So I realize I haven't updated since before his last appointment. So that is where I will start.
Nicholas had his appointment with Dr Koyle at sick kids in Toronto and basically was told that because his kidney was so stretched from before that it is always going to look funny and that it will take it's time to work but there is no issue with it and that we should monitor him for high blood pressure about yearly but that there is absolutely nothing to be worried about at this time.
So since that we have had his no checked and he is just fine. He is a wonderful boy about to be 7 just started in grade 2, and so smart receiving the highest grade in his grade for the last 2 years. He is also quite active and is playing hockey and baseball. Baseball was done early this year and hockey is about to start this week.
So unless something changes I'll update as needed.
Tuesday, September 12, 2017
Monday, August 10, 2015
A date, a date, we have a date!! Finally!!
So, today after calling a few times since I last posted, almost a month ago now, and after a long weekend where we travelled to Niagara Falls and marineland for a family vacation, I got the call I was waiting for!! Sick Kids called, as soon as the phone rang I knew who it was and ran. The doctor wants to see Nicholas next Monday, the 17th of August.
He needs to have an ultrasound first, have the radiologist look at the pictures and then see Dr. Koyle after that. Okay, that is the first step, so many questions still loom over my head. I'm relieved, to a point, that I know what the next step is but I'm still unsure and nervous of the step after that, and the time frame for that! and I'm sure that that is all part of the questions I still have.
Now I think I'm more scared, and apparently crying because of it, that my Nicholas has to have a second procedure on his kidney/urinary tract and knowing that this could have been caught when he was a baby. But then again who says that wouldn't have happened then. I'm more upset that we haven't been able to say we are done with trips to Toronto, every time I start thinking that's it we are done, a couple weeks later, oh you need to go back. Where Lucas is now done unless we (or he) thinks he needs to go back, but for Nicholas we are still uncertain, even thought we have ONE date!!
I Love these boys with all my heart and soul.
Next thing is that we had to look and see what we could afford to travel to Toronto. when looking into it, a flight was going to cost us $1028 and to drive and stay a night would be around $300 not a hard decision to make and hopefully we can have more of an advance notice for another date for Nicholas and to see what will be done, mainly to have the availability to fly down as it is a much nicer way to travel to Toronto for quick visits for follow-ups.
He needs to have an ultrasound first, have the radiologist look at the pictures and then see Dr. Koyle after that. Okay, that is the first step, so many questions still loom over my head. I'm relieved, to a point, that I know what the next step is but I'm still unsure and nervous of the step after that, and the time frame for that! and I'm sure that that is all part of the questions I still have.
Now I think I'm more scared, and apparently crying because of it, that my Nicholas has to have a second procedure on his kidney/urinary tract and knowing that this could have been caught when he was a baby. But then again who says that wouldn't have happened then. I'm more upset that we haven't been able to say we are done with trips to Toronto, every time I start thinking that's it we are done, a couple weeks later, oh you need to go back. Where Lucas is now done unless we (or he) thinks he needs to go back, but for Nicholas we are still uncertain, even thought we have ONE date!!
I Love these boys with all my heart and soul.
Next thing is that we had to look and see what we could afford to travel to Toronto. when looking into it, a flight was going to cost us $1028 and to drive and stay a night would be around $300 not a hard decision to make and hopefully we can have more of an advance notice for another date for Nicholas and to see what will be done, mainly to have the availability to fly down as it is a much nicer way to travel to Toronto for quick visits for follow-ups.
Sunday, July 12, 2015
Contact
Okay, so after waiting 3 weeks for a referral to be sent for Nicholas from the urologist in the Sault. Then a week after them saying it was sent. I placed a call to the Sick Kids urology clinic and spoke with the secretary for Dr. Koyle.
She had the referral but Dr. Koyle is on holidays for the month of July and it was just sitting there for his return. Before I had a chance to ask if someone could look at it she told me that she was going to give it to the nurse practitioner that works with Dr. Koyle to have a look at it and she would determine the urgency for a visit. Ahhhh sigh of relief, someone gets it!! My next question was when would we know about an appointment date. The answer could be today, could be next week. I'm okay with that!!!
So an appointment in August is what it's looking like, but in that I'm also thinking, greeeaaat hockey season is starting late Aug early Sept, then school and then I get nervous for him having to have another procedure, most likely surgery, BUT I have this bad habit of getting ahead of myself, and this may be a simple fix!!!
