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Showing posts from 2011

HAPPY NEW YEAR!

I know...
We get out of the hospital and I stop writing. So I apologize - life just seems to move at a much faster rate once you step back into reality.
You have to juggle and wear many different hats once you get discharged so I prioritize  and sitting down to write hits the bottom of the list.

Mason continues to thrive. He is an amazing gift that we are given EVERYDAY and I continue feel overwhelming blessed with the outcome.
When we started down this journey almost 4 years ago I could have never imagined that things would have turned out so.... (do I dare say it) PERFECT!

We had a WONDERFUL CHRISTMAS!
Mason received a fire truck from Santa - To bad the elves let the one that doesn't work come to our house. So sadly we had to return it to the North Pole. We told Mason that Santa would surely bring him a new one... We are still patiently waiting for it to arrive (Mom and Dad can not find a fire truck anywhere. We are hoping a new shipment of trucks come in with the new year!)



Mas…

WE ARE HOME!!!!

I had no idea that getting discharged from the hospital this time would come with such emotions. I couldn’t help but cry, cry and cry some more. Of course I was happy – I felt like the weight of the world suddenly was lifted off of my shoulders and for the first time in almost four years I could breathe a little easier. We made it – we beat the odds; with a healthy thriving little warrior.
I also felt a huge sense of sorrow for all of the parents who had to take this same walk with out their child. I couldn’t imagine bearing that cross and the day of our discharge – I thought of each family I had meet whose child hadn’t made it.
Discharge day was bittersweet and filled with emotions. We are SO VERY GRATEFUL for Seattle Children’s; the surgeons, the doctors, the nurses, all of the cardiac staff…Mason is alive because of them. When Mason was first diagnosed we knew that the outcome could have been different; we knew what we were up against but believed with the team in Seattle – Mason h…

defining THANKFULNESS

If you came looking for an update on Mason it is below.
This post is all about defining THANKFULNESS. After all we did all just celebrate a Thanksgiving holiday!

This sums up a video I just got done watching. Powerful!

THANKFULNESS...
BONDS FAMILIES
STRENGTHENS FRIENDSHIPS
UNITES COMMUNITIES

THANKFULNESS IS THE...
DEFENSE AGAINST MATERIALISM
ENEMY OF ENTITLEMENT
CURE FOR SELF PITY

THANKFULNESS...
IS GIVEN BY THE SPIRIT
WAS MODELED BY THE SON
HONORS THE FATHER

THANKFULNESS...
IS BORN OUT OF HUMILITY
SUSTAINS FAITHFULNESS
IS A PRE-REQUISITE FOR JOY
LEADS TO GENEROSITY

THANKFULNESS IS...
A COMMAND FROM GOD
AN ATTITUDE TOWARD LIFE
A CONDITION OF THE HEART

GIVE THANKS TO THE LORD
FOR HE IS GOOD
HIS LOVE ENDURES FOREVER.
PSALM 107:1

I have SOOO much to be thankful for!
I pray that THANKFULNESS would always be the condition of our hearts!

Set Back Diverted

Good news: Putting Mason on oxygen yesterday and last night helped to decrease the air around his lung (his collapsed lung is healing). So they decided to NOT put back in another chest tube (AMEN).

His x-ray shows some fluid built up around his lungs but not enough to be overly concerned so they have increased his diuretics (helps the body to eliminate fluid) to hopefully help get rid of it.

The plan for today is the same as yesterday… While Mason is in his room, in bed or sleeping he needs to be on an oxygen mask to move the rest of the air. Like before they encourage him to be out of bed playing as much as possible and since his chest tube is out – we no longer need a nurse to escort us every where we want to go. We can go anywhere we want.

So our first stop was to meet his Nana at the hospital doors. (YAY elevator ride)
Our second stop the PLAYROOM… Mason played for 1 ½ hours and when we left he wasn’t even tired… I even think the amount of energy he had surprised him.

Early thi…

A minor set back

Well we have taken a step forward as well as a step backwards…
Mason's drainage in his right chest tube has been decreasing for the past 3 days; yesterday he only had 37 cc’s out and the two prior days only about 50 cc’s.
So this morning I was feeling optimistic that if his x-ray looked good they would consider pulling it out. This morning’s x-ray was at 5:30am (like EVERY morning; no sleep for this Momma or child) and rounds took place at 8:00am. The decision was to leave the tube in place for one more day. Of course I was disappointment but this is better than pulling it to earlier and having to replace it later. So I make the choice to have a good attitude even though by day this is getting harder to do – I need sleep, my own bed and a massage wouldn't hurt.

By this afternoon Mason’s chest tube drainage for the day was at 0. This kind of drop always sets up some alarms because they want to make sure that fluid is not building around the lungs and that the chest tubes are do…

OUR THANKSGIVING AT CHILDREN'S!

I guess I could say that this year I hosted my first Thanksgiving Dinner - although it was BYOE (Bring your own EVERYTHING) and thanks to my in-laws they covered it all... They literally brought Thanksgiving dinner to us holding nothing back - Lourea even participated in the famous Garka bake off with herself. Guess who won... SHE DID :)

Thanksgiving at the hospital actually turned out to be perfect (considering our situation). After all we are never planning on spending another holiday here so this was a once in a lifetime opportunity.

