We went for a check up on Thursday in Regina. We had to get an ECG and ultrasound done. It all looks good. They are all impressed about how nice and clean his scar is. It will probably be 2 months or so until we have to do another ultrasound which may be in Saskatoon in order to get all the accurate pictures required. We just thought that may be a good time to take another family over night trip then and visit Fuddruckers if that happens.
Brody is such a little trooper. In the 4 and a half months that he has been with us he has been through so much. Not only has he gone through his gas spells, and the surgury he is now fighting the pain of cutting teeth. He is so strong that sometimes I feel like I pull on his strength to make it through. I was putting him to bed tonight and just watching him sleep and thought to myself I am not sure why God gave me such a special little guy but I wouldn't give him up for anything. He is such a ray of sunshine every morning and nothing beats those little dimples to make you smile :)
Sunday, 28 August 2011
Saturday, 20 August 2011
FINALLY HOME :)
Sorry for the late post... we have been running ever since we got released from the hospital so I will start back at Sunday.
We went in for a chest xray to ensure all was clear and it was so we got released on Sunday. What a feeling I think even Brody felt better getting outside. We found that Brody was a different kid. He didn't cry while we were driving around in his car seat and was happy just to be out. Then we all got to the airport to pick up my Mom and Caine it was a great day. We went for a walk on the seawall when we got back to the room. It was great.
On Monday we all went to the Aquarium. Caine loved it and his goal was to get through it quick to see everything quickly. Even Brody was a different kid. He didn't get upset with being in his car seat and just loved watching the fishes.
On Tuesday we went back for our follow up appointment. His chest XRays were clear and his oxygen stat levels were 94 so great results. They were happy and said we could go back to Regina and follow up with our cardiologist there. Caine actually liked hanging out at the children's hospital because there were alot of new toys to play with. We all went back that day and had 3 hour naps.
On Wednesday we just hung out. I took Caine to the park and Brody slept most of the day away. Poor little guy didn't get much sleep in the hospital so we didn't have the heart to wake him to take him out. Also on Wednesday night Jerry and his wife Andrea came to our place for supper. We loaded them down with our extra groceries that we didn't need anymore.
On Thursday we were excited as were were heading home. We decided to go to Science World in the morning as our flight did not leave until 6pm. What a waste of time and money. Although the dinosaur exhibit was cool the whole place was under construction and not much to do. We then had to make our way back to the Children's Hospital to get Brody's special formula as for some reason Saskatchewan couldn't figure out how to get it. What a gong show that is!!!!!! We finally got on our airplane and the pilot came on the intercom to tell us that there is a freak storm going through Calgary and they could not take off until they got clearance from Calgary. We had to sit on the plance on the tarmac at the gate for an hour before we even took off. A one hour flight took 3 hours. By the time we got to Calgary our connector flight had already left for Regina so we were stuck in Calgary for the night. They booked us in at the Delta at the airport (which is a very nice hotel and has very comfortable beds) and booked us on the early morning flight on Friday.
We got on our flight on Friday and finally arrived back in Regina at 9:30. It was a very long day as none of us got much sleep the night before.
Now we are working on trying to get everyone back on a schedule and routine. It is tough right now as Brody is completely messed up and for some reason his bad gas issues have just come back since we have returned home. Hopefully that is a phase and they will go away as I am not sure we can survive that again...2 hours of sleep a night.
We have our next appointment with the cardiologist on Thursday and I will update after that. For now here are some pics of or last week.
We went in for a chest xray to ensure all was clear and it was so we got released on Sunday. What a feeling I think even Brody felt better getting outside. We found that Brody was a different kid. He didn't cry while we were driving around in his car seat and was happy just to be out. Then we all got to the airport to pick up my Mom and Caine it was a great day. We went for a walk on the seawall when we got back to the room. It was great.
On Monday we all went to the Aquarium. Caine loved it and his goal was to get through it quick to see everything quickly. Even Brody was a different kid. He didn't get upset with being in his car seat and just loved watching the fishes.
On Tuesday we went back for our follow up appointment. His chest XRays were clear and his oxygen stat levels were 94 so great results. They were happy and said we could go back to Regina and follow up with our cardiologist there. Caine actually liked hanging out at the children's hospital because there were alot of new toys to play with. We all went back that day and had 3 hour naps.
On Wednesday we just hung out. I took Caine to the park and Brody slept most of the day away. Poor little guy didn't get much sleep in the hospital so we didn't have the heart to wake him to take him out. Also on Wednesday night Jerry and his wife Andrea came to our place for supper. We loaded them down with our extra groceries that we didn't need anymore.
