Thank you Tina, Rocky, and Elisha for watching the rest of the troops! I know they had a blast!
Saturday, April 28, 2012
April 26th Appnt
Cole saw the nephrologist on Thursday. We saw Dr. Steinke herself. She had concerns regarding the repeat infections, and had been in contact with Dr. Steinhardt, who still feels he would like to wait it out barring a substantial number of future infections before he goes ahead with surgery to correct the reflux; he wants to try and get him as close to one year of age as he can. She felt something may need to be done sooner to protect the kidney function he does have. We weren't really able to establish a specific parameter as far as how many infections he could have before she felt there was no option but to correct it sooner. We may be going to see another peds urologist out of U of M for a second opinion. She did explain to us that even with the surgery, the reflux would still be present, improved at best, and that resolving on its own as some kids do is not an option for him due to the severity, though it may come down from grade V to say a grade IV. She showed us the images from the VCUG again. I realized then that what I'd originally thought was his ureter the last time we saw the films was in fact the part of the catheter that was curled up on his belly under his papoose; his actual ureter when she pointed it out was severely dilated- I thought it was bowel in the back round before, that's what it looks like. It was a little shocking. We had no idea how dilated they were. So, our discharge sheet now boasts Congenital Hydroureter on its list of diagnosis. We could have gone the rest of the day not knowing that. She pointed out that unlike a very straight forward reflux, with the amount of dilation his ureters have, the urine not only travels up to the kidneys, it basically sits in a cesspool and slowly washes around. No wonder he's soooo prone to infection. She told us how much more complicated the surgery becomes then, as Steinhardt will have to taper the ureters also, stitching them down the sides as well as the reimplantation. Nerve wracking decision, especially as it would be four different surgeries between correcting reflux and both obstructions, doing one side at a time. We also learned that Cole is missing some of his ab muscles, having not been able to develop all of them due to the dilation of his kidneys and ureters. She predicted he'd still meet his milestones with mobility, that he'd just work the muscles he does have harder. She estimated his kidneys function at about 50%. We also saw the last three renal ultrasounds, which don't appear to have gotten worse. They are definitely echogenic (see all these fancy terms I've learned?), and you can see the healthy tissue all along the outside, thinned, but there, and then the entire middle of the kidney, which should have grey matter throughout, is solid black, just full of urine. Looks hollow. There was a resident in the room, following her, and you could see her eyes get wide before she put on her game face. Then she stood there silent. Happened to us a few times now. I think that's when you realize how bad it is. I talked to her a bit about feeling so guilty, about it being genetic. I won't delve into that but she is such a compassionate Dr. I asked her if she had a specific charity that contributes to research they utilize, or to kids they treat, as Mike and I would like to start a small sort of fundraiser in Cole's name to contribute to a larger one, something positive. She suggested the NKF or Make a Wish. Then she went on to say that all of her transplant kids will go on a Make a Wish trip, that Cole would. I freaked a little, saying "I thought that was for terminal things", to which she said, no, "its for life threatening illnesses". That was so hard. Makes it very real. Our son has a "life-threatening illness", or will have. So, with that thought we headed back over to the lab, and awaited the results which we received by phone yesterday. His BUN was down, 9; Creatinine .46, which is even lower than the .5 it had plateaued at, Iron stores a little low so switched to a vitamin with Iron, and increased his Bicitra to cover his weight gain. And FINALLY, a blood type. I held my breath and prayed- and he's B+...so am I!! Think I cried a good half hour over that, I'm so grateful and relieved. God is good! Doesn't guarantee I'm a match but its such a comfort to know I'm not ruled out. So that was all wonderful news, and despite the upset of Thursday, the most important thing is he's growing and thriving and his labs look good right now!
Thank you Tina, Rocky, and Elisha for watching the rest of the troops! I know they had a blast!
Thank you Tina, Rocky, and Elisha for watching the rest of the troops! I know they had a blast!
The Back Story
I should have started posting here for Cole months ago, so while I hate to focus entirely on his health here, this first post is a catch up for those that need some back round. I'm hoping this will be a good way to keep everyone who's been so kind as to ask us about how he's doing informed. We're learning that its hard to get through a day of hospitals and tests, harder still sometimes to share it all when you haven't really processed it yourself. One of the hardest parts thus far of having a little guy with a chronic illness has been that the sharing where he is concerned is often focused on his health; it seems at times that it overshadows the blessing that he is and the joy that he brings. So this will be a place to keep everyone in the loop, but also to celebrate him!
