A Better Day

Wow, last night was a long night.  They woke Mason up every 3 hours to do his fasting glucose tests, which if you know Mason you know how bad he hates pokies.  Then on top of the every 3 hour wake ups at one point Mason's heart rate wasn't its normal so they came in and did an EKG, and another time in between those times they came in and they were doing something with his IV's.  So needless to say there wasn't much sleep happening.  Today was filled with some playing in the playroom, more doctors,  and figuring out meds.  The conclusion of the low blood sugar is that Mason has a fasting intolerance.  Nothing to really worry about from our standpoint unless he is fasting for a surgery or procedure.  All the metabolic tests came back just fine so that was a big relief.  After going through everything today, Mason was able to be discharged around 3:30 this afternoon.  He has been super tired and emotional after everything but wouldn't fall asleep, even during a long walk up to a little shopping village to a trip to Trader Joe's and CVS.  Tonight at the house was Dessert with Mr. Dee. Mr. Dee comes every Thursday night to the house and makes some yummy dessert for the house.  Mason adores Mr. Dee, and Mr. Dee is so great to Mase.  He let Mason help him with the whole cake making and cleaning up, then while it was setting he played a good old fashioned game (invented by Mason and Mr. Dee) of hide the chips.  Mason laughed and had such a good time, it was nice to have him not be so grumpy for a minute.  Hopefully tonight we will get some much needed  rest.  He has to go back to the hospital tomorrow for some more appointments, but they should be minor with no surprises!

 

 Dessert with Mr. Dee

 

Mason and Mr. Dee



Quick Update

Tired and delusional post: Mason had his heart cath this morning. From start to finish it only took about 2 hours which seems so fast compared to his 6-8 hour surgeries.  All of his pressures have slightly come down since his April cath which his team was very happy about.  They are still higher than they want them and his heart rate is still high so they started him on a beta blocker to slow things down and help his heart out.  Because they wanted to monitor his heart rate in it they knew they would keep him overnight.  A new thing they found though is a new narrowing in his pulmonary artery leading to the left side of his heart on top of the atrial stenosis.  So that means another open heart surgery is in his future.  When his surgeon is back in town he will review everything and discuss whether he wants to fix it now or wait 1-2 years. As long as it is safe, Zac and I are pushing for the 1-2 years idea.  We will see what comes of it all later.  Now that the heart info is covered, Mason gave his cath team a scare this morning.  It is protocol to check a blood sugar before starting and his blood sugar was a measly 34.  Normal is between 70-100, so he was very very hypoglycemic.  So he got another specialty team now, endocrine was just added to his list of specialists that follow him.  Due to not knowing how, why, or when his sugars got so low he is getting his blood sugar checked every three hours until morning, which so far has been a fight. But they want to see at what point it drops and take a bunch of labs at that point to try to figure out what is causing it.  Tomorrow we will meet with a nurse and do glucose test training and he will come home getting regular glucose tests.  We walked around the unit for a few hours non stop tonight and at the end we got to join up with Mason's new buddy Bronson who had the bivent in July and hasn't got to be discharged yet so feel free to add him to your thoughts and prayers! Mason was super tired by that time so I can't wait for tomorrow so he can play and be happy with his arranged friendship.  In the meantime I should sleep while he does because every 3 hours will come quick! Thanks for all the support and kind words, they are appreciated! 

 

Back Again

We are back in Boston!!! Yesterday we flew in and today we started right into things today with 6 hours worth of appointments, xray, labs, echo, ekg, vitals, consents, and a whole lot of running around to all those different locations.  As always Mason was a champ through it all only getting impatient a few times.  The ladies at the pre op clinic remembered Mason and he used his cute card to his advantage.  He also was so excited to see Dr. Banka, that when he saw her he went on a dead run down the hall to give her a big hug.  He will have a heart cath tomorrow to check hemodynamics and possibly try some new medication if his heart pressures and heart rate are still too high. The plan is, as of now, that he will have to stay one night in the hospital but should be able to get out on Thursday.  All prayers, and positive thoughts are more than welcome for good results!!

