Cardiology Update

Max had his first cardiology appointment today since surgery. He has been SUPER hesitant to let us get anywhere near the incision so we figured that it would not go very smooth as he went through another battery of tests. But once again, Max impressed us all and was such a trooper. He amazes us by how tough and brave he is when something like this needs to be done.

More Christmas Pics

Here are more pics from Christmas!!!

Christmas At Home!

We were so thankful to have Christmas at home as we had totally prepared ourselves to spend Christmas in the hospital. What a great gift in itself. Since getting home on the 23rd, a lot has taken place.

Battle Scars!

Max has been through a battle. An emotional, spiritual and physical battle. And with any battle comes some wounds, scars and bruising. We are so proud of this little guy. He has been an absolute warrior throughout this whole process, continually impressing us and ALWAYS being stronger than his mom, dad and the others around him.

We Are Home!

So at 8:30 am we got the news that we were going to be going home today but all of the final discharge paperwork, etc wasn't complete until sometime after 1:00 pm!!! It was an anxious few hours spent playing and waiting but we kept telling Max that his wish of going home was coming true.

Going Home!

Even though yesterday was a bit of a challenging day for us, Max is really doing well and that's all that matters. The doctors and key medical staff just did their morning rounds and the visit was very promising. All his tests from yesterday look great. He is a little behind still on his fluid intake but they expect this to be better at home. His higher heart rate has been determined to be his normal rhythm but may be slightly elevated due to low hemoglobin levels and just being in the hospital. He will be on an iron supplement for 3 months to try and get his hemoglobin levels up. The good news...

Hard Day with Good News

Hey everyone. Today was a bit tougher than the last 2 days in the sense that Max is getting quite bored and irritated with all the tests. Having people touch him, stick things on him, take things off of him, etc. He is quite sensitive now to pretty much anyone except Mama and I can't blame him one bit.

Visitors and Heart Rate

Today was another pretty good day in the Max hospital world. A few changes to report. 

Birthday Wishes & More

Not much to post about today so I guess that no news is good news. Max had a great day overall. Chest tube being out has certainly made life a lot more comfortable, as we expected.

Video From This Morning!

Max saying "Good Morning Dada" to me this morning followed by some gibberish and then him telling me that he wants to eat!

Bye Bye Chest Tube!

So... As soon as Max fell asleep this morning, they came to take out his chest tube! He was such a trooper as they removed it and stitched up the hole. I am certain that Max's pain situation will be much better now that the tube is out.

The guy who did the procedure (a member of Dr. Ross's team) mentioned that it seems as though the fluid build up and tight space in his upper heart region yesterday looked worse than it was because at the time of the x-ray Max didn't take a full breath. This makes everything in that area look compressed because the lungs aren't fully expanded but its almost impossible to coordinate this with a 2 year old. Great news though.

Cam

Morning News!

Max and Abbie had a somewhat restful night while Tata, Papa and I were a little better off at the RMH. Max didn't sleep a lot but was in good spirits.

Evening News!

Ok. So several people have been asking about the current situation with Max's fluid build-up around his heart. Sorry that I failed to communicate this earlier today but the traumatic events of the afternoon kind of overshadowed everything else.

Just Some Pics

Here are some pics to enjoy...

Big Changes

Abbie and I both went to the Ronald McDonald House for a bit today to shower and rest. This worked well as Max was pretty settled for his Papa (Bob) and Tata (Debbie) while we were gone. Upon our return, they were getting Max ready to be transferred from the PICU to an ICE (Intermediate Care Environment) room on the cardiac unit where he will no longer have the one-to-one nursing care. In the ICE room it is two-to-one care.

Status Update

Max was fairly restful overnight however when he woke up he was quite irritated. Not much was able to calm him down besides his mama, so Abbie was by his side the whole night!!! I was able to rest a little bit because the social worker was able to get us a parent room which is very close to PICU and has a bed in it.

Heart to Heart

One of the greatest things about being a parent is seeing your child with their Grandparents! I have absolutely loved seeing Max interact with all of his Grandparents.

By His Side

Max is now in the Pediatric Intensive Care Unit (PICU) where he is being cared for one-on-one by a nurse. He is able to open his eyes but they are keeping him fairly sedated with morphine and 1 other drug to help him relax. His first nurse (Erin) was one of his first nurses last time we were here which is great.