So, for those that don't know, we learned when I was about 17 weeks along that Cole had significant hydronephrosis and a couple of choroid plexus cysts, the later of which resolved over the course of the next month, but because of the degree of dilation of the kidneys and the fact that the cysts had been present also put him at a higher risk for down syndrome, etc, we were sent to Maternal Fetal Medicine in GR. While its some what common for fetal hydronephrosis to resolve on its own, Cole's worsened, though every specialist we saw thought it might be due to vesicoureteral reflux, which my oldest daughter also had, and possibly a partially open posterior urethral valve. After a consult with the peds urologist, the consensus was that he likely had bilateral UPJ obstructions which may at least partially resolve by 18 months on their own, at which point he may need surgery to correct it. They didn't see or anticipate any damage to the kidneys. He was followed with serial scans until they induced labor at Spectrum at 39 weeks. After a lovely thirty hour induction, Cole was here! When he was 12 hours old, he had a VCUG done to test for reflux, which he was found to have, grade V bilaterally. They ruled out a posterior urethral valve. He also had a renal ultrasound. We were actually relieved at that point thinking that while reflux is miserable, at least we knew how to deal with it, and they wouldn't need to correct a valve issue surgically on our newborn son. We left radiology exhausted and ready to finally be able to focus on just enjoying our little guy with out so much worry. When we got back to our room, a pediatric nephrologist we hadn't met, Dr. Steinke, who has come to be a God send we absolutely love, was waiting for us. She asked how he'd been eating, and we told her that he'd nursed well at birth, but that since then he'd been taken for tests nearly every time he was awake. She then told us that perhaps it was the renal failure that was causing him to be lethargic. We stared at her in disbelief and almost annoyance; Who was this lady in our room and where did she get this idea from? Our son had straight forward reflux. I remember thinking she had the wrong room. I don't remember much of what she went on to say, other than she wanted to start him on a prophylactic antibiotic immediately. I kept thinking, "Where is his Dr, this is a mistake, we've been reassured for months he'd be fine". I couldn't wait for her to just leave us alone. It wasn't until a couple of hours later, when Dr. Steinhardt, the peds urologist that had treated my oldest for the last decade, came to our room with a couple of pediatricians, a nurse, and a social worker that it sunk in. He told us that Cole's kidneys looked very weak, that they didn't think they were likely to function very well, if at all, that we may not be going home. The world was suddenly standing still. It was so surreal. My mother showed up a few minutes later with our other children to meet him. They each held him just long enough for a picture and then had to leave so the Dr's could finish evaluating him and come up with a game plan for the night. Dr. Steinke came back late that night, such a wonderful person. I remember she talked to us about transplants and how he would have to be 15lbs; blood types and cross matches.. I don't think I'll ever forget the feeling I had lying in the bed that night exhausted and stunned, listening to all the kids in the hallway cheerfully announcing their new siblings to the nurses on their way out, the sickening feeling of realization that we were going to have to tell our kids their brother wasn't coming home. The sadness and the awful guilt, wondering how in the world we were going to take care of our other kids. I don't think we've ever prayed so hard before. The next three days were a blur of mini victories; his first labs showed he had some renal function; when he hadn't peed in hours and they were calling in the Dr's he suddenly peed all over a nurse and the bed; sitting under the bili lights for two days in those ridiculous Rey Charles goggles. And finally, his labs trended down and we could go home. HOME!! Thank the Lord. And so started a long two months of trips to Grand Rapids and our local pediatrician's office, labs and weights and meds to adjust. But amazingly his labs trended down far beyond what anyone had predicted they could, and continued to do so. They told us he will need a transplant at some point; that his renal function is supporting him right now, and they will watch his growth spurts especially closely, as eventually he will over tax his kidneys. He was growing beautifully, which was at this point the most important indicator, and was so happy. If we didn't know, we'd have no indication anything was wrong. Then, in mid March, Cole had to have a nuc med scan to determine if there were any obstructions that had caused the dilation in the first place, and to test his renal function. When we arrived in peds sedation, I learned he had to be cathed. While Mike parked the van (we were right on time as usual, lol) I called the nephrologist. My experience with Kaitlynn and reflux taught me to fear the cath. She would almost always develop an infection afterwards. They expressed it was important that they have this test done, and felt that the prophylactic he was on would be enough to head off infection. The test went well, and our follow up appnt with nephrology showed that his creatinine and BUN had come down even more! We were given the official diagnoses of Acute Renal Failure, Bilateral Hydronephrosis Grade IV, Bilateral Vesicoureteral Reflux Grade V. All seemed well, until the following night. Cole seemed too tired. We paged nephrology, but as there was no fever or vomiting, he felt it was likely a touch of the crud our other children had. Feeling like a paranoid mother, I paged his local physician too, and agreed with