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.
Monday, August 10, 2015
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!!
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