Surgery Finished

We just spoke to Dr. Ross and the surgery is finished. It went really well and they were able to get a lot of the membrane cleaned off, even some membrane that was actually attached to the aortic valve so even that is functioning better now. Dr. Ross is not anticipating the need for a pacemaker and also thinks that they may have got enough membrane out that he shouldn't need to repeat the surgery.The mitral valve also looks good he said. Great news!!!

Max is still in the operating room as they will be waking him up and extubating him before moving him to the PICU. We haven't seen him yet and are anxious to do so. Will keep you posted.

Cam and Abbie

In Surgery

It's 7:50 am and they just took Max back to the operating room. He was so good this morning. Please pray for our little man!

Cam

Such a brave boy this morning as they took him into the OR.
He is way stronger than we are. 

Info from Dr. Ross

When we met with Max's surgeon (Dr. Ross) today, we learned a few key things about Max's heart and the upcoming surgery. Warning... this is a lot of detailed information so please feel free to read or not read all of it. In addition to keeping you all informed, the blog is partially for our memory and reference so we are trying to be as detailed as possible.

Pre-Admission Day

Hello All,

Before I spend the rest of this long blog post bragging about how amazing Max was today, I need to take a moment to recognize how incredible Abbie is. For those who aren't aware, she is going through all of this while 7 months pregnant which must be hard enough, but this doesn't slow her down or prevent her from going the extra mile for her sweet boy...

In Edmonton!

We are in Edmonton now and have checked into our hotel, where we will stay until the 18th when we have a room at the Ronald McDonald House (RMH). So far this is the exact same process as the last time we were here (February 2013) which has brought back a few memories already, however this trip is already going way better than last time!

Leaving Comments Clarification

Hello All,

Your comments mean the world to us. They are what will help us to get through the difficult days ahead and we want to make sure that we will get them. Several people have told us that they have left comments on the Blog, however we have only seen/received two comments.

I don't think that posting a comment from your mobile/smart phones is very easy unfortunately as my attempts to do so have not worked. So if you are able to use a PC or Mac computer, here are a few guidelines to make sure that your comments actually find us. Please read all the way to the end because I think that is where we are losing people's comments.

Trust & Control

Since learning about Max's surgery being postponed, we have had some long days at home, with no plans (as we were supposed to be in Edmonton), and virtual isolation (to prevent anyone from getting sick). As a result, I have had so many random thoughts running through my mind over the last few days so I have decided to write some of them down. Sorry in advance for the somewhat lengthy post!

Ups and Downs

Hello All,

So just a brief update for all of you. The hospital in Edmonton phoned us first thing this morning and they have moved Max's scheduled surgery date back by 2 days. They said that is was looking like the ICU was going to have a bed shortage so rather than us going up as planned and having surgery cancelled last minute, they are opting to bring us up a few days later.

Troubleshooting

Happy Weekend Everyone! 

We are new to the blogging world so please be patient as we are learning the "ins and outs" of this method of communication. We are hoping this post helps answer some common questions/issues that have come to our attention.  

Here We Go Again...

Hello Family and Friends,

It has been awhile since we have been in contact regarding Max's heart health. It seems as though his first surgery happened upon us so fast and spun us into such a whirlwind of emotions that we just wanted to move on with life once Max had recovered... which is just what we did. However, we will never ever forget the incredible outpouring of love, support and prayers from so many people during that time. 

For those of you who know Max (2 years old), he is a very happy and healthy growing boy. He is loving life including books, music, sports, animals, dinosaurs and spending time with his family! Although Max shows absolutely no signs or symptoms of anything being wrong, the doctors have been closely watching his heart ever since the discovery of his heart condition in January 2013 and even more carefully since his first heart surgery in February 2013. Since the first surgery, Max's heart has been gradually working harder in order to compensate for the decreased function of the aortic valve. His heart is getting thick and swollen as a result. A heart can only overwork for so long and after enough time has passed, the damage may not be reversible, therefore the decision has been made to operate on Max's heart again. The hope is that the removal of the subaortic stenosis will allow the heart to stop overworking. Although there is no plan to repair the aortic valve itself (at this time), the surgeon will be able to have a closer look at it during the surgery.


We are currently preparing ourselves to head to Edmonton for the surgery which is scheduled for December 16th, 2014. We will travel to Edmonton on December 14th to begin all of the pre-operation preparations.

We have created this blog in order to keep in touch with those who care about Max. Our plan is to post frequent updates and pictures here. You can also visit the other pages that we have created to learn more about Max's Heart and Our Family. To follow us on this journey, please either sign up to receive our email updates or check back to this site frequently.

Thank you in advance for all of your prayers, love and support during this time. 

Cam, Abbie and Max