her again that with out fever, it was probably a cold and we decided to have him come into the office in the morning, wary of putting him thru the pokes and prods of an ER eval. We went from the Dr's office to the ER the next morning. To make a very long story short, he went bad very quickly, he had a bad UTI, kidney infection, sepsis, went to Devos by ambulance. There they thought with as sick as he was and the positive blood cultures and his young age that he may have meningitis, so he had a spinal tap. They had to make several attempts to start a line, and then pull everything off to adjust the cath and re-tape. Just miserable. But by the end of day two he seemed to be turning around. Another couple of days and we went home. While we were there we did learn that he had bilateral UPJ obstructions, and possibly a heart murmur, though no one has found it again since so they've chalked that up to his being dehydrated. He finished his antibiotics and we thought things were looking up. Four days after his last dose, the day before we were to see nephrology again, he seemed too content to sleep in his bouncy, we felt him, thought he was warm. Three hours later, back to Devos by ambulance with another UTI/kidney infection. He wasn't as sick this time as we caught it early. He did have a rough go with his IV, which ended up being in a scalp vein; the connector leaked, and after they pulled of all the tegaderm and re taped it all (no fun), it ended up going slowly subq the next day. He still has a bruise there. So hard to watch him in pain; especially as he doesn't understand. We learned with this visit that this is genetic, primarily prevalent among light skinned europeans. In fact the majority of the cutting edge research comes out of Scandinavia. There's an American university, I think U of Iowa? Anyhow, they're a few years away from pin pointing the genetic mutation. Interesting. Another four days there, and we were back home. This time they started Cole on a prophylactic again right away after his infection cleared, hoping that it prevents infection long enough for the inflammation in his bladder to heal. So far, he's infection free! We spent a good week trying to figure out which prophylactic to go with, as the nephrologist and the urologist have differing opinions. He spiked a fever the week before last, the same day he had a negative UA, and after pacing the floor with him I opted to risk annoying Dr. Steinke. Bless her heart she talked to us for a good 20 minutes. He was fine the next day, but I sat staring at him all night. I'm sure we must drive his pediatricians here nuts; they've been so good to us! Always so kind. We've been so blessed to have so many wonderful Dr's and nurses caring for him, and wonderful office staff!
So, that's the back story. Sorry its so long winded, almost 4 months in a nutshell. Through it all he's been so so happy! He's a fighter, and such a blessing!
So, for those that don't know, we learned when I was about 17 weeks along that Cole had significant hydronephrosis and a couple of choroid plexus cysts, the later of which resolved over the course of the next month, but because of the degree of dilation of the kidneys and the fact that the cysts had been present also put him at a higher risk for down syndrome, etc, we were sent to Maternal Fetal Medicine in GR. While its some what common for fetal hydronephrosis to resolve on its own, Cole's worsened, though every specialist we saw thought it might be due to vesicoureteral reflux, which my oldest daughter also had, and possibly a partially open posterior urethral valve. After a consult with the peds urologist, the consensus was that he likely had bilateral UPJ obstructions which may at least partially resolve by 18 months on their own, at which point he may need surgery to correct it. They didn't see or anticipate any damage to the kidneys. He was followed with serial scans until they induced labor at Spectrum at 39 weeks. After a lovely thirty hour induction, Cole was here! When he was 12 hours old, he had a VCUG done to test for reflux, which he was found to have, grade V bilaterally. They ruled out a posterior urethral valve. He also had a renal ultrasound. We were actually relieved at that point thinking that while reflux is miserable, at least we knew how to deal with it, and they wouldn't need to correct a valve issue surgically on our newborn son. We left radiology exhausted and ready to finally be able to focus on just enjoying our little guy with out so much worry. When we got back to our room, a pediatric nephrologist we hadn't met, Dr. Steinke, who has come to be a God send we absolutely love, was waiting for us. She asked how he'd been eating, and we told her that he'd nursed well at birth, but that since then he'd been taken for tests nearly every time he was awake. She then told us that perhaps it was the renal failure that was causing him to be lethargic. We stared at her in disbelief and almost annoyance; Who was this lady in our room and where did she get this idea from? Our son had straight forward reflux. I remember thinking she had the wrong room. I don't remember much of what she went on to say, other than she wanted to start him on a prophylactic antibiotic immediately. I kept thinking, "Where is his Dr, this is a mistake, we've been reassured for months he'd be fine". I couldn't wait for her to just leave us alone. It wasn't until a couple of hours later, when Dr. Steinhardt, the peds urologist that had treated my oldest for the last decade, came to our room with a couple of pediatricians, a nurse, and a social worker that it sunk in. He told us that Cole's kidneys looked very weak, that they didn't think they were likely to function very well, if at all, that we may not be going home. The world was suddenly standing still. It was so surreal. My mother showed up a few minutes later with our other children to meet