Ready to take off!

 Flirting with the vitals tech

 Echo

 Mason was so excited to see "his puppy"

So excited that we have had to take his picture by it every time we walk by it.  And he also talks to it like it is real.  It is pretty dang cute.

Red Sox, Heart Cath, Prayers, and Fun

We(Mason, Kylee, and me) are back in Boston!! I am so hit and miss with updating his blog but do think about it a lot, it's the thought that counts right? We are back in Boston because Mason had a scheduled heart cath surgery to check his pressures.  We got here on Monday to start the crazy schedule on Tuesday.  We had to be at cardiology pre op on Tuesday early morning.  It was so hard to get Mason up due to it being 5:30am in Utah still and being so tired from traveling the day before.  His appointments went so so well! They were going to have to balloon his pulmonary artery, but when they did the echo it showed that it had actually fixed itself! They couldn't have been happier with how all the data was looking from his echo and chest xray!  They scheduled Mason to be first case in the cath lab.  We were trying to decide what to do the rest of the day after he was done with his appointments and then we got a phone call saying there was some Red Sox tickets donated and available if we wanted to go so of course we took them! It was FREEZING cold but so worth it.  Mason sure does love the Red Sox and wants to be a "Red Sox gamer" when he grows up.  In the morning we had to be at the hospital at 6:40am.  He was trying to be so brave, he was polite to the nurses and was talking to Aggie but you could tell he was so nervous.  When the anesthesiologist and the nurses came in to give him his versed shot in his arm he even lifted up his little sleeve on his arm for them to put the poke in as tears rolled down his cheeks because he hates pokies the very worst.  It breaks my heart seeing him be so brave knowing that it was going to hurt.  It only takes a few minutes and then he is out and they wheel him away.  It never gets easier giving my baby to them.  His cath only took just over 2 hours because they didn't need to do any intervention! I was so happy about that.  I wish I could say everything looked perfect in his cath but unfortunately that wasn't quite the case.  His pressures in his heart are too high and his heart is on the stiffer side and isn't relaxing all the way so it is having to work extra hard.  It isn't severe so that is good but it still is very serious and we need to start doing everything we can do to try to fix the problems.  The hard thing is with some of it there is no medication or intervention that directly helps.  There is meds that indirectly can help so all the meds he is currently are on are being increased to their max doses and he is going to start some new ones.  Also when we get home he will have to do a holter monitor test to  see what his heart does as he plays and does his thing at home.  The results were pretty shocking because physically he shows no signs or anything being stressed, that makes us VERY hopeful though that we caught it early and can fix it without too much stress.  Since he didn't have any interventions he got to be discharged after he laid flat for 6 hours and had a chest xray.  I have to say how amazing he was laying flat for 6 hours straight.  He only napped for 10 mins at the most and he just laid there and talked and watched movies without complaining.  There was a 20 year old next to his room and all he was doing was throwing a fit about laying flat for 6 hours and there is my crazy, full of life 3 year old showing us how it's done to be strong and brave and do what you have to do without complaining.  When he got discharged we had a low key night.  Today we were going to go into the city but last minute got another phone call saying there was more donated tickets available so of course we took them! It was a rescheduled game from the night before due to being rained out so it was in the afternoon.  Mason already is asking when we can go to another game, he would go everyday if he could, and I would take him because he sits and watches the whole time.  We fly home in a couple days and it will be so good to see Zac and Ryder because we miss them tons.  He will be followed closely at Primary Children's and then we will come back to Boston for more follow up in 6 months.  Keep Mason's heart in your prayers that it responds well to the med changes that that his whole heart will keep beating strong! Mason Strong!

 

Mason and "his dog" and the Yawkey Family Inn

 

Freezing at the game

Kylee(Mason's aunt) and me loving the game

<3

Kylee's first Taxi ride!

Baseball boy

 

He was so tired he fell asleep on my face sitting straight up.

 

Waiting to get his heart cath

 

Aunt Kylee feeding him popsicles after he woke up

 

 



2nd Red Sox game of the week.

<3

Check Up Day!

