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!!!
Friday, June 28, 2013
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!!
Saturday, June 15, 2013
packing and planning
So We finally got a date for Sick kids, not that it was that long a wait but still makes you feel better knowing when things will happen.
Thursday morning I started calling sick kids, the number I was left, at 8am. I left a message with my cell number and waited, called back no answer, waited, called back no answer, waited......... a total of 10 time left another message and then finally at 945 did they finally call me back. Like come on, if your phones are open at 8am you should be there to answer them! I realize they are busy, as any hospital would be but still!!
Any way she finally tried to give me an appointment for April 27th and when I said well I thought that this was an urgent matter and that is 2 weeks away. She then stopped and said well give me a minute to find the original referral, and when she finally came back the referral was for the next available urologist. The next date that came up was the 19th much better. She then had to book times for ultrasound and the consultation appointment, and I asked about a ct scan as I know we are to be having one of them as well. So when she was booking for the ultrasound and the consultation she asked the nurse practitioner that worked with her about the CT scan. I got a call about half an hour later with times and reasoning for not being booked for a ct scan there. This reason what on the referral it had said CT was pending, so because Dr Haidar, who we seen in Sault Ste. Marie, was sending off for urgent CT scan there he put pending on the referral, so needless to say still waiting for a date for any kind of CT but was told that they would book a CT at sick kids when we are there, and hopefully it will be WHEN we are there!!
The relief and elation I felt from just getting this appointment was like I had just won the lottery, the best feeling in the world, especially when you consider that I was crying with frustration just before, my phone actually rang!
So I let the last day and half at work just trying to settle my nerves, also got an over time shift to help with the time I'm losing on Monday and Tuesday!!
When I got home last night and after the boys were in bed, I got a list of hotels that were close to sick kids and started calling to get rates and book a room. I had success considering. one hotel was priced at $220-$350 a night and still tried to book me, I'm like are you kidding me that is way too expensive for my blood!! A different hotel we offer the medical rate only when our hotel is less then 80% occupied and we are not and the rate for a room is $250 a night, um I don't think so but thanks any way. I then called back to the first hotel I called that was the Delta Chelsea, and was able to use their medical rate and got a room for $154 a night, I can't complain especially when we want down town Toronto. The only thing is you pay for parking but because of the medical rate it is discounted to $14 a night!! ok that works, book it!! So now I have a place to sleep in Toronto!!
Now to pack, clean so I'm not missing out when I'm gone, try and have fun!! and so on!! Have to pick up a travel grant on Monday then travel to Dads on the island!! And from there off to Toronto and maybe a few more answers!! I really hope so, not know what this thing is, is what is really getting to me, but I'm hopeful.
Nicholas hasn't complained of any pain the last couple days so I'm glad, knowing that he is not hurting also eases my mind, its hard knowing your child is in pain not being able to do anything about it!!
I'll post again soon!!!
Thursday morning I started calling sick kids, the number I was left, at 8am. I left a message with my cell number and waited, called back no answer, waited, called back no answer, waited......... a total of 10 time left another message and then finally at 945 did they finally call me back. Like come on, if your phones are open at 8am you should be there to answer them! I realize they are busy, as any hospital would be but still!!
Any way she finally tried to give me an appointment for April 27th and when I said well I thought that this was an urgent matter and that is 2 weeks away. She then stopped and said well give me a minute to find the original referral, and when she finally came back the referral was for the next available urologist. The next date that came up was the 19th much better. She then had to book times for ultrasound and the consultation appointment, and I asked about a ct scan as I know we are to be having one of them as well. So when she was booking for the ultrasound and the consultation she asked the nurse practitioner that worked with her about the CT scan. I got a call about half an hour later with times and reasoning for not being booked for a ct scan there. This reason what on the referral it had said CT was pending, so because Dr Haidar, who we seen in Sault Ste. Marie, was sending off for urgent CT scan there he put pending on the referral, so needless to say still waiting for a date for any kind of CT but was told that they would book a CT at sick kids when we are there, and hopefully it will be WHEN we are there!!
The relief and elation I felt from just getting this appointment was like I had just won the lottery, the best feeling in the world, especially when you consider that I was crying with frustration just before, my phone actually rang!
So I let the last day and half at work just trying to settle my nerves, also got an over time shift to help with the time I'm losing on Monday and Tuesday!!
When I got home last night and after the boys were in bed, I got a list of hotels that were close to sick kids and started calling to get rates and book a room. I had success considering. one hotel was priced at $220-$350 a night and still tried to book me, I'm like are you kidding me that is way too expensive for my blood!! A different hotel we offer the medical rate only when our hotel is less then 80% occupied and we are not and the rate for a room is $250 a night, um I don't think so but thanks any way. I then called back to the first hotel I called that was the Delta Chelsea, and was able to use their medical rate and got a room for $154 a night, I can't complain especially when we want down town Toronto. The only thing is you pay for parking but because of the medical rate it is discounted to $14 a night!! ok that works, book it!! So now I have a place to sleep in Toronto!!
Now to pack, clean so I'm not missing out when I'm gone, try and have fun!! and so on!! Have to pick up a travel grant on Monday then travel to Dads on the island!! And from there off to Toronto and maybe a few more answers!! I really hope so, not know what this thing is, is what is really getting to me, but I'm hopeful.
Nicholas hasn't complained of any pain the last couple days so I'm glad, knowing that he is not hurting also eases my mind, its hard knowing your child is in pain not being able to do anything about it!!
I'll post again soon!!!
Wednesday, June 12, 2013
Over whelming
We got news today!!
Sick kids called today and wanted us to be there tomorrow, but because we were working we missed the call and when we tried to call back they were closed. Of course not everyone works 12 hour days right!! lol but still.