him. They each held him just long enough for a picture and then had to leave so the Dr's could finish evaluating him and come up with a game plan for the night. Dr. Steinke came back late that night, such a wonderful person. I remember she talked to us about transplants and how he would have to be 15lbs; blood types and cross matches.. I don't think I'll ever forget the feeling I had lying in the bed that night exhausted and stunned, listening to all the kids in the hallway cheerfully announcing their new siblings to the nurses on their way out, the sickening feeling of realization that we were going to have to tell our kids their brother wasn't coming home. The sadness and the awful guilt, wondering how in the world we were going to take care of our other kids. I don't think we've ever prayed so hard before. The next three days were a blur of mini victories; his first labs showed he had some renal function; when he hadn't peed in hours and they were calling in the Dr's he suddenly peed all over a nurse and the bed; sitting under the bili lights for two days in those ridiculous Rey Charles goggles. And finally, his labs trended down and we could go home. HOME!! Thank the Lord. And so started a long two months of trips to Grand Rapids and our local pediatrician's office, labs and weights and meds to adjust. But amazingly his labs trended down far beyond what anyone had predicted they could, and continued to do so. They told us he will need a transplant at some point; that his renal function is supporting him right now, and they will watch his growth spurts especially closely, as eventually he will over tax his kidneys. He was growing beautifully, which was at this point the most important indicator, and was so happy. If we didn't know, we'd have no indication anything was wrong. Then, in mid March, Cole had to have a nuc med scan to determine if there were any obstructions that had caused the dilation in the first place, and to test his renal function. When we arrived in peds sedation, I learned he had to be cathed. While Mike parked the van (we were right on time as usual, lol) I called the nephrologist. My experience with Kaitlynn and reflux taught me to fear the cath. She would almost always develop an infection afterwards. They expressed it was important that they have this test done, and felt that the prophylactic he was on would be enough to head off infection. The test went well, and our follow up appnt with nephrology showed that his creatinine and BUN had come down even more! We were given the official diagnoses of Acute Renal Failure, Bilateral Hydronephrosis Grade IV, Bilateral Vesicoureteral Reflux Grade V. All seemed well, until the following night. Cole seemed too tired. We paged nephrology, but as there was no fever or vomiting, he felt it was likely a touch of the crud our other children had. Feeling like a paranoid mother, I paged his local physician too, and agreed with her again that with out fever, it was probably a cold and we decided to have him come into the office in the morning, wary of putting him thru the pokes and prods of an ER eval. We went from the Dr's office to the ER the next morning. To make a very long story short, he went bad very quickly, he had a bad UTI, kidney infection, sepsis, went to Devos by ambulance. There they thought with as sick as he was and the positive blood cultures and his young age that he may have meningitis, so he had a spinal tap. They had to make several attempts to start a line, and then pull everything off to adjust the cath and re-tape. Just miserable. But by the end of day two he seemed to be turning around. Another couple of days and we went home. While we were there we did learn that he had bilateral UPJ obstructions, and possibly a heart murmur, though no one has found it again since so they've chalked that up to his being dehydrated. He finished his antibiotics and we thought things were looking up. Four days after his last dose, the day before we were to see nephrology again, he seemed too content to sleep in his bouncy, we felt him, thought he was warm. Three hours later, back to Devos by ambulance with another UTI/kidney infection. He wasn't as sick this time as we caught it early. He did have a rough go with his IV, which ended up being in a scalp vein; the connector leaked, and after they pulled of all the tegaderm and re taped it all (no fun), it ended up going slowly subq the next day. He still has a bruise there. So hard to watch him in pain; especially as he doesn't understand. We learned with this visit that this is genetic, primarily prevalent among light skinned europeans. In fact the majority of the cutting edge research comes out of Scandinavia. There's an American university, I think U of Iowa? Anyhow, they're a few years away from pin pointing the genetic mutation. Interesting. Another four days there, and we were back home. This time they started Cole on a prophylactic again right away after his infection cleared, hoping that it prevents infection long enough for the inflammation in his bladder to heal. So far, he's infection free! We spent a good week trying to figure out which prophylactic to go with, as the nephrologist and the urologist have differing opinions. He spiked a fever the week before last, the same day he had a negative UA, and after pacing the floor with him I opted to risk annoying Dr. Steinke. Bless her heart she talked to us for a good 20 minutes. He was fine the next day, but I sat staring at him all night. I'm sure we must drive his pediatricians here nuts; they've been so good to us! Always so kind. We've been so blessed to have so many wonderful Dr's and nurses caring for him, and wonderful office staff!
So, that's the back story. Sorry its so long winded, almost 4 months in a nutshell. Through it all he's been so so happy! He's a fighter, and such a blessing!
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