Mason has had a couple cardiology appointments since I last posted, but as it usually goes with me is no news is good news.  Today he had an appointment with his cardiologist to make sure he was good to fly to Boston in less than two weeks and to make sure there were no surprises.  He always starts by going for a chest xray.  He used to scream when he had to have xrays but the last two times he has walked right in like a big boy, has me take his shirt off then goes with the xray techs by himself while I stay in the back of the room, it is crazy to see him become so mature in these situations.  After his xray he had an echo.  Usually we have to FaceTime somebody while he gets them done to keep him occupied for it, he has to lay still for close to an hour.  Today my FaceTime wouldn't work and he still laid on the bed by himself so still and not complaining at all while he got his echo.  He actually laid so still that he ended up falling asleep during some of it.  After his echo he got to pick out a prize then we went to a room to see the doctor.  In the room they did an EKG aka the Mason Robot Test, and checked his oxygen.  His oxygen is still beautifully at 98%! He was so happy today that when one of our friends/employees that works there came in, he sang The Scottsman to her, kind of a big deal because he can be picky on what he does and where. After everything was checked the doctor and his fellow came in.  Everything in the echo was unchanged except for some gradients.    The gradient across his pulmonary went down significantly and the gradient across his ASD went higher.  Usually the lower the better with the pulmonary but with the other one being higher they don't think it is a good thing at all.  It lead them to believe that his Left Atrial pressures are possibly high, one of the biggest thing that is trying to be avoided with him.  The only way to measure the pressures is  with a cardiac catheterization.  His doctor said he is glad Mason has one in Boston this month so they can see what the pressures are and we can get a game plan, so right now we just wait.  On the positive side of things though is it hasn't affected anything yet.  His function is really good and his chest xray was really good.  He did get his Lasix(diuretic) increased to see if that helps the gradients at all.  He got to pick out another prize after his appointment.  It is safe to say they spoil him pretty good when he goes, but he was such a good boy that he earns prizes.  I love my little dates with him even if they are to the doctor.  He is such a funny outgoing boy and you can't help but laugh and smile at him. For the next week and a half I have to try my hardest not to stress out until we get the answers and tests when he goes back to Boston. 

Such a big boy

 

Chilling for his echo

 

Echo's are obviously boring to him now

 

The Mason Robot Test

 

All smiles

 

Time for a check up and prayers needed!

Mason had his first cardiology check up since being home almost a week.  I was kind of nervous and just kept hoping that my gut and how he was acting was going to be what was reflected today, and it was!  He had an echo, chest x-ray, and EKG, followed by a visit with his cardiologist.  His cardiologist came in with the biggest smile and to say he was amazed with Mason would be an understatement! I kept saying, wow he has a full heart!  It was so great to hear him say that because before we left he was a little skeptical of the whole thing, hopeful but skeptical. 

Mason's echo seems to be the same as when we left Boston, based on numbers and measurements.  His chest x-ray still isn't in the clear so he is still on his diuretics to keep fluid off.  His oxygen saturations were 98%! I still can't get over seeing that number.  Mason is still not in the clear with recovery so has to go to Salt Lake every 2 weeks for follow ups, but hopefully the farther we get out the farther the visits can be spread.  So in a nutshell today was a great check up day for Mason!

On another note one of our dear heart family's could use some extra prayers! Our friend Teagan has been in the hospital dealing with plural effusions that his body isn't being able to kick.  He is 5 and his birthday is coming up, it would be so great for him and his family if he could get home for that.  We stopped and saw him today and he is one of those kids that just make you want to be positive because he is.  You would never know that such a sweet happy boy is so sick on the inside.  They almost got to go home but then the day that they were supposed to go the effusions were back.  He was so cute with Mason, and now Mason can't stop talking about Teagan.  Teagan also has an older brother who is always so nice to Ryder and Ryder always looks up to him.  This family raises some amazing boys.  Please pray for them and all those involved in his care.  He is a Incredible (true fact!)  and is going to beat these dang things, I know it!

<3

 

Us, camera shy Mason, with our other family!

(Isn't there a crazy resemblance with Teagan and Mason?!)