So I'm going to have a phone glued to my side for the next few weeks, until I know a date, place, and time, for Nicholas to be seen. I'm Just glad that I know something is being done, but with that being said if I don't hear anything by this Thursday, a week after I made initial contact with them, I will be calling again, just to see if the referral has been looked at. After all it is my son and I can't help but think that this is his future, his kidney function, his health, MY SON. I'm the one that has to speak for him because he doesn't understand and I do!
Well this is all I have for tonight!! I'm just off to bed, soon, and off to think about up coming events in my like including a family reunion, and a planned trip to marine land!
She had the referral but Dr. Koyle is on holidays for the month of July and it was just sitting there for his return. Before I had a chance to ask if someone could look at it she told me that she was going to give it to the nurse practitioner that works with Dr. Koyle to have a look at it and she would determine the urgency for a visit. Ahhhh sigh of relief, someone gets it!! My next question was when would we know about an appointment date. The answer could be today, could be next week. I'm okay with that!!!
So an appointment in August is what it's looking like, but in that I'm also thinking, greeeaaat hockey season is starting late Aug early Sept, then school and then I get nervous for him having to have another procedure, most likely surgery, BUT I have this bad habit of getting ahead of myself, and this may be a simple fix!!!
So I'm going to have a phone glued to my side for the next few weeks, until I know a date, place, and time, for Nicholas to be seen. I'm Just glad that I know something is being done, but with that being said if I don't hear anything by this Thursday, a week after I made initial contact with them, I will be calling again, just to see if the referral has been looked at. After all it is my son and I can't help but think that this is his future, his kidney function, his health, MY SON. I'm the one that has to speak for him because he doesn't understand and I do!
Well this is all I have for tonight!! I'm just off to bed, soon, and off to think about up coming events in my like including a family reunion, and a planned trip to marine land!
Monday, June 15, 2015
updating
Wow I guess I have left you all hanging on Nicholas!!
Well he had his surgery on August 19, 2013 and he came through like a trooper!! he came home with a drain tube that needed to be removed by his family doctor. Life then continued as normal with us with the odd appointment to see urology in the Sault and follow-up by sick kids. November was his ultra sound to check on his kidney, and it showed a normal kidney, or as normal as it could have been for the assault that was placed on it from birth. and 2 weeks later his urologist from sick kids seen him via telemedicine and said will only see him a year once he is fully potty trained. We have been followed by the urology in the Sault the entire time. now I called sick kids this past November and didn't receive a call back so I let it be.
Now in May Nicholas had another ultrasound and we found that his kidney is swollen again. Not exactly sure why, but sure that there is a blockage. Nicholas had and appointment in July to see urology but that was moved up to the beginning of June, after he had his ultrasound, then at that appointment we found out that Nicholas had to go back to Sick kids to see his original surgeon and they would be able to fix things.
In the mean time 2 days after that appointment In the Sault we got a phone call to return to the Sault area Hospital (SAH) to nuclear med for a kidney scan where the injected a radio opaque dye and watched it move through his kidneys, and that is how to determine if there was a blockage and where that blockage lies. No I haven't heard what the radiologist said about the scan but I do know what I seen and there was a blockage seen. Ok so now what!!
We are now playing the waiting game. I'm watching the porter flight prices as this is how we plan to get there, and waiting near the phone to hopefully see when we have to visit the big city of Toronto again!!
Well he had his surgery on August 19, 2013 and he came through like a trooper!! he came home with a drain tube that needed to be removed by his family doctor. Life then continued as normal with us with the odd appointment to see urology in the Sault and follow-up by sick kids. November was his ultra sound to check on his kidney, and it showed a normal kidney, or as normal as it could have been for the assault that was placed on it from birth. and 2 weeks later his urologist from sick kids seen him via telemedicine and said will only see him a year once he is fully potty trained. We have been followed by the urology in the Sault the entire time. now I called sick kids this past November and didn't receive a call back so I let it be.
Now in May Nicholas had another ultrasound and we found that his kidney is swollen again. Not exactly sure why, but sure that there is a blockage. Nicholas had and appointment in July to see urology but that was moved up to the beginning of June, after he had his ultrasound, then at that appointment we found out that Nicholas had to go back to Sick kids to see his original surgeon and they would be able to fix things.
In the mean time 2 days after that appointment In the Sault we got a phone call to return to the Sault area Hospital (SAH) to nuclear med for a kidney scan where the injected a radio opaque dye and watched it move through his kidneys, and that is how to determine if there was a blockage and where that blockage lies. No I haven't heard what the radiologist said about the scan but I do know what I seen and there was a blockage seen. Ok so now what!!
We are now playing the waiting game. I'm watching the porter flight prices as this is how we plan to get there, and waiting near the phone to hopefully see when we have to visit the big city of Toronto again!!
