread to the point where he required multiple surgeries to remove the dialysis catheter in his tummy that he had used since birth, meaning he would no longer be able to sustain life in that manner. He started antibiotics immediately and he had surgery to remove his peritoneal catheter, which was the anchor of the infection. A few days later, he had another surgery to place a catheter for hemodialysis, which is another type of life saving dialysis for people in kidney failure. During this surgery, he also had a series of procedures done to check for other complications, including an echocargiogram, MRI of his brain, and a biopsy of a mass that was by his liver (which they initially thought was part of the infection). Everything went well for all of the surgeries and the procedures, and Conley has adjusted well to his new form of treatment. (Just for reference, hemodialysis and peritoneal dialysis are both used to treat kidney failure. Hemodialysis filters wastes and remove extra fluid from the blood. Peritoneal dialysis uses the lining of the abdominal cavity to remove wastes and extra fluid from the body. Doctors typically like to use peritoneal dialysis for children as they can do it on a daily basis at home, and it is not as straining on their small growing and developing bodies. With Hemodialysis, we now have to go to the doctor's office three times a week to have treatment (instead of at home) and it can cause some serious strain on the body as it works directly through Conley's heart).
As many of you know, Conley's infection, though serious, was caught early and is now under control with a range of antibiotics. He was IV antibiotics during his 21 day stay in the hospital, though he is now on oral antibiotics that can be given at home. He also has responded extremely well to Hemodialysis. On an unfortunate note, during the process of an ultrasound and CT scan to see how far the infection spread, we found a mass next to his liver that turned out to be cancerous. He received an MRI the day prior to being discharged and it revealed that the mass is in fact Hepatoblastoma, which is an uncommon malignant liver cancer that occurs in infants and small children. All of our specialists reviewed the MRI images and decided it would be best to have surgery to remove the mass completely. Luckily, it was caught so early that they believe they can remove the whole thing without needing to resort to chemotherapy, though this still questionable. Conley will have major surgery on January 11th to remove the mass. We have an amazing surgeon that has been with Conley from birth, and we have complete faith in him. However, he has never done this type of surgery (removing the mass) on a child that also has kidney failure. So, of course, there are significant risks. We are backed into a corner because if we do not do the surgery, the tumor could grow and make Conley ineligible for kidney transplant. Conley will likely be in the hospital for several weeks so he can be monitored closely as he recovers from such a serious surgery.
In the meantime, we are all enjoying some family time at home before we begin our next journey with surgery. I can't even begin to describe how wonderful it is to wake up with ALL of my boys together. Also, Conley's pain and discomfort is mostly gone and he is making strides developmentally, such as waving, clapping, signing mama and papa, and moving from his bottom to hands and knees. With how many surgeries this kid has had on his tummy, these are HUGE for him. He really is an amazing, smart child. Lastly, Daddy and Conley will have boys week next week as Mommy and Choice head to California to visit family. This will be mommy's first time away from Conley, but it's about time mommy and Choice get some uninterrupted quality time together!!
As always, thanks for all of your support and positive thoughts during this time.
For those of you interested in reading about Conley's journey prior to this post, you can view our CaringBridge site here
