Finally home...and to a great surprise

We had a good check up this morning with Brody.   If it wasn't for his irregular heart beat he would have been the perfect fontan.   We are still hoping and praying that his heart gets back to normal but only time will tell. I really don't feel.like going back to Vancouver.

Brody and I had an awful time getting home (Wade was lucky and got on the direct flight).  We left Vancouver fine and on time and even. Loaded the plane in Calgary on time. ..then we were asked to get off due to electrical issues.  3 hours later we left and landed at 10 pm...Brody is exhausted.

We got home and to my surprise Caine was still up...I was so happy to see his smiling face.  The I walked inside....

WE HAVE THE BEST FRIENDS EVER!!!!!!  Not only did they decorate but loaded our freezer with food.   Paula and Jay, Steph, Debbie and Brad, Dana, Kathy and Shawn, Linda and Joe, Phil and Scarlett Thank you so much means to world to us.  We couldn't ask for better friends.   We can't wait to see you all soon too I missed you guys!!!!!!!

Sorry I forgot to post last night...

Things are still going great.  We ventured out today to Metrorown and then meet Brody's new best friend, Jerry for supper.  He has really taken to Jerry.  He is what we refer to as the BC Kenny.  We ate currently waiting at our appointment now to talk to doctors so will update tonight as we are headed out on a flight at 2 pm.

The Gong show continues.....

Brody is just fine.  We didn't get to go to our appointment today as our doctor, Dr. Gandhi, was part of a bicycle accident in the weekend so our appointment has been rescheduled to first thing Wednesday morning.  Man what else could go wrong to keep us here when all we want to do is go home.   So that being said we hung out at Ronald McDonald house while Brody took another 3 hour nap.  Been long days but what are you gonna do

Just hanging waiting for our appointment tomorrow

We haven't been up to much today.  We headed to Stanley Park for a bit this morning and hung out this afternoon watching the Rider game (can't believe they pulled off the win), visited with Aunt Denise, Chris and his fiancé Anna (really liked her good job Chris), and had a great steak supper here at Ronald McDonald house with Jerry and Andrea. Overall just ready to get home.   Here is hoping for great news tomorrow and to get packed up and ready to come home on Tuesday.   Stay tuned. .....

Missing my big guy

Today our big guy headed back to Regina with my parents.  It was so sad but he was so brave.  He has been such a trooper during this whole time something that no six year old should ever have to go through.  Wade and I can't wait to give him some one on one time and take a small over night trip with him very soon.

The rest of the day was a three hour nap, supper at Old Spaghetti Factory and a visit with Brody's new favorite friend Jerry and his wife Andrea.

Overall things are going well.  He has a tantrum every time medicine time comes and won't let us change his shirt. .but other than that he is doing well.

Wishing I was home with Caine. 

Green is the new Orange!!!!

Today was our first day out and we went back...the Grey Cup was there.  We walked in the typical Rider style to claim our cup.  They all I think we're shocks that people from Saskatchewan were their in their Saskatchewan Rough rider jerseys...although we did get to meet Lula

We even made it into a BC lions video...which is hilarious as when Lulay tried to hold Brody he lost it.
m.bclions.com/video/103109

After that we had a great three hour family nap..now trying to find something to do tonight.

We're out!!!!!!

We got out at 1145 this morning.  They only took out his pace wires this morning so we had to wait around for 4 hours.  His heart is still in what they refer to as junctional rhythm.  However they are all confident it should return to normal once the swelling goes down.  If it doesn't we will be back in Vancouver within three months to get a pacemaker.  I am on the fence about all this but so happy he is out and feeling great.  When he walks he isn't winded anymore and today Caine told him to understand across the courtyard (small one of course) at Ronald McDonald house and he did and was barely breathing heavy at all.

All in all it has been a great day.  We have a follow up on Monday at 11 so time for some relaxation and a bit of fun.

PS this was the first time we could get him in  shirt for the past week☺

Day 7...and hopefully last day in hospital

Brody is doing excellent today.  Off most monitoring devices and up and walking and playing like normal.  It is unbelievable how one week makes such a difference.

Doctors did rounds tonight...there was a consensus from three cardiologists that he should go home in his irregular heart rhythm and be monitored as they are pretty sure that in due time it will work itself out.  So that being said we have to hang in Vancouver til early next week then can head home and be followed in Saskatchewan. If for some reason his heart doesn't bounce back to normal rhythm we will have to come back to Vancouver in 3 months to get a pacemaker put in.

Now to say good night and hoping that the next post is from Ronald McDonald house.

