Let me start by saying that things have been going really well over here! Summer flew by and now we're back into the school routine.
Summer was busy, and I have a few posts to write to share it all with you, but first let me tell you about our trip to Toronto.
October 9th was the day of Noah's appointment at Toronto Sick Kid's for a second opinion.
This appointment came about after speaking to Noah's surgeon here in London and asking her a few questions that she was not sure of the answer to, as well as her reluctance to perform another surgery on Noah after how difficult things were after the last surgery. It was also due to some poorly spoken words by Noah's urologist in London.
We've been waiting for this day for a few months, and after attending a Prune Belly Syndrome Conference in New Jersey this summer (that's for another post!), we were eager to hear what the doctors in Toronto had to say.
Appointments aren't typically fun, so we made sure that this one was special. We started the day by surprising Noah with a train ride to get there!
We walked from Union Station to the hospital, and without a stroller Noah got a little tired. Rob was with us and was able to give Noah a break!
It turned out to be a full day of waiting, but Noah was SO good! Toronto Sick Kid's is definitely a children's hospital and there was no shortage of things to do:
The Tim Hortons has a train that rides around a track on the ceiling. Noah was able to push the button to make to go and loved watching it.
After attending the Prune Belly Syndrome Conference and speaking with a paediatric urologist there, we were eager to hear what the specialists in Toronto had to say about Noah.
For Noah's bladder, we were looking for their thoughts on Noah getting something called a Mitrofanoff (http://www.aboutkidshealth.ca/en/healthaz/testsandtreatments/procedures/pages/mitrofanoff.aspx).
This is a catheter that could be placed in his abdomen, rather than his penis, to make it easier to change Noah and have him learn how to do this himself (especially helpful once he goes to school).
We were told that because we can do things so smoothly the way we currently are, that we should not consider doing this procedure. This is the best way to catheterize, and since we have also learned how to flush Noah's bladder out at the sign of infection, it really is the best way!
It was very encouraging to hear that we are doing things the best way. It was also encouraging to hear the doctors speak to us in the manner that they did. The same words, spoken in a different tone, come across completely different!
As far as Noah's ilieostomy goes...things are more complicated.
Noah's surgery to connect his bowels to his bum was unsuccessful and very difficult for all of us. There were many complications that took place and as a result Noah was given an ostomy again.
Because his entire bowel has never been used, we do not know how much function (to contract) it actually has. A piece of Noah's colon was also removed during his previous surgery, and that could also affect how his colon functions.
Noah's bum has also not been used and it has narrowed down over time, to the point that we are not sure how far up things have narrowed.
Noah lacks tummy muscle to aid in pushing things out.
The surgeon informed us that the only way to know if this surgery would be a success, is to try. Their recommendation is to consider doing this surgery (reconnecting Noah's colon so he would no longer have an ostomy bag) before he goes to school fulltime. This means in the next 1 1/2 years! Their reasoning for this was so that socially he would be the same as the other students in his class.
For us, this is not such a valid reason to consider such a serious surgery, especially one in which the outcome is so uncertain.
They did recommend a few tests that Noah should have to help understand just what is happening with his bowels and bum right now.
If things were unsuccessful, we were told what other options are available for Noah, but were told to be prepared that Noah may very well need a bag for the rest of his life. This was not completely surprising to us, but still a little painful to hear.
The doctors in Toronto were excellent! They are more than willing to see us again and if we wanted, to perform Noah's surgery down the road.
They did also say that out surgeon's willingness to obtain a second opinion speaks very well for her, and makes us love and trust her all the more! (Dr. B, you're the best!).
We are very thankful for this opportunity and trust that the LORD will show us how we should proceed and pray that He will continue to keep Noah healthy and strong.
Rob was quickly writing notes so we wouldn't forget what was said by one doctor before the next one came in - it was a lot to take in. Two sets of ears were definitely nice to have!
Noah is ready to go home!
'I lift up my eyes to the hills
From where does my help come from?
My help comes from the LORD,
who made heaven and earth.
Psalm 121:1
Summer was busy, and I have a few posts to write to share it all with you, but first let me tell you about our trip to Toronto.
October 9th was the day of Noah's appointment at Toronto Sick Kid's for a second opinion.
This appointment came about after speaking to Noah's surgeon here in London and asking her a few questions that she was not sure of the answer to, as well as her reluctance to perform another surgery on Noah after how difficult things were after the last surgery. It was also due to some poorly spoken words by Noah's urologist in London.
We've been waiting for this day for a few months, and after attending a Prune Belly Syndrome Conference in New Jersey this summer (that's for another post!), we were eager to hear what the doctors in Toronto had to say.
Appointments aren't typically fun, so we made sure that this one was special. We started the day by surprising Noah with a train ride to get there!
We walked from Union Station to the hospital, and without a stroller Noah got a little tired. Rob was with us and was able to give Noah a break!
It turned out to be a full day of waiting, but Noah was SO good! Toronto Sick Kid's is definitely a children's hospital and there was no shortage of things to do:
After attending the Prune Belly Syndrome Conference and speaking with a paediatric urologist there, we were eager to hear what the specialists in Toronto had to say about Noah.
For Noah's bladder, we were looking for their thoughts on Noah getting something called a Mitrofanoff (http://www.aboutkidshealth.ca/en/healthaz/testsandtreatments/procedures/pages/mitrofanoff.aspx).
This is a catheter that could be placed in his abdomen, rather than his penis, to make it easier to change Noah and have him learn how to do this himself (especially helpful once he goes to school).
We were told that because we can do things so smoothly the way we currently are, that we should not consider doing this procedure. This is the best way to catheterize, and since we have also learned how to flush Noah's bladder out at the sign of infection, it really is the best way!
It was very encouraging to hear that we are doing things the best way. It was also encouraging to hear the doctors speak to us in the manner that they did. The same words, spoken in a different tone, come across completely different!
As far as Noah's ilieostomy goes...things are more complicated.
Noah's surgery to connect his bowels to his bum was unsuccessful and very difficult for all of us. There were many complications that took place and as a result Noah was given an ostomy again.
Because his entire bowel has never been used, we do not know how much function (to contract) it actually has. A piece of Noah's colon was also removed during his previous surgery, and that could also affect how his colon functions.
Noah's bum has also not been used and it has narrowed down over time, to the point that we are not sure how far up things have narrowed.
Noah lacks tummy muscle to aid in pushing things out.
The surgeon informed us that the only way to know if this surgery would be a success, is to try. Their recommendation is to consider doing this surgery (reconnecting Noah's colon so he would no longer have an ostomy bag) before he goes to school fulltime. This means in the next 1 1/2 years! Their reasoning for this was so that socially he would be the same as the other students in his class.
For us, this is not such a valid reason to consider such a serious surgery, especially one in which the outcome is so uncertain.
They did recommend a few tests that Noah should have to help understand just what is happening with his bowels and bum right now.
If things were unsuccessful, we were told what other options are available for Noah, but were told to be prepared that Noah may very well need a bag for the rest of his life. This was not completely surprising to us, but still a little painful to hear.
The doctors in Toronto were excellent! They are more than willing to see us again and if we wanted, to perform Noah's surgery down the road.
They did also say that out surgeon's willingness to obtain a second opinion speaks very well for her, and makes us love and trust her all the more! (Dr. B, you're the best!).
We are very thankful for this opportunity and trust that the LORD will show us how we should proceed and pray that He will continue to keep Noah healthy and strong.
'I lift up my eyes to the hills
From where does my help come from?
My help comes from the LORD,
who made heaven and earth.
Psalm 121:1
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