 

Thumbs up and a cheek full of Starbursts for his Echo

 

Waiting to see the doctor

Super muscles for a Super appointment!

 

A lunch celebration

 

Tired boy on the way home!



Home Sweet Home

There is a lot of truth in the saying There is no place like home.  We made it home safely and Mason has been doing great.  We had to be at the airport in Boston at 4:30am so it was an early morning, but Mason wasn't even grumpy.  When I woke him up to tell him it was time to go on the airplane he popped right up with excitement.  The taxi company sent a small car to pick us up, even after we told them how much we had.  We had 3 very large bags, 3 carry ons, 3 backpacks, and our big stroller!  The cab driver was so good about it and somehow we fit it all! He told us if anyone else would have come they would have looked at everything we had and told us sorry and left.  We got through security pretty quick and only had to wait about 30 minutes before we started boarding the airplane.  We always preboard with a medical pass so we can wipe everything with Clorox wipes before everyone gets on the plane and also before Mason can touch anything.  We are those people.  Our flight from Boston to Chicago went smooth except for the people in front of us and behind us probably ready to kill us.  Mason has a camelbak water bottle and something must have happened when the plane pressurized that it cause a lot pressure in his water bottle.  Zac and I had our eyes closed then all the sudden Mason is saying uh oh and I am getting wet.  He opened up his water and it was spraying EVERYWHERE! I couldn't get it to stop either.  It was literally dripping from the ceiling and got the people in front and in back of us.  If looks could kill.  What made it worse is all I could do was laugh and say its only water.  I'm sure they didn't care what it was they just didn't like the surprise shower or that the mom couldn't stop laughing.   Kind of embarrassing.  Other than that the flight went well and Mason's oxygen only dropped a few point with the change in altitude pressurized.  When we landed in Chicago our other plane was already boarding so we had to run to the other plane and I still had to check Mason's stroller there so that was a stressful moment as we were one of the last people on the plane but we made it and got seats together so it worked.  That flight went well and we were in Salt Lake in no time. When we got to Salt Lake Mason wanted to walk and pull his suitcase.  He walked, and sometimes ran, pulling his suitcase all the way from the gate to baggage claim without getting tired! Before we left he couldn't even walk from the car to the house without wanting to be held. It was a pretty great moment for Zac and me to see. My mom picked us up and we drove home.  I couldn't wait to see Ryder so before we came home we stopped at Ryder's school and I went in and checked him out.  When he saw me he came running down the long haul as fast as he could and jumped to me.  I cried but had to stop quickly because I didn't want him to be embarrassed of his mom crying at his school.  Mason was very excited to see Ryder also.  When we got home our door had been heart attacked from our neighbor, it is so cute and I still haven't taken it down because I love it so much! We settled in and then a bunch of our friends came together bringing goodies and gifts to the door to welcome us home.  Mason and I loved seeing all our friends again.  Later that night Mason's grandma, 3 aunts, and 2 cousins came to see us.  It was so fun to have all the kids playing again and it was a bit chaotic but it was welcomed chaos seeing everyone together again.  Mason has slept pretty good since being home and has also still been eating a ton.  His oxygen levels have stayed good and so has his breathing.  It has been such a relief because they were pretty sure he would do okay at a higher elevation but they didn't know for sure.  Mason loves being home and I love seeing my whole family back under one roof and it makes it even better that it is under our roof.  He has appointments and tests at Primary's this coming week but I am expecting only great results.

 

The sky was so beautiful on our flight and I couldn't help but take a picture!

 

Mason walking/running off the plane

 

At the airport

 



We were heart attacked!

 

 Wii U time

 

 I can't get enough of these two being together.  My heart is now whole also.

 

Checking out the Disney Infinity Characters

 

Dress up with his brother, aunts, and cousin



The Sweetest Word....HOME!