On Thursday we were excited as were were heading home. We decided to go to Science World in the morning as our flight did not leave until 6pm. What a waste of time and money. Although the dinosaur exhibit was cool the whole place was under construction and not much to do. We then had to make our way back to the Children's Hospital to get Brody's special formula as for some reason Saskatchewan couldn't figure out how to get it. What a gong show that is!!!!!! We finally got on our airplane and the pilot came on the intercom to tell us that there is a freak storm going through Calgary and they could not take off until they got clearance from Calgary. We had to sit on the plance on the tarmac at the gate for an hour before we even took off. A one hour flight took 3 hours. By the time we got to Calgary our connector flight had already left for Regina so we were stuck in Calgary for the night. They booked us in at the Delta at the airport (which is a very nice hotel and has very comfortable beds) and booked us on the early morning flight on Friday.
We got on our flight on Friday and finally arrived back in Regina at 9:30. It was a very long day as none of us got much sleep the night before.
Now we are working on trying to get everyone back on a schedule and routine. It is tough right now as Brody is completely messed up and for some reason his bad gas issues have just come back since we have returned home. Hopefully that is a phase and they will go away as I am not sure we can survive that again...2 hours of sleep a night.
We have our next appointment with the cardiologist on Thursday and I will update after that. For now here are some pics of or last week.
Sunday, 14 August 2011
DAY SIX....We are getting out :)
The day has finally come that Brody is well enough to be released. We talked to the doctor this morning and he feels that Brody is good to leave. We had to go for a chest X-Ray first to ensure there is no fluid build up around his lungs or heart. Once they have a look at those (and they are anticipating no issues) we will be released.
What a long road in such a short period of time. Brody has gone from being on a ventilator to being back to his normal self in 5 short days it is amazing... the Surgerion, Dr. Ghandi, is fabulous and has taken great care of him since we have been there. We have a bit of comfort knowing that when we come back Brody will be in great hands.
We are sticking around Vancouver for a few days to enjoy some sites with Caine and my Mom and are heading back on Thursday night. Can't wait to get home and back into our normal routine again.
What a long road in such a short period of time. Brody has gone from being on a ventilator to being back to his normal self in 5 short days it is amazing... the Surgerion, Dr. Ghandi, is fabulous and has taken great care of him since we have been there. We have a bit of comfort knowing that when we come back Brody will be in great hands.
We are sticking around Vancouver for a few days to enjoy some sites with Caine and my Mom and are heading back on Thursday night. Can't wait to get home and back into our normal routine again.
Saturday, 13 August 2011
DAY FIVE...AT LEAST I THINK IT IS
I can't believe it has been 5 days since Brody's surgery. The time just kind of balls up into one big day when you are in here. You never really realize the time or even understand the dates while you are here... wierd feeling.
Brody is doing very good today he is just really tired. Hospitals are definately not the place to get rest. Last night they didn't bother him as much so he got pockets of sleep but still a bit unsettled. This morning they removed his final tube...and this upset Brody alot but he is much happier how as there is nothing left to cause him any discomfort. They only have little stickers on him which are monitoring his heartrate and breaths per min. What a long way he has come in a VERY short period of time. He is such a strong little guy.
Last night he was actually watching the Rider game and talking to the TV like they sucked (which they did). He is smiling and kicking and playing today almost back to his old self. We should be out tomorrow if all looks good with his chest xray tomorrow. Then we hang out here until our appointment on Thursday morning and then we are heading out Thursday night. We can 't wait to get home to our life.
Caine and my Mom are coming to Vancouver tomorrow so it will be great to see the little man and hang out as a family. We miss Caine greatly. Leaving him was almost as painful as letting go of Brody for surgery. I now see what they mean by kids are your life :) We love our boys to pieces and would have it no other way.
I thought I would share a picture of Brody today vs 5 days ago. I hope this brings a smile to everyone's face like it does to ours.
Hopefully our post tomorrow will be that we are being released....
Brody is doing very good today he is just really tired. Hospitals are definately not the place to get rest. Last night they didn't bother him as much so he got pockets of sleep but still a bit unsettled. This morning they removed his final tube...and this upset Brody alot but he is much happier how as there is nothing left to cause him any discomfort. They only have little stickers on him which are monitoring his heartrate and breaths per min. What a long way he has come in a VERY short period of time. He is such a strong little guy.
