Dr Stanley called us today to say that he does feel Broc needs vascular surgery BUT only when he is 5-6 years of age.We are so happy that he will have a break from surgeries.He does agree that the lack of blood flow will cause him problems later on in life and that we should not leave it alone.
He said that he will follow Brocs case via e-mails and phone calls.He said that Broc needs to have an ultra sound done of his legs and the pressure measured in his legs every 6 months.If the pressures get lower and lower in his right leg then he will have surgery before he is 5-6 years old.
Now if we can get through this weeks appointments and procedures we will be doing well.
Monday, January 31, 2011
Monday, January 24, 2011
Thrown another curve ball.
As many of you know Broc has been having a lot of leg pain and discomfort.At times we have had to give him meds to help with the pain.His ped ordered some ultra sounds on his legs to view his veins and arteries.His veins u/s was good but today he had the artery u/s which gave us some terrible news.
They discovered that he is missing part of his artery in his right leg and his body has formed many collaterals which are little veins like branches to do the work of the main artery.His pulse is very weak in his right leg,his pressure is also really low in that leg too.
His blood flow in that leg should be triphasic and it is monophasic which is not good either.It means that there is serious occlusion in that leg.This could cause him very serious problems later in life if it is not corrected.The ped only ordered the leg to be ultra sound so they are not sure how far the occlusion goes up , they said it could go all the way into is chest.He will either need a stent put in or a by pass surgery.We are being referred to a vascular surgeon asap.The ped said that this has been a chronic problem as there are many collaterals in his leg.
I sure need a flashlight cause it seems like there is no light at the end of our tunnel.
We will keep all updated as much as we can.Thanks again for the support and prayers.
They discovered that he is missing part of his artery in his right leg and his body has formed many collaterals which are little veins like branches to do the work of the main artery.His pulse is very weak in his right leg,his pressure is also really low in that leg too.
His blood flow in that leg should be triphasic and it is monophasic which is not good either.It means that there is serious occlusion in that leg.This could cause him very serious problems later in life if it is not corrected.The ped only ordered the leg to be ultra sound so they are not sure how far the occlusion goes up , they said it could go all the way into is chest.He will either need a stent put in or a by pass surgery.We are being referred to a vascular surgeon asap.The ped said that this has been a chronic problem as there are many collaterals in his leg.
I sure need a flashlight cause it seems like there is no light at the end of our tunnel.
We will keep all updated as much as we can.Thanks again for the support and prayers.
Friday, January 14, 2011
Great appointment.
Broc had an echo yesterday and a follow-up from his surgery.He had a great appointment.His number were still in the low end which is wonderful and all his repairs and scar look wonderful.If a scar can look wonderful.
On another note his ped called last night and said that he will be sending his x-ray reports to the endocrinology dept. at Riley Hospital for review.They will decide if they need to see Broc or not,instead of us driving down there for nothing. I am really happy that he has taken that approach as apposed to us driving there for nothing.
We will keep you updated as much as we can.Thank you again for all the prayers and support you have shown us.
On another note his ped called last night and said that he will be sending his x-ray reports to the endocrinology dept. at Riley Hospital for review.They will decide if they need to see Broc or not,instead of us driving down there for nothing. I am really happy that he has taken that approach as apposed to us driving there for nothing.
We will keep you updated as much as we can.Thank you again for all the prayers and support you have shown us.
Wednesday, January 12, 2011
Cancelled appointments
Due to a snow storm we had to cancel both of Broc's appointments today at Riley.I did e-mail the heart surgeon and he mailed me right back and answered all my questions.Broc is done with his Lasix and Iron medication. Broc is very happy with that as he hated the taste of the iron and didn't care much for the Lasix either. He is seeing the cardio dr in South Bend tom to have an echo done as he is still really out of breathe and tired after running around. If the echo is good then we know that his tiredness is a result of his lungs and he is not getting enough air into them.
I also spoke with the nurse for the Pulm. Dr and she said that we have to continue with the Pulmicort breathing treatment twice a day and we only have to use the xopenex if he gets sick.He is very pleased about that too.
He is still having a lot of leg pain so we are really concerned about that and hope that when we see the ortho dr at the end of the month he can shed some light on that for us.
I will update tom withe the results of the echo exam.
I also spoke with the nurse for the Pulm. Dr and she said that we have to continue with the Pulmicort breathing treatment twice a day and we only have to use the xopenex if he gets sick.He is very pleased about that too.
He is still having a lot of leg pain so we are really concerned about that and hope that when we see the ortho dr at the end of the month he can shed some light on that for us.