Mason had a cardiology appointment yesterday.  It was an appointment to find out if he can go home.  Everything checked out and we got the okay to fly home after being here for 6 weeks!  His echo is still stable.  He still has some trivial to mild leaky valves, which aren't a worry but something that will be watched closely.  He also still also has mild aortic stenosis which is also something that they will continue to watch.  With such big repair and his heart and body adjusting to a completely different circulation his heart is very mildly hypertrophic, which means it is working pretty hard.  You can actually see his heart pumping on the outside of his chest, another thing that needs to be watched closely. Lastly he has some narrowing in his pulmonary artery.  So in a nutshell, even though he has a full heart, his heart has a ways to go before it is better.  It is still in a critical recovery state and they are still being very cautious with him.  Although we are going home, things wont be back to normal just yet.  First they don't want us traveling, even to Bear Lake, during these next few months.  Also we still have to try our hardest to keep him from getting sick.  With his heart currently being hypertrophic and everything still adjusting a cold could be devastating to his hearts recovery.  They way they stressed it made it feel like it is more importantly to keep him healthy now than it was before surgery.  With time things should all stable out and Mason will be able to get a cold and fight it like a healthy child, but that time isn't yet. So until we come back to Boston Mason wont be able to go anywhere but home and on drives in the car and the only people who will be able to come see him will have to be very healthy with nobody sick at their house.  We have to bring him back in 8-12 weeks for another heart cath to check numbers and progress and possibly balloon the narrowing in the pulmonary artery.
His cardiologist feels he will do just fine returning to a much higher altitude but will need to be followed by his cardiologist in Salt Lake very closely. 
We are so excited to be able to be at our own house with our family under one roof.  We are so so grateful for such an amazing support system.  We have met a lot of people who have nothing, literally, due to having to go through medical treatment with their kids. I feel so blessed to have grown up in Bear Lake with all support we have gotten from the community.  I have also seen the community come together for others there going through hard times and it warms my heart to see a place full of so much giving!  I also feel like it isn't a fluke that we decided to stay in Logan longer after Zac graduated.  Our friends and neighbors have been so great to help us out with whatever we need.  I am also so grateful for people who have done fundraisers or are planning them, they are a lot of hard work, but have helped our family out more than anyone will ever know.  Our first trip here we spent over $5,000 in housing alone and this time we were able to get something cheaper, but still have had to pay close to $4,000.  On top of that we had to pay airfare, food, and transportation here, and bills back home while not making money taking time off work. There is NO POSSIBLE WAY, none,  we could have done this alone, and it makes me cry to know how much help we have gotten from friends, family, and strangers who have fallen in love with Mason.  When we come back to Boston it will hopefully only be for 5 days at the most and then after that we will hopefully only have to come here for a few days every 6 months and then hopefully get down to yearly visits.  This has been an amazing trip seeing miracle after miracle and meeting so many great new friends. 
In less than 24 hours we will be flying home, until next time Boston!
<3

 

Watching the trains before his Echo

 

Being brave for his EKG (or being a robot as he would say)

 

Mason and Dr. Banka, I love this doctor more than words!

Enjoying Life

Sorry to all of you who watch for updates on here, I have slacked in the updating department since Mason was discharged.  Mason has done great and continued to thrive since being discharged.  Zac and Ryder flew back to Boston last week and it brought all our spirits up being together.  It has been really cold here so we haven't been out too much.  It is so deceiving because when we look at the temperature, even the real feel, it doesn't sound too bad but as soon as we start walking the cold that they have here is so different and seems so much colder than the same temperature at home.  There has been a lot of different places/families/colleges that have brought in yummy meals at night so that has been really nice.  On Sunday night we celebrated mine and Zac's birthdays before my mom and Ryder flew back to Utah.  Ryder and my mom left on Monday and it was so hard to see them leave.  Mason had a slight meltdown that morning because he thought he was getting to fly home. We rode the subway with them that morning to the airport and watched them through security to their gate.  After they left Zac and Mase made sure I didn't stay sad too long and took me out to dinner and to pick out a present for my birthday.  

