Tuesday, December 27, 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!)



Mason sitting in his "non-moving" fire truck!


Hanging out with his Horsey G'ma before the Santa run!


Grandma, Auntie, Mason and Kara - patiently waiting for the firemen and Santa to arrive while the rest of us stayed warm inside!



Daddy and Mason - The sounds of the sirens were loud so in true Mason form; he covered his ears!


 Mason and Ry opening gifts and Nana and Papa Johns

 Auntie and her favorite gift :)
 Annual cousins picture...

 I got crafty and made LAUNDRY DETERGENT!
(Yes you read that correctly)

 Mason and Papa
 The beat the Santa with a mallet :)

 One happy (and spoiled) little boy!


We hope you all had a wonderful Christmas and News Years!!!1

Thursday, December 1, 2011

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 had a fighting chance.
We will be eternally grateful for the entire team of people who helped give us the outcome we have today… A THRIVING LITTLE BOY; and we are especially thankful for his surgeon, Dr. McMullan. We are so thankful that years ago he chose this as his specialty, that he was given this incredible talent, a steady hand and the gift to mend broken hearts. He is an outstanding person and an incredible surgeon. We thank God everyday for him.

It is crazy because as parents you think that it is your job to teach your children… and it is. But the reality is that if you let them they teach you. Through Mason we have learned real strength, pure beauty, and how to fully rely on our faith. We have learned that your life should be counted by the people whose lives you touch, not by the number of days you live.

Discharge day we closed a HUGE chapter in our story. His heart journey is not over – it will never be; he will always be a boy living with ½ of a heart; the important part – HE IS LIVING!

Thank you for your prayers and support.


Sunday, November 27, 2011

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 this morning I was afraid things were not going to go our way. The nurse told me at 4am that they put Mason as a NPO patient (Nil per os which is a medical term meaning to withhold oral foods and liquids). The reason for this order was that if they needed to put in a chest tube they would have to sedated him and take him back into the operating room… I was convinced that was a bad sign. (Should have had more faith)

During rounds with Dr. McMullan we even heard the D word (DISCHARGE). Instead of waiting of his chest tube drainage we are now waiting on the air in his lungs. Guess it keeps our journey interesting.
Here is how the D word got brought up…if Mason makes as much progress as he made last night – tonight; tomorrow could be the magical day!!!!
I am trying not to get to excited; because that could just lead to a large disappointment and due to exhaustion I don’t handle those well however I have started to pack to go home! We are all beyond ready even though if you ask Mason if he wants to leave he says “No I will stay here”… Crazy kid!

Mason and his Nana




Enjoy your Sunday!

Saturday, November 26, 2011

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 doing their job… So the Doctors went back and took a more in depth look at his morning x-rays and determined that the chest tube placement was off and was not working so they would need to immediately remove it to prevent air from entering his lung cavity.
At this time – My Mom was in the room sitting with Mason; I had left for a shower and Greg ran to the fed-ex store to send off some t-shirts. They gave him some additional pain medication and told her they would be removing it within the next 30 minutes. So my “shower” became non-existent so that I could be with him while they pulled the tube. Luckily Greg also made it back… He is the best at calming both Mason and myself down.

The tube was pulled around 3pm and immediately following they took Mason into x-ray (again). This is completely normal and the purpose is to see if he had air or fluid around his lungs.

Our step backwards – Since his tube placement wasn’t properly in place (reason unknown – probably due to how active he is; it some how got pulled out) and hadn’t been in place for awhile (possibly 24 hours) the x-ray showed that his right lung has started to collapse.
So our game plan for tonight (AND WE NEED PRAYERS THAT THIS WILL WORK) is to put him back onto an oxygen mask to try and expand his lung. If tonight he has problems breathing or tomorrow in his x-ray he does not show progress they will have to re-insert his chest tube. This would be a large step backwards and would be very painful for him.

The other area of concern is that his chest tube was not ready to come out and that fluid will continue to build around his lungs. If this happens they would also need to re-insert the chest tube (PRAYERS FOR THIS WOULD ALSO BE APPRECIATED).

Despite our set backs today Mason looks and feels wonderful. HE IS AMAZING!

When trying to convince him to wear his mask we explained that it would help make his lungs bigger so we would not need another tube(he fully understands the tube part)… His response “NO – I don’t want a bigger tummy” once he realized that his lungs did not mean his tummy he decided he would wear his mask like a champ!!!!

I of course am biased but he truly is the bravest little boy I know.

WE ARE PRAYING AND BELIEVING FOR GOOD NEWS TOMORROW! If we get our good news this could mean discharge within the next 48 hours!

Thanks for standing with us in faith!

Friday, November 25, 2011

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!