Monday, August 12, 2013
One week and counting
So in a weeks time Nicholas will have had his surgery and be recovering!!
I'm nervous but knowing that it is so routine and such a short surgery is helping me so much!! The fact that I haven't written on here in a while has been, I think, because I'm not a scared for my little boy as I was for Lucas!! Yeah I'm still nervous, its surgery for Christ sakes, but from what it could have been, much, much easier to take!!
You would never know he had anything wrong, so full of life and never settles but very co-operative and easy going!!! But take him away from his brother and he doesn't really know what to do with himself!!
So for now I just hug him a little harder, shower him in kisses, and try not to think of what is coming!! Even though as I'm thinking of it my eyes are tearing and I start to feel more anxious!!! This is for him, so that he can feel better!!! I love him so much!!!
Here's to guiding the surgeons hands on the day of surgery and for a speedy recovery for my little man!!
I'm nervous but knowing that it is so routine and such a short surgery is helping me so much!! The fact that I haven't written on here in a while has been, I think, because I'm not a scared for my little boy as I was for Lucas!! Yeah I'm still nervous, its surgery for Christ sakes, but from what it could have been, much, much easier to take!!
You would never know he had anything wrong, so full of life and never settles but very co-operative and easy going!!! But take him away from his brother and he doesn't really know what to do with himself!!
So for now I just hug him a little harder, shower him in kisses, and try not to think of what is coming!! Even though as I'm thinking of it my eyes are tearing and I start to feel more anxious!!! This is for him, so that he can feel better!!! I love him so much!!!
Here's to guiding the surgeons hands on the day of surgery and for a speedy recovery for my little man!!
Friday, June 28, 2013
7 weeks away
I can't help but think how quickly this wait is going to go!! And I keep thinking back to our wait when Lucas was having his surgery!!! They will have had surgery 23 months apart!!
For all the worry I had before going to sick kids hospital, the thought of OMG we may have a huge battle and just the thought of what the hell are we going to do, and even the thought of I'm gonna lose my baby!! (as tears start to run down my cheeks) To ok maybe its nothing and this is just not gonna happen. But when we were told I didn't know what to think and I just remember feeling dumbfounded and looking like what, did you just tell me that, and then the feeling of I want to kiss you and hug you!! and shout for joy!! Then so what is going on, nothing can be as bad as we thought and having a constriction is fairly mild in my mind!!! very simple and easy operation to complete!!
Now we have the hotel booked and the date of surgery and the time off so now all we have to do is get is pre-op booked and call to confirm the details!! But I see another very busy summer ahead.
Happy Canada Day weekend to all and stay safe!!! We are off to Manitoulin this weekend to spend time with family!!!
For all the worry I had before going to sick kids hospital, the thought of OMG we may have a huge battle and just the thought of what the hell are we going to do, and even the thought of I'm gonna lose my baby!! (as tears start to run down my cheeks) To ok maybe its nothing and this is just not gonna happen. But when we were told I didn't know what to think and I just remember feeling dumbfounded and looking like what, did you just tell me that, and then the feeling of I want to kiss you and hug you!! and shout for joy!! Then so what is going on, nothing can be as bad as we thought and having a constriction is fairly mild in my mind!!! very simple and easy operation to complete!!
Now we have the hotel booked and the date of surgery and the time off so now all we have to do is get is pre-op booked and call to confirm the details!! But I see another very busy summer ahead.
Happy Canada Day weekend to all and stay safe!!! We are off to Manitoulin this weekend to spend time with family!!!
Friday, June 21, 2013
New Diagnosis and treatment!!
Well that was quite a trip and emotional roller coaster!!!
We went to Toronto on Tuesday for Nicholas to have an ultrasound and consultation appointment on Wednesday. We didn't have to be there until the afternoon so we just walked around and let the boys play a little in the play room of the Delta Chelsea, I love the way they cater to kids, because upon check in both boys got a rubber duckie and a book!! But after their little play in the play room, we had them lay down for a nap as early afternoon appointments make for cranky boys. Nicholas slept for about an hour and Lucas didn't, but he was with poppa while we went for Nicholas' appointments so that didn't matter!!
At about 12 we left the room walked to the hospital, got the boys a little snack, that they didn't eat, and then left Lucas with Poppa to spend the afternoon together, and Chris, myself and Nicholas went off to radiology for Nicholas' ultrasound. His appointment was for 1pm so we were there and waiting by 1245 I think it was a little later then 1 when he was called in but by the time we left there it was about 230pm. We then made our way to 5D where the urology department was and quick pee stop and then off to the exam room to wait for the urologist!!
