It has been 2 years now since Brody had his first open heart surgery, which was August 8 but I am really slow at updating the blog. We celebrated by getting Blizzards from Dairy Queen to support their Miracle Foundation Day!!!
We were also in Saskatoon on August 7 to get his follow up for his tubes in his ears. The one ear is at a passing level but the other ear is not. So we have to go get him checked out in about a month again to see if it passes. The Doctor wasn't too worried that it won't be he wants both to pass before he let's it go. The funny part is the doctor asked if he was sleeping better and I thought about it and he is. He is sleeping through most nights and it is due to the tubes being put in his ears. I cannot believe the doctor in Regina wasn't going to put tubes in as he has become a much happier kid since. He talks more, interacts more with others and is just generally more happy. I am glad I asked and Marie made it happen :)
Tuesday, 13 August 2013
Monday, 29 July 2013
AWESOME CHECKUP!!!!!!
Brody went in for a cardio checkup which was to happen about 2 months post his heart cath. We received FABULOUS NEWS........
Brody is doing so well they don't see a forseeable surgery in his near future. With most kids with the Glenn surgery they require the Fontan surgery around this age as they are not getting the enzymes from the liver to the lungs. However since he has a pulmonary valve with stenosis still working in his heart it is pushing enough of the enzyme from his liver to his lungs that he is completely healthy without any additional surgery at this time. His oxygen levels are still at 92 and they said if they did the Fontan at this time those levels would go down so why would they.
They are still thinking a bi-ventricle repair is in his future, where they can repair his heart to make it a four chamber heart and put in a new pulmonary valve (which would have to be replaced as he grows older but with science the way it is maybe by that time he wont need open heart surgery just something laproscopic)
We are SSOOO HAPPY!!! We can just go on living until he tells us he is ready and that would be anywhere from a year to 5 years.
Brody is doing so well they don't see a forseeable surgery in his near future. With most kids with the Glenn surgery they require the Fontan surgery around this age as they are not getting the enzymes from the liver to the lungs. However since he has a pulmonary valve with stenosis still working in his heart it is pushing enough of the enzyme from his liver to his lungs that he is completely healthy without any additional surgery at this time. His oxygen levels are still at 92 and they said if they did the Fontan at this time those levels would go down so why would they.
They are still thinking a bi-ventricle repair is in his future, where they can repair his heart to make it a four chamber heart and put in a new pulmonary valve (which would have to be replaced as he grows older but with science the way it is maybe by that time he wont need open heart surgery just something laproscopic)
We are SSOOO HAPPY!!! We can just go on living until he tells us he is ready and that would be anywhere from a year to 5 years.
Monday, 24 June 2013
FEVER RUNS HIGH!!!
June 20, 2013
Brody had to be taken to the ER for an extremely high fever. He was extremely sweaty. Wade was very smart and called the Cardiologists office in Saskatoon to tell them what was going on. As luck would have it Dr. Pharis was in Regina doing a clinic here so took great care to assist in educating the ER doctor on his condition and giving suggestions on his care. They did every test possible to see what was going on with him..good news is that all his chest XRays and Ultrasounds looked good so his heart was ok. They continued to fight his fever with advil and tylenol and his fever finally broke at 2am on Friday morning. We got to go home later in the afternoon.
He was very tired on Friday and then Saturday he was active and moving around like nothing happened. We have not heard on the test results yet but I am sure interested as to what caused his fever.
Dr. Pharis actually called on Sunday to see how things were going with Brody. Now that is what I call GREAT care. We have a great pediatric cardiology team here in Saskatchewan. Even though we never wanted to know them, we can't think of a better local team to have for support and care for our little man.
SIDE NOTE: Wade took him to the ER as I was on route back from Raleigh, NC. Talk about feeling utterly and completely helpless as it is engrained in us as Mom's that we need to be there for our sick children. Wade is a fantastic Dad and took care of him and even spent the night as he knew all the information from the day so it made sense.
Brody had to be taken to the ER for an extremely high fever. He was extremely sweaty. Wade was very smart and called the Cardiologists office in Saskatoon to tell them what was going on. As luck would have it Dr. Pharis was in Regina doing a clinic here so took great care to assist in educating the ER doctor on his condition and giving suggestions on his care. They did every test possible to see what was going on with him..good news is that all his chest XRays and Ultrasounds looked good so his heart was ok. They continued to fight his fever with advil and tylenol and his fever finally broke at 2am on Friday morning. We got to go home later in the afternoon.
He was very tired on Friday and then Saturday he was active and moving around like nothing happened. We have not heard on the test results yet but I am sure interested as to what caused his fever.
Dr. Pharis actually called on Sunday to see how things were going with Brody. Now that is what I call GREAT care. We have a great pediatric cardiology team here in Saskatchewan. Even though we never wanted to know them, we can't think of a better local team to have for support and care for our little man.
SIDE NOTE: Wade took him to the ER as I was on route back from Raleigh, NC. Talk about feeling utterly and completely helpless as it is engrained in us as Mom's that we need to be there for our sick children. Wade is a fantastic Dad and took care of him and even spent the night as he knew all the information from the day so it made sense.
HEART CATHERIZATION DAY!!!