Wednesday, November 23, 2011

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 go everyday but because of his chest tube he can not leave the floor with out a nurse present. This is because of what could happen should his chest tube accidentally get pulled out (air in the lungs).

Below are a few pictures from today's playroom outing...

My husband said it best the other night on facebook "God has surrounded me with great people in my life... and he would do it for any of us. You just have to let him". He is right - We are blessed to have an amazing supportive family and friends who stand with us in faith... This didn’t just happen - God placed these people in our lives to help turn our trials into triumph.

One last thing to share before I sign off - Start thinking PINK because BABY GIRL GARKA is coming this March :)
Who says you cant celebrate while you are in a hospital - we had "it's a girl" cupcakes made from trophy cupcake for us and the staff to celebrate our big news!!!! Of course the person who is the most excited... Mason - he called it the whole time; should have known!

Have a blessed Thankgiving and enjoy your friends and family!

Kelsey, Greg, Mason and Baby Girl!

Sunday, November 20, 2011

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 (Right chest tube drainage).

Tonight (thanks to my in-laws) Greg and I were able to escape and go have dinner with my family. It was nice to get out and to feel "somewhat" normal again but of course it is not the same with out Mason with us.

Did he miss us NO - I think he needed a break from us as much as we needed a break from this place... So even though I was hestitate to leave it worked out for all of us.

I hope you all have a wonderful Monday!

Saturday, November 19, 2011

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 waiting for our owners to come let us out” unfortunately this is a joke that is kind of not a joke. We sit in his hospital room – we go on adventures – we read books – we watch movies but at the end of the day we come back to the same room we left.

Mason is doing EXCELLENT which makes this even harder. He says “I feel all better; lets go home” How do you explain to a 3 ½ year old that he cant do what he feels like he wants to do because he has chest tubes draining… He doesn’t care. He wants to leave!

Friday another big day for chest tube drainage. This made them concerned about his protein levels and dehydration. So they ran some tests and talked to us about putting an IV back in. (all I could think was great; another set back).

When his test results came back his levels proved to be lower than they would have liked however they gave us some time and the good news is as of right now – they are not putting his IV port back in. They believe that today we will see a drainage decrease and his levels will level out.
So far his drainage today is on track to be less than the last two days but still higher than3-4 days ago.

Let’s talk sleep: Mason is confused and some how we need to get him back on track. He is up every morning by 4am ready for breakfast; by 8am he is ready for a nap… nap at 8am are you kidding me?!?! Luckily we have convinced the doctors to skip vitals in the middle of the night and this has helped him sleep for a longer period of time. Last night Mason and I were able to get 4 hours of sleep un-interrupted (RECORD BREAKING).
If you think being in the hospital is relaxing and allows patients and parents to get rest – you are very inaccurate it is quite the opposite.

Thankful today for Mason’s smile, his laughter and his life. I know that we could be dealing with issues FAR worse than chest tube drainage and I am thankful we are not… I am reminding myself of this hourly so that I don’t lose focus on what we have to be grateful for.


Auntie and Mason... I dont know what it is about these two but some how when they are together someone ends up with food all over them

Wednesday, November 16, 2011

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

Tuesday, November 15, 2011

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 out today. The port went bad and since he is doing so well and not requiring any IV fluids they decided to take it out all together. This is a first. Usually they require that all patients while admitted have a port (being used or not) and lastly they are not requiring him to be hooked up to machines all day. They plug him in every four hours for rounds / vital checks and then they let us unplug him so when he gets the urge we are free to roam (providing we don’t leave our floor) this isn’t the easiest task since one of of has to help him and the other has to carry his chest tube boxes but outside of that we are free… It is almost as if we are guests staying at a hotel. One that we would like to check out of soon but none the less we are trying to enjoy our stay given the circumstances.

Hope you are all having a FANTASTIC Tuesday!

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 HEAVY chapter in our lives but it isn’t the end of our journey. We will continue to live everyday with a child who has a single ventricle heart and this will come with obstacles that we will not be able to predict. We are a strong family – and together… Greg, Mason and I we have been through a lot and since this is out 100th post we wanted to share with you all just how strong our miracle man is…

Mason and his Daddy before his transport to Children's Hospital


Our first family photo. This was also the only time I was able to hold Mason before his surgery.


Mason after his Norwood Surgery. They left his chest open for 3 days to help with swelling. During this time you could actually see his beating heart.

Recovering after his chest was closed

Heading home for the first time

Happy at home

Our amazing little boy!

6 months old and ready for his Glenn Surgery

After Surgery

Still not feeling 100%

Feeling better at home

Happy FIRST Birthday!

LIVING LIFE

Last but not least - His Fontan Surgery

This is it. When we check out of here there will be NO scheduled surgeries.
Talk about a lot to be thankful for this Thanksgiving!!!
 
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