When someone finally came in he was either a resident or a fellow but he asked us what we knew so we said that we were told it was a tumor, and right away he told us it wasn't a tumor it was a back up of pee, he then asked to examine Nicholas, but he went and answered a page first. Alone for a few moments with our thoughts we were elated, so happy that it wasn't our worst thoughts.
He came back with in a couple minutes and then explained a little more of what was going on, drawing a picture on the paper from the exam table, while he explained that there is a constriction/blockage of the tube that goes from the kidney to the bladder. It's not completely blocked but having this can cause numerous problems including bladder infections and pain and more. He then explained that there was a couple of routes to go with this, the first being to wait and see what happened, watching with ultrasounds and other exams, or the second being surgical treatment. I was leaning towards the 2nd and asked if what he has now could get worse and he told us that it would, so that was what had my final decision of surgery to fix, the problem. This resident also knew without even asking us because he said that you can read the parents when they are told about things like this and we were both saying surgery. We then met Dr Koyle the urologist and he explained the procedure a little more and we couldn't be happier about the out come of this long trip to Toronto.
So Nicholas is now booked for surgery on August 19th for and open pyeloplasty. This is where they make a small cut in his belly locate the kidney and the blockage in the tube to the bladder, make a cut on either side of this and then sew the ends back together. Sounds simple enough!! Nicholas will stay in hospital for 1-2 nights, more then likely 2 nights because we live further away, and then we can go home and resume basically normal life.
Now just to organize everything for the trip!! I have just booked at the Delta Chelsea (which will be the Eaton Chelsea by the time we get there) for $129.00 per night and we booked a 4 night stay, by the time we go home from Toronto I figure we will have spent a good $1500. Oh well what ever we need to do it gets done!
I'll be on again but this is just a summary of this weeks happenings!!
We went to Toronto on Tuesday for Nicholas to have an ultrasound and consultation appointment on Wednesday. We didn't have to be there until the afternoon so we just walked around and let the boys play a little in the play room of the Delta Chelsea, I love the way they cater to kids, because upon check in both boys got a rubber duckie and a book!! But after their little play in the play room, we had them lay down for a nap as early afternoon appointments make for cranky boys. Nicholas slept for about an hour and Lucas didn't, but he was with poppa while we went for Nicholas' appointments so that didn't matter!!
At about 12 we left the room walked to the hospital, got the boys a little snack, that they didn't eat, and then left Lucas with Poppa to spend the afternoon together, and Chris, myself and Nicholas went off to radiology for Nicholas' ultrasound. His appointment was for 1pm so we were there and waiting by 1245 I think it was a little later then 1 when he was called in but by the time we left there it was about 230pm. We then made our way to 5D where the urology department was and quick pee stop and then off to the exam room to wait for the urologist!!
When someone finally came in he was either a resident or a fellow but he asked us what we knew so we said that we were told it was a tumor, and right away he told us it wasn't a tumor it was a back up of pee, he then asked to examine Nicholas, but he went and answered a page first. Alone for a few moments with our thoughts we were elated, so happy that it wasn't our worst thoughts.
He came back with in a couple minutes and then explained a little more of what was going on, drawing a picture on the paper from the exam table, while he explained that there is a constriction/blockage of the tube that goes from the kidney to the bladder. It's not completely blocked but having this can cause numerous problems including bladder infections and pain and more. He then explained that there was a couple of routes to go with this, the first being to wait and see what happened, watching with ultrasounds and other exams, or the second being surgical treatment. I was leaning towards the 2nd and asked if what he has now could get worse and he told us that it would, so that was what had my final decision of surgery to fix, the problem. This resident also knew without even asking us because he said that you can read the parents when they are told about things like this and we were both saying surgery. We then met Dr Koyle the urologist and he explained the procedure a little more and we couldn't be happier about the out come of this long trip to Toronto.
So Nicholas is now booked for surgery on August 19th for and open pyeloplasty. This is where they make a small cut in his belly locate the kidney and the blockage in the tube to the bladder, make a cut on either side of this and then sew the ends back together. Sounds simple enough!! Nicholas will stay in hospital for 1-2 nights, more then likely 2 nights because we live further away, and then we can go home and resume basically normal life.
Now just to organize everything for the trip!! I have just booked at the Delta Chelsea (which will be the Eaton Chelsea by the time we get there) for $129.00 per night and we booked a 4 night stay, by the time we go home from Toronto I figure we will have spent a good $1500. Oh well what ever we need to do it gets done!
I'll be on again but this is just a summary of this weeks happenings!!
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