I will update tom withe the results of the echo exam.
Saturday, January 8, 2011
The Ortho Dr called back
The Ortho Dr called yesterday to say that his inflammation markers are all good.We are happy about that as that means he does not have inflammation in his legs that is causing him pain.So for now they think his pain is coming from the LLD.
The puzzling thing is that his ortho nor any of his partners have ever seen legs like Brocs.When they looked at the x-ray they were really dumb founded at his legs.
So we have called the Rheumatologist to let them know and they are wanting to do an MRI on his vessels as well as many blood tests to see what is going on.
We have also been told that we need to see a geneticist as the condition he has with his legs is very rare.
This week we are hoping to get a call from the Rheumatologist to know what there plan of action is.
We are scared as to what they might discover but we are also happy that finally we will find what has been causing him all these problems too.But we are not holding our breathes as we know that drs are imperfect and do not have all the answers.They have told us that his legs might be an isolated condition and not related to the rest of his health problems or it might be all connected.They do want to rule as many things out as possible.The are thinking that he may have a connective tissue disorder or something like that.
For now his ped has prescribed naproxen to manage his leg pain for the next 2 weeks until we see his rheumatologist.
The puzzling thing is that his ortho nor any of his partners have ever seen legs like Brocs.When they looked at the x-ray they were really dumb founded at his legs.
So we have called the Rheumatologist to let them know and they are wanting to do an MRI on his vessels as well as many blood tests to see what is going on.
We have also been told that we need to see a geneticist as the condition he has with his legs is very rare.
This week we are hoping to get a call from the Rheumatologist to know what there plan of action is.
We are scared as to what they might discover but we are also happy that finally we will find what has been causing him all these problems too.But we are not holding our breathes as we know that drs are imperfect and do not have all the answers.They have told us that his legs might be an isolated condition and not related to the rest of his health problems or it might be all connected.They do want to rule as many things out as possible.The are thinking that he may have a connective tissue disorder or something like that.
For now his ped has prescribed naproxen to manage his leg pain for the next 2 weeks until we see his rheumatologist.
Tuesday, January 4, 2011
Our yearly check-up at the ortho dr
Broc had his yearly check-up at the orthopedic surgeon today.Here we were thinking that he may need to have supports put in his shoes like his brother and mommy.But Broc being Broc threw us all a surprise when his x-rays popped up on the screen. I asked the dr shouldn't his leg bones all be the same length meaning that the top bones are the same length and same for the bottom ones.
Well he said yes normally.So Broc has a long bone on the right and a short bone on the left ( the top bone) and on the right a short bone and on the left a long bone (the bottom bones).
With them being like that his legs are evening themselves out when you look at them so no-one new what they looked like until they saw his x-ray.
Poor guy has been complaining of pain from his hips down and no-one can tell us why.Well there is our answer.Many of the drs thought it was related to when he had a fever but he also had pain when he didn't have any fevers.
So no more jumping off tables and chairs or beds for him.Walking long distances and running long distances can cause him pain too.
He went for leg length bone x-rays today.He was so good during everything.They also took an x-ray of his left hand to measure the growth plate.
He also had blood work done on his inflammation levels to make sure they are normal.
The dr will call us in a week or 2 and let us know how severe this is and what our long term outlook is.He said that we will have to come every 6 months for bone x-rays to check the growth of his bones.
Broc was diagnosed with Leg Length Discrepancy,really as if he needs another diagnosis to add to his name.
Our next adventure is on 12 Jan for a visit with the heart surgeon and pulmanologist.
Well he said yes normally.So Broc has a long bone on the right and a short bone on the left ( the top bone) and on the right a short bone and on the left a long bone (the bottom bones).
With them being like that his legs are evening themselves out when you look at them so no-one new what they looked like until they saw his x-ray.
Poor guy has been complaining of pain from his hips down and no-one can tell us why.Well there is our answer.Many of the drs thought it was related to when he had a fever but he also had pain when he didn't have any fevers.
So no more jumping off tables and chairs or beds for him.Walking long distances and running long distances can cause him pain too.
He went for leg length bone x-rays today.He was so good during everything.They also took an x-ray of his left hand to measure the growth plate.
He also had blood work done on his inflammation levels to make sure they are normal.
The dr will call us in a week or 2 and let us know how severe this is and what our long term outlook is.He said that we will have to come every 6 months for bone x-rays to check the growth of his bones.
Broc was diagnosed with Leg Length Discrepancy,really as if he needs another diagnosis to add to his name.
Our next adventure is on 12 Jan for a visit with the heart surgeon and pulmanologist.
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