Last night he was actually watching the Rider game and talking to the TV like they sucked (which they did). He is smiling and kicking and playing today almost back to his old self. We should be out tomorrow if all looks good with his chest xray tomorrow. Then we hang out here until our appointment on Thursday morning and then we are heading out Thursday night. We can 't wait to get home to our life.
Caine and my Mom are coming to Vancouver tomorrow so it will be great to see the little man and hang out as a family. We miss Caine greatly. Leaving him was almost as painful as letting go of Brody for surgery. I now see what they mean by kids are your life :) We love our boys to pieces and would have it no other way.
I thought I would share a picture of Brody today vs 5 days ago. I hope this brings a smile to everyone's face like it does to ours.
Friday, 12 August 2011
DAY FOUR....
Brody was better yesterday just really uncomfortable. He would have had a great sleep if the nurses weren't coming in every two hours to check his vitals. So we would get an hour or two of sleep then they would wake us up. It sucked. You could even see it in Brody's face...like Mom why aren't they letting me sleep.
This morning he got out one of his two drain tubes. Hopefully the other one will be out by the end of the weekend and we can get the heck out of the hospital on Monday. We will still have to stay in Vancouver for a few days to come back and have Brody checked out but my Mom will be bring Caine to Vancouver and we can have a small holiday.
It is getting better just REALLY rough to see him struggle and be limited to what we can do for him.
This morning he got out one of his two drain tubes. Hopefully the other one will be out by the end of the weekend and we can get the heck out of the hospital on Monday. We will still have to stay in Vancouver for a few days to come back and have Brody checked out but my Mom will be bring Caine to Vancouver and we can have a small holiday.
It is getting better just REALLY rough to see him struggle and be limited to what we can do for him.
Thursday, 11 August 2011
DAY THREE....
What a day yesterday. Brody was in excrusiating pain yesterday. It was the hardest thing to be around as there is absolutely nothing you can do for him other than sit there rub his head and tell him everything will be ok (when in the back of your head you can only imagine what he is going through). We can't even imagine having to go through this again but at least we have a few years before we have to do so.
With this procedure he gets "headaches" which they compare to major migraines. Needless to say he had those and was not happy yesterday. We could not console him in anyway..ie even holding him upset him. So we talked to the doctors and they put him back on his "happy juice" pain killers and he was a much happier fella. Also, there is a side effect to this operation where the lymph nodes may leak fat as the body is trying to get used to the new blood flow and they don't know what to do. So he got that side effect they have changed him to Monogen formula, which is low fat, to help drain all the fat from his lungs and get his body working. He only needs to be on it for a few weeks to clear his system then we can go back to normal formula. Last night, he kept fussing and mussing with gas pains so they had to give him a glicerine tip to relieve his gas. Once they did this he has a big "fart fest" and poop and slept from 10 - 5 this morning. We were so happy to hear that...
He will be transferred up to 3M today (the cardiac ward). It will be quieter and hopefully he can get some rest. We are a bit scared as we do not know what he will be like without his meds but we can't stay in the PICU forever (even though we would love to).
Once we get to our new room we will post a picture as it is amazing how far he has come from day one as the tubes keep disappearing as the days go on.
Here is the picture as promised...only the drain tubes are left :)
With this procedure he gets "headaches" which they compare to major migraines. Needless to say he had those and was not happy yesterday. We could not console him in anyway..ie even holding him upset him. So we talked to the doctors and they put him back on his "happy juice" pain killers and he was a much happier fella. Also, there is a side effect to this operation where the lymph nodes may leak fat as the body is trying to get used to the new blood flow and they don't know what to do. So he got that side effect they have changed him to Monogen formula, which is low fat, to help drain all the fat from his lungs and get his body working. He only needs to be on it for a few weeks to clear his system then we can go back to normal formula. Last night, he kept fussing and mussing with gas pains so they had to give him a glicerine tip to relieve his gas. Once they did this he has a big "fart fest" and poop and slept from 10 - 5 this morning. We were so happy to hear that...
He will be transferred up to 3M today (the cardiac ward). It will be quieter and hopefully he can get some rest. We are a bit scared as we do not know what he will be like without his meds but we can't stay in the PICU forever (even though we would love to).
Once we get to our new room we will post a picture as it is amazing how far he has come from day one as the tubes keep disappearing as the days go on.
Here is the picture as promised...only the drain tubes are left :)
Wednesday, 10 August 2011
The Day After
Its amazing how quickly Brody has started his recovery. By the picture below you can see he's more comfortable and progressing well.