Day of Extreme highs and los

Brody has had a Rollercoaster of a day.  All his tubes are out and his pacemaker was unhooked.   His heart rate still has an irregular beat but they want to see how he does without the pacemaker to see if it will correct itself ( they believe it has some mild swelling still).  If it doesn't correct itself he will have to get a permanent pacemaker in next week
  Please lots of prayers and positive heart thoughts.

Brody has been up walking alot and he actually was out and about in his car.  He is acting like the old Brody and even tried to beat up Caine tonight (thank God Caine knew not to fight back)

Brody didn't sleep much last night or today due to lots of checks and tests.  They promised not to bug him tonight so here is to a better tomorrow.

We had a good day ☺

Brody had a great day.  As stated earlier O2 off, 2 tubes out and his IV is out.  We got up and walking today and played playroom.  Even got a giggle and a smile.  The only two that could walk him today were the Grandpas...now to get his last tube out and the pacemaker off.  Stay tuned for updates tomorrow  for now good night.

Day 55...I mean 5

Brody is doing better this morning.  We actually even got a smile out of him.  He is up and playing with cars and later today we will get out and go play in the playroom.

Brody got his oxygen off yesterday and he got two tubes off this morning.  Still has his pacemaker in but the doctors seems confident that he will be off in due time.

Once we get in the playroom I will grab some pictures to post.   We are headed in the right direction.

We moved up!!!

Brody had a good night last night. He slept  decent and  his med came down.  This morning we got to snuggle and they took most of his lines out.  He only has his drain tube,  pace maker, oxygen and one IV line (which they are replacing at this moment as his good one came out).  His pace maker is working and his own heart will take over but gets lazy and looses the p wave.  It is common and once his heart swelling goes down the docs are pretty confident it will start working without the pacemaker.

He is just extra sleepy so tomorrow is time to get up and moving.  We will take walks and with Caine here maybe he will play a bite.

We are so excited to see Caine.  My parents (Mike and Elaine) are bringing him.  I can't wait to see his face.

Off to bed when the IV is in.  Prayers and thoughts that his pacemaker stops and his heart works and we can get some of those rubes out tomorrow.

one more night in the PICU

Last night in the PICU was terrible.  Brody fought against the sedation and was at times quite angry.   He actually had a full blown tantrum because they wouldn't give him milk.  He ripped his nose prongs out (which give him oxygen), he ripped the patch off his forehead which measures oxygen pressures in his head and  took out one if his IV lines.  He slept a total of 1 hour as I think he kept waking up scared.

He is quite tired today and has the odd coughing fit, which is quite painful for him.  However he has been having hour or longer naps today so hopefully since it will be quieter tonight he will have a longer rest...Wade is staying with him tonight too so I can get some rest.

If his levels remain where they are he will go up to 3 which is our first step to getting out of here.  I  definately do not want to rush him but getting upstairs gives us more privacy and quiet (and an actual bed for me and Wade)

Here is to a new day tomorrow and to Brody continuing to bounce back the way he is now.

Surgery complete now time to recoup

At 1 pm we were told that Brody's surgery was complete and all went well.  When we went back to see him his breathing tube was out however his pacemaker is hooked up but just to get the electrodes working right again.  They are working on whining him off his med and possibly getting him out of PICU tomorrow sometime.   I am so proud of my brave strong little man.  He has been through hell today but still wants to beat up uncle Kenny.

Good night everyone and here is hoping for good news tomorrow too.

Surgery has begun....and I am totally losing my mind

This morning was the first morning I can remember in a long time that we had to wake Brody up.  He said he didn't want to go and get his heart fixed  he just wanted to go home.  Poor little dude but he was so strong and brave and stubborn....he would not put on the hospital pj's so they took him back in his Rider pj's.

Once we get word after his surgery I will post something with an update.  Surgery will take 5 to 6 hours.

Preopp done only surgery to go

We were at Preopp bright and early 8am....it was a long day for our little warrior.  He went through an echo twice, EKG,  meeting various people and even had blood work done.  Brody NEVER cried during any tests.   He has been such a brave little guy I couldn't be more proud of him at this moment.

After we were done we were all so exhausted we came back to Ronald McDonald house and took a 2 hour nap.  It was awesome.  We then decided  to give Brody his favorite supper out Bugs And Cheese from Boston Pizza.  We then went downtown for a quick visit with cousin Jerry and Autie Bev.   He got to swing and watch the boats in the harbour he loved it.

Now just getting ready for bed and praying for a somewhat peaceful sleep to prepare us for tomorrow.

One last thing, there are some great things to do here at Ronald McDonald house. ..especially slides..soon buddy you won't need to take a break all the time just enjoy☺

We have arrived!!!