May 31, 2013
I always dreaded the day I would have to hand my little man over again for people to poke and prod him. My biggest fear of all was them figuring out what his heart now looks like to start planning surgery #2. Wade and I got to go into the OR with him this time. They tried distracting him with the CARS movie but he knew better and before we knew it he was running down the hallway to get the heck out of there. We got to stay while they put him under..I just wanted to break down and cry but I knew I had to be strong for Brody's sake. I am of no use to him if I am a mess.
Also thanks to the help of Marie, our pediatric nurse in Saskatoon, we arranged to get tubes put in Brody's ears at the same time as he just kept getting ear infections. Glad we did as Dr. Shoman said he did have fluid build up in his ears. He is doing well with them and his speak has picked up alot since we did it.
So what are the results of the heart cath you ask.......
He looks fabulous. When he was under his stats went up to 99% and they were wondering why he was on the table. His left ventricle grew to the same size of his right ventricle and all his other organs look like a normal kid. So what does this mean??? They have three different options for repair... the Fontan, which is the easiest surgery, bi ventrical repair (where they can repair his heart to which it would become a 4 ventricle heart (almost normal) and a third surgery I can't remember the name of.... They are going to take his case to the Western Canadian Heart Board to discuss so they pick the right surgery as they are not in a big rush. This is good news as they will make the right choice for Brody for what will give him the best quality of life.
The only thing that still sucks is the waiting game. We still do not know when we are headed in for surgery but we are anticipating sometime in the fall time frame (hopefully well before Christmas). Stay tuned!!!
I always dreaded the day I would have to hand my little man over again for people to poke and prod him. My biggest fear of all was them figuring out what his heart now looks like to start planning surgery #2. Wade and I got to go into the OR with him this time. They tried distracting him with the CARS movie but he knew better and before we knew it he was running down the hallway to get the heck out of there. We got to stay while they put him under..I just wanted to break down and cry but I knew I had to be strong for Brody's sake. I am of no use to him if I am a mess.
Also thanks to the help of Marie, our pediatric nurse in Saskatoon, we arranged to get tubes put in Brody's ears at the same time as he just kept getting ear infections. Glad we did as Dr. Shoman said he did have fluid build up in his ears. He is doing well with them and his speak has picked up alot since we did it.
So what are the results of the heart cath you ask.......
He looks fabulous. When he was under his stats went up to 99% and they were wondering why he was on the table. His left ventricle grew to the same size of his right ventricle and all his other organs look like a normal kid. So what does this mean??? They have three different options for repair... the Fontan, which is the easiest surgery, bi ventrical repair (where they can repair his heart to which it would become a 4 ventricle heart (almost normal) and a third surgery I can't remember the name of.... They are going to take his case to the Western Canadian Heart Board to discuss so they pick the right surgery as they are not in a big rush. This is good news as they will make the right choice for Brody for what will give him the best quality of life.
The only thing that still sucks is the waiting game. We still do not know when we are headed in for surgery but we are anticipating sometime in the fall time frame (hopefully well before Christmas). Stay tuned!!!
Happy 2nd Birthday Brody!!!!
I can't believe Brody is 2 years old and strong as an ox. To be honest when I found out that he was going to be born with a CHD I thought the worst. I thought he would be pale and frail but he is the complete opposite. He is strong and happy and enjoys wrestling with his big brother and running after him. He is also starting to enjoy movies but HAS to watch ELF and PeeWee's Big Adventure Over and Over again... that isn't always enjoyable. I thought I would share some pics from his birthday party below.
Also posted are some 2 year old pics of him and his brother Caine. They love eachother so much and this is so hard on Caine but he is a trooper and is there for Brody at all times. I really want to give credit where credit is due here... Krista Fowler of Drawn Daisy Photography took these pictures. She is great with them and they love her...
Also posted are some 2 year old pics of him and his brother Caine. They love eachother so much and this is so hard on Caine but he is a trooper and is there for Brody at all times. I really want to give credit where credit is due here... Krista Fowler of Drawn Daisy Photography took these pictures. She is great with them and they love her...
Halloween and Christmas 2012....
Well it has been just about a year since I have posted anything about Brody... I am the worst blogger ever no wondering I don't have many followers. From August up until Christmas Brody has been doing very well. He finally started walking and now we can't slow him down. He just loves running after Caine and other kids but tires so easily. I feel so bad for him as he wants to do things like the other kids so bad...but he loves his own things as well...loves playing cars and watching movies..so not very ambitious things but his things :) He always loves to help me bake cookies as well (loves eating them the most)...
Halloween was a blast with Brody and Caine this year. Brody wasn't overly excited about getting dressed up until he went to the first house and they gave him candy. He thought that was pretty awesome.
Christmas was awesome as well. Brody loved ripping off the wrapping paper and then playing with the boxes after...not too much interest in the toys but boy was ripping paper and throwing boxes around fun.
Halloween was a blast with Brody and Caine this year. Brody wasn't overly excited about getting dressed up until he went to the first house and they gave him candy. He thought that was pretty awesome.
Christmas was awesome as well. Brody loved ripping off the wrapping paper and then playing with the boxes after...not too much interest in the toys but boy was ripping paper and throwing boxes around fun.
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