I have a sneaking suspicion that most people from southern Ontario have no idea where we are in northern Ontario and how long it actually takes to get there!!
And well the kindness that I am getting from some really great women in my life is endless!! and hear warming and tear jerking and just end less words to describe what I felt when I got that message!! Lets just say it doesn't take much for me to cry these days and I was sobbing when I found out what they are doing for my family! (and guess what tears filled my eyes again!!!)
Tonight when I got home from work I got this notion, my great grandmother had a kidney removed a long time ago and lived into her 90's so why can't Nicholas do the same, but in the same breath I was thinking OMG Why did she have it removed, maybe it is genetic so I'm trying to find that out but my aunts don't recall why she had it out but also don't recall anything like cancer being said at the same time so if it is relate I'm hopeful. Even if its not still hoping not to hear the "c" word!!
Well that's it for now time for bed!!
Sick kids called today and wanted us to be there tomorrow, but because we were working we missed the call and when we tried to call back they were closed. Of course not everyone works 12 hour days right!! lol but still.
I have a sneaking suspicion that most people from southern Ontario have no idea where we are in northern Ontario and how long it actually takes to get there!!
And well the kindness that I am getting from some really great women in my life is endless!! and hear warming and tear jerking and just end less words to describe what I felt when I got that message!! Lets just say it doesn't take much for me to cry these days and I was sobbing when I found out what they are doing for my family! (and guess what tears filled my eyes again!!!)
Tonight when I got home from work I got this notion, my great grandmother had a kidney removed a long time ago and lived into her 90's so why can't Nicholas do the same, but in the same breath I was thinking OMG Why did she have it removed, maybe it is genetic so I'm trying to find that out but my aunts don't recall why she had it out but also don't recall anything like cancer being said at the same time so if it is relate I'm hopeful. Even if its not still hoping not to hear the "c" word!!
Well that's it for now time for bed!!
Tuesday, June 11, 2013
New Diagnosis, Kidney Tumor
This is scary for me!! Being a nurse and knowing that tumor often means cancer, I'm worried and upset and just want to cry!!
He is so oblivious to what is about to happen to him I keep thinking that this better be it for my little family now!!
Nicholas's first appointment is with the urologist on Monday June 10, 2013. So my next thought is work and more to the point day care and so on, just for my schedule, being very busy!
We did see this urologist and Dr Haidar nice man needs a little more personality for my liking, when it comes to kids, but can't complain.
He wants Nicholas to have a CT scan to look at the tumor but did say that if the radiologist thinks that an MRI would be better that, that is what he will have. Nick will need sedation being 2 1/2 he won't lay still. So when that comes back we will know if this is likely to be cancer or not. But either way this doctor thinks that the tumor needs to come out and I have to agree with the tumor being about 7cm at the longest point.
So in saying this, this type of surgery cannot be done in the Sault, so another trip to Sick kids this summer. And here I am so Happy that we don't have to go back until next April or may. Oh well best place in Canada for him I think, this is what they do!! Kids!!
Nicholas doesn't seem to be having many problems from this but he does come up to me occasionally saying that he is having pain, in various places but generally around where his kidney is, whether he has pain in his back, side or belly its always on the left side where is points. so Advil or Tylenol when he complains until it doesn't work anymore or the thing comes out!!
I'll write when I have dates for anything and whenever I'm feeling blue, kinda like when I wrote for Lucas. but my thoughts right now is why couldn't we have had enough of this type of shit. I feel like yelling at someone so hard I cant talk anymore. In fact I told God last night he couldn't have him back!! He gave him to me after a long struggle and he couldn't have him back yet. It is way too soon. I love my little Guy as much as my big one and I wouldn't let him go either.!!
So until next time!!
HE IS MINE, SORRY BUT YOU CAN'T HAVE HIM. AND MOM YOU CAN WAIT TO HOLD HIM. I STILL NEED HIM IN MY LIFE!!
He is so oblivious to what is about to happen to him I keep thinking that this better be it for my little family now!!
Nicholas's first appointment is with the urologist on Monday June 10, 2013. So my next thought is work and more to the point day care and so on, just for my schedule, being very busy!
We did see this urologist and Dr Haidar nice man needs a little more personality for my liking, when it comes to kids, but can't complain.
He wants Nicholas to have a CT scan to look at the tumor but did say that if the radiologist thinks that an MRI would be better that, that is what he will have. Nick will need sedation being 2 1/2 he won't lay still. So when that comes back we will know if this is likely to be cancer or not. But either way this doctor thinks that the tumor needs to come out and I have to agree with the tumor being about 7cm at the longest point.
So in saying this, this type of surgery cannot be done in the Sault, so another trip to Sick kids this summer. And here I am so Happy that we don't have to go back until next April or may. Oh well best place in Canada for him I think, this is what they do!! Kids!!
Nicholas doesn't seem to be having many problems from this but he does come up to me occasionally saying that he is having pain, in various places but generally around where his kidney is, whether he has pain in his back, side or belly its always on the left side where is points. so Advil or Tylenol when he complains until it doesn't work anymore or the thing comes out!!
I'll write when I have dates for anything and whenever I'm feeling blue, kinda like when I wrote for Lucas. but my thoughts right now is why couldn't we have had enough of this type of shit. I feel like yelling at someone so hard I cant talk anymore. In fact I told God last night he couldn't have him back!! He gave him to me after a long struggle and he couldn't have him back yet. It is way too soon. I love my little Guy as much as my big one and I wouldn't let him go either.!!
So until next time!!
HE IS MINE, SORRY BUT YOU CAN'T HAVE HIM. AND MOM YOU CAN WAIT TO HOLD HIM. I STILL NEED HIM IN MY LIFE!!
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