Yesterday Mason had his first appointment since discharge.  He was very nervous and upset about being back at the hospital.  He cried hard most the time even during his chest xray and his EKG which before surgery he didn't cry at all.  It was hard seeing him so stressed out about being there.  He finally stopped crying when Dr. Banka came in the room.  He let her listen to him and he got to listen to her, Zac, and me.  After the appointment when he was all done he perked up and said "me not have to have a pokie?!"  We had told him no pokies or sleepovers at the hospital but I guess he had to see it for himself and it made him really happy to see it be true.  I hope that makes next week easier because he will have an echo which he can't cry for to get good pictures that they need before we can go home.  And with all of us being homesick a good echo is necessary for us to get home. 

Mason is doing AMAZING.  His oxygen is between 97% and 99%.  He wants to run everywhere to show us how fast he is.  The other day he walked up a flight of stairs and ran down a long hall and wasn't even tired or blue.  It was a magical moment for sure.  A day that I could only dream of in the past and now it is my new reality.  A beautiful reality.  With how good he is doing it is easy to forget he had surgery, a huge open heart surgery changing his whole heart, a short 3 weeks ago. We are so grateful that he was a candidate for this surgery and for the doctors here that pushed the envelope to find new hope for those who qualify.  I am so glad to have Mason be a pioneer in helping the doctors get better surgeries and outcomes for patients to come through after him. 

Today we are taking him to Frozen at the movie theater.  He loves the soundtrack and I can't wait for him to see it on the big screen with popcorn.  He is excited and keeps asking if it is time yet. 

I will try harder to update more often but just take it as no news is good news with where we are in the recovery as of now.

 

 Such a tough little guy!

 

Going outside after the snowstorm the day after discharge

 

Making brownies for Zac's and my birthdays

 

 I miss this boy so much!

 

Birthday partying!

 

Saying goodbye after they went through security through the glass. </3

 

Celebrating a good check up with a McDonald's lunch!



Post Op Day 14...... Discharged!

Tonight I am blogging outside of the hospital! Today, 14 days after a life changing surgery Mason was discharged.  It is such a great feeling.  I had mentioned to the nurse if he was going to be able to go home today I would like to go by or around noon, and they made it happen! The morning was pretty busy with chest xray, labs, packing, paperwork, scheduling meds, and saying goodbyes.  The goodbyes were bittersweet.  Some of Mason's ICU nurses wanted to see him before we left so we walked to the ICU and they came out and told them goodbye.  They gave him a lot of hugs, a prize, and still tried to talk him into going home with them.  These girls were my lifeline and as much as they took care of Mason they were always making sure I was taking care of myself also.  When there is one nurse per patient you get to know them pretty well and we were pretty lucky to not have a lot of different nurses so they got to know us and we got to know them, and it didn't take them to fall in love with Mason.  We will miss them! Mason's nurse today was awesome and she kept trying to talk Mason into staying.  She kept telling him that he was the best, and that he needed to stay to hang with her all day, he just smiled and said no.  Then there was Ryan.  Ryan is a  clinical assistant on the step-down unit and she is like a ray of sun, for real.  Her and Mason had an instant bond and he immediately warmed up to her and even would let her hold him and play which is huge because he would hardly let my mom hold him.  She had dance parties with him, and he sang her songs.  She made him feel important and she will never know how much her kind loving personality touched my heart! I always knew Mason would be happy when Ryan was around(plus she has a "special" heart also!).  I almost cried when we said goodbye to her.  We walked to where we are staying and ate lunch and rested.  He is starting to get back to his busy self.  Tonight he even said, "I can run and not me get tired anymore!".  Granted I haven't let him run but the statement is huge.  We still don't know when we will get to go to our real home yet.  He has weekly appointments for 2 weeks and in 2 weeks his cardiologist said we can discuss when we can fly home, so right now we just enjoy life outside of the hospital in our temporary home.  Tomorrow there is supposed to be a big storm so I am hoping for a low key day of movies and maybe making cookies with Mason to keep him entertained.  Thanks for all the continued prayers, this trip has been a amazing experience with a lot of miracles. 

 

Ready to take his car back and roll out of there!

 

Mason listening to Ryan's heart

 

<3

 

Just leaving the hospital

 

This is the best picture I was able to get of him after getting out, he hid every time I would go to take a picture.