Jamie is much happier too. :)
Jamie is much happier too. :)
Op day
Surgery was only 3 hrs, but, Brody was having difficulty getting off the ventilator afterwards so we didnt get into the Peditaric ICU (PICU) until 1:30pm. Once we got into the PICU it was hard to see Brody hooked up to all of the lines and machines after surgery. The staff was very supportive and reassured us as they provided care to Brody. Each patient has one assigned nurse to watch over them 24/7 which is a big part of the reason we came back to Vancouver.
For most of the day it felt as though we were living in the "Twilight Zone". By 10pm we had left the hospital to get some rest at home.
The pic below is Brody right after surgery. He was puffy and Blue in the face. The "Glenn" surgery rerouted blood throughout his body so headaches are severe for the first few days. The nurses medicate him for pain control and they'll get significantly less severe over the coming days.
Monday, 8 August 2011
Pre-Opp Day......what a long day
Well, we went through pre opp today and it was a very long day. We were there at 8:30 this morning until 3:30 this afternoon. We met every single person you could possibly imagine ; including their pets :). Thankfully Brody slept very well last night but today wore him out and he is exhausted....he's already in bed and it's only 7pm local time.
The long and short of todays conversations were that his heart anatomy, which was complicated in the first place, has gotten even more complicated. It isn't an easy fix. The doctors and surgeons are saying right now they can't fix the current problem with one surgery as his heart has developed in such a way that he will need 2 surgeries to get him back to "normal". HOWEVER the surgeon can make his life easier by doing what they refer to as "The Glenn Surgery" which will make him "pink" vs staying "blue".
Here is someone elses blog about the same thing and it has a great picture of what surgery etc. will look like. http://www.severinbrenny.com/bidirectional_glenn_operation.html
This type of surgery will give Brody at least 2 more years before he needs surgery #2. The doctors arent sure which procedure they'll do at this point until they see what his heart looks like. They could chose the corrective surgery to replair his "DORV" condition or they could chose the Fontan surgury. Kids have hearts that keep growing until they are about 2 years old, so, his complicated heart could grow to be more complicated or easier to fix but we won't know until that date.
With all this being said, Wade and I are doing OK. We have our moments but we are trying to stay strong. Tomorrow will be THE HARDEST day of our lives...having to hand over our little guy to be cut open for surgery. At the same time we know it needs to be done and the doctors will do what is best for Brody.
Surgery is at 7:30am tomorrow. If Brody has "the Glenn Surgery" he will be in the OR for 3 hours and if they do the big surgery it would likely be 5 hours. We will post the results sometime tomorrow but keep up good thoughts and lots of prayers for Brody.
The long and short of todays conversations were that his heart anatomy, which was complicated in the first place, has gotten even more complicated. It isn't an easy fix. The doctors and surgeons are saying right now they can't fix the current problem with one surgery as his heart has developed in such a way that he will need 2 surgeries to get him back to "normal". HOWEVER the surgeon can make his life easier by doing what they refer to as "The Glenn Surgery" which will make him "pink" vs staying "blue".
Here is someone elses blog about the same thing and it has a great picture of what surgery etc. will look like. http://www.severinbrenny.com/bidirectional_glenn_operation.html
This type of surgery will give Brody at least 2 more years before he needs surgery #2. The doctors arent sure which procedure they'll do at this point until they see what his heart looks like. They could chose the corrective surgery to replair his "DORV" condition or they could chose the Fontan surgury. Kids have hearts that keep growing until they are about 2 years old, so, his complicated heart could grow to be more complicated or easier to fix but we won't know until that date.
With all this being said, Wade and I are doing OK. We have our moments but we are trying to stay strong. Tomorrow will be THE HARDEST day of our lives...having to hand over our little guy to be cut open for surgery. At the same time we know it needs to be done and the doctors will do what is best for Brody.
Surgery is at 7:30am tomorrow. If Brody has "the Glenn Surgery" he will be in the OR for 3 hours and if they do the big surgery it would likely be 5 hours. We will post the results sometime tomorrow but keep up good thoughts and lots of prayers for Brody.
Thursday, 4 August 2011
THE DATES HAVE CHANGED!!!!
We are no longer set to be leaving in September. We received a call today that we are jumping on a plane on Sunday for pre opp on Monday and surgury on Tuesday. I can't believe it. Things are absolutely frantic here. I will post again on Sunday...
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