"OUR THANKSGIVING DINNER AT CHILDREN'S"



Mason continues to feel better and better each day. His drainage from his chest tube has slowed but not to the level that they feel comfortable removing it. So we stay and wait!


Hope you all had a wonderful Thanksgiving!

Drum roll please....

It is the eve of Thanksgiving and we are still here!
We are praying and believing that next week will be our time to finally say good bye to this amazing place and these amazing people. In the meantime we stay here and try to make the best of it.

The hospital does an amazing job trying to ensure that anyone who does not have to be here is able to be at home with their family – They take this so seriously that they don’t even schedule surgeries during the week of the holiday’s (of course they perform surgeries but only if they have to). That being said the rooms are getting empty and the halls are getting more calm. This has also allowed us to transfer to a new room… We have moved from a double room to a single room – (no more roommates). This is a blessing in itself and we are so THANKFUL for it.
The nurses also become less busy; This is great for Mason because they are able to take time out of their day to escort us to the playroom… This place is amazing and Mason of course wants to…

Topic of the day - Chest tubes

Well I wish I had better news in regards to Masons chest tube drainage but unfortuntely I do not...
Yesterday's total drainage was significantly down (138cc) however today we are already at 230cc (drainage) and the "day" or 24 hour collection period does not end until 6am tomorrow morning. So we are going to have another high drainage day. (Dis-like / discourgaging / bad news - choose any other word you would like to describe and insert here_____)

Some good news is that they did not put back in an IV port(Thank goodness) and tomorrow morning he will have his left chest tube taken out. This could have happened today however we felt it would be best if he was sedated so he can not eat for 6 hours prior to the procedure. Thus the reason for this happening tomorrow AM vs. this afternoon. (Who wants to sit with a hungry 3 year old? Not us).
This is a huge step in the right direction but I am finding it hard to celebrate when we still have one large obstacle to overcome (Rig…

Chest tube drainage = BAD WORD

I think any parent who has spent any amount of time in the hospital with their child will tell you that there will be a day when you will reach your breaking point. For me (possibly us) this happened on Thursday. Nothing major happened it is just a result of: lack of sleep, lack of quality sleep, sleeping on a foam cushion, not being at home, being pregnant, living in a stressful environment, dealing with new nurses daily / nightly... I think you get it the list can go on and on and on.
Thursday started out normal – feeling good and positive about Mason’s recovery and by mid morning it became apparent that Mason’s drainage had significantly increased. By 10am Thursday morning he had put out the same amount of fluid as the previous 24 hours.
This increase pushed me over the edge. I thought that each day we were getting closer to being released and this was a set back that I wasn’t prepared for and one that I couldn’t control.
Greg has joked… “we are like dogs sitting in our kennel wa…

Another day in... (wish I could say paradise)

Medically speaking today was another good day for Mason.
He has an appetite, he is active and he is ready to be discharged… Except - he is still draining fluid from his chest tubes. So we stay admitted and wait; praying that tomorrow his output will slow down.

Ryleigh; his “older” cousin came to visit today and he could not have been more excited. He has missed her and she has missed him. So she spent most of the day conceding to his every need and helping the nurse each time they came in. She even learned where her heart was today!

Mason putting on his gun holster

Ryleigh listening to Mason's STRONG & HEALED heart

Ryleigh listening to the nurses heart

Heading to the play room

In other news we officially know the sex of Baby G!
However until all appropriate parties have been told (Family and Friends)– We are not going to share this information on his blog.

Tune in… We will announce it soon!

Kelsey
Don’t have a lot to report…
Mason is feeling so much better and he is the one requesting to go for walks vs. us asking / encouraging him.
We have been on about 6 journey’s throughout the halls today and he of course spends some time chatting up all the cute nurses  He is such a boy.

He has also been off Oxycodone for the past 24 hours and is only receiving Tylenol for pain… I cant wrap my mind around this… His open heart surgery was literally only one week ago today – and he still has chest tubes yet the Tylenol is working great and he is acting much more like himself.

His chest tube drainage is heading in the right direction. Yesterday his right tube put out 153cc’s and his left tube put out 80cc’s… Sounds like we are on track for today to be even less than yesterday.
This is still not low enough for them to even talk discharge but we are praying that this trend continues and we can have this conversation sooner rather than later… (Patience Kelsey)

Mason also had his IV taken ou…

OUR 100TH POST!

Welcome to our 100th post.
It has been almost 4 years since we started this blog. To be honest I feel like it was just yesterday.

My husband came up with the idea to start a blog so we could share with everyone about Mason’s condition. When he was diagnosed (prenatally) it was a very difficult time for both of us so it became our way to communicate with everyone behind closed doors as we dealt with our new reality. This way everyone we cared about stayed informed without having to ask us a million questions. At that time we were to “fragile” to answer them so it really was the perfect solution.

Since then it has become much more than just a place to get information about Mason (although during a season of surgery that is mostly what it is). I have used this blog to share my insights, perceptive and in a way it helped me find my way back. I also pray that it has helped other families going through or starting to deal with their new reality of facing a CHD.

This surgery will close a…