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.



Post Op Day 13

Once again sleep overrode blogging day 13 last night, it if Mason didn't have to wake up so early this morning I am sure I would still be out like a light, I can barely keep my eyes open.  Mason had a really good day.  He smiled a lot, was happier to the nurses, and we went on lots and lots of walks.  He had to have his first blood draw since they had to take the line out of his neck.  They numbed his arm with cream before so he didn't really feel it but the idea that he was having a pokie made him pretty upset.  He got to pick a prize out of the treasure box though so that made it all worth it.  It was a hang out kind of day with nothing going on most of the time.  Later in the day the Nurse Practitioner came by to asses him and decided to take his stitches out of his chest tube sites on his belly.  We went to treatment room and he thought it was pokie time.  I love the treatment room so that his room is always a "safe zone", but he sure does hate when we walk into it.  The stitches came out easy and painless and he got to pick out another prize.  The hope now is that post op day 14 will be the lucky discharge day.  Dr. Banka(his cardiologist) came by and said she wants to do a post op visit in 1 week, another in 1 week after that and then we can discuss dates for a cath in 2-3 months here in Boston and we can discuss when we can fly back to our real home.  So we will be in Boston for at least 2 weeks after he is discharged and then we will find out if it has to be longer.  Here is to hoping day 14 will be the day of discharge!

I took some cute happy pictures of Mason but for some reason they aren't loading today :(  I will try and upload them later.

Post Op Day 12

Mason had another really good day today.  He woke up happy and stayed happy for most the day minus when it was time for meds and vitals.  Our roommates got moved to a different room and nobody moved out of the ICU today so Mason gets his own room tonight, YAY! Funny thing, Mason thinks the hospital cafeteria is McDonald's  so today for lunch he was able to go eat a hotdog at "McDonald's"  I figure why not let him think that if it makes him happy! Tonight before the Super Bowl started he wanted to go for a walk.  Right as we were in front of the nurses station and right before his room he fell and took the brunt of it with his forehead.  It was loud, he screamed, and nurses came running.  It wasn't that hard of a fall but because he is in the hospital it is taken pretty seriously.  His nurse had us go straight to his room to hook him up to the monitor and so she could asses him and look at his head.  Two more nurses came in to check on him and then the Nurse Practitioner.  He kept ice on his head for a few minutes then was ready to go walk again.  I made his ride in the car and I walked him around the halls so we could avoid that happening again.  He later said that he didn't like all the people running to him, that probably seemed scary in his eyes.  He watched the Super Bowl here and there.  During the game the nurse tried to flush the line that was in his neck for meds and blood draws and it had gone bad.  I am sad about it because he didn't have to have any pokes with it in but I am glad it lasted so long,  they said they usually only last 1 week at the longest and his made it almost 2 weeks.  After the game the nurse took the IV out and Mason was able to finally get in the shower.  He was starting to get smelly so I was so happy to get him cleaned up.  He looked so good once he got out and was dried and clean.  We ended the night with popcorn, for the 3rd night, and watched Alvin and the Chipmonks. His Ativan wean today went well so if he can still do well with it he only has tomorrow on it then they will stop it Tuesday and if he tolerates it okay then he will get discharged! I am trying to not get my hopes up but I can't help it.  I am ready to sleep in a real bed, not a hospital bed with him, and to take a real shower.  But what I am the most ready for is to be one step closer to going back home and having our family under one roof.

 

Mason loves to go find Tug.  It is a robot train that delivers patient food to the different floors.  It rides the elevator and everything by itself.  It is for sure one of Mason's favorite things at the hospital.

 

Chips and Dip for the Super Bowl

 

Right after he fell and hit his head.  He wanted to make sure it wasn't bleeding and I didn't have mirror so he looked at his head through the camera on my phone.  I love his little face, even when it is a little sad.

 



Eating his popcorn and M&M's before bed

 



Out like a light and pink as can be

<3

 

Post Op Day 11

Yesterday was kind of crazy so sleep overtook a blog post.  Mason had a good yesterday and even got a little bit silly. He threw up after his morning meds and then again after his afternoon meds so they started him on an antacid to see if that would help.  Right before lunch his nurse came in and told us that they needed to put Mason in a different room.  He was in a private room and they needed the room he was in for a baby coming from the ICU on contact precautions so Mason had to move to a shared room.  He cried that he didn't want to switch rooms, change is really hard for him here.  The room we got moved into has another 3 year old little boy in it.  It is a hard adjustment to have other people in the room with us and it made the space we have a lot smaller.  He was up pretty late last night because they were awake so he just laid awake for a few hours listening to him so by the time he fell asleep I was beat and followed him into sleep. Single rooms are much better but we were pretty lucky to have a single room as long as we did without getting moved. He also got some great visitors our cousins Sonny and Jess came and it was so nice to have them here and that they brought some prizes with them, he was getting tired but I know that he fully enjoyed having Sonny to talk to and be around.  His medication weans are still going good and if he stays on track with the weaning off the Ativan then fingers crossed there is a possibility he could get discharged on TUESDAY!!!! He can do the Methadone wean after discharge but has to be off the Ativan.  They originally said that they would like us to stay in Boston for 2-3 MONTHS after he is discharged and then have a heart cath before we come home but they are very pleased with him and feel comfortable with us coming home 3ish weeks after discharge then he will have to come back in April or May for a heart cath to take care of more collaterals and for some ballooning of the pulmonary artery because there has been some narrowing in the area that Dr. Emani reconstructed in surgery.  Zac and Ryder are hopefully coming back this week and then my mom and Ryder will fly back after a few days.  I can't wait to see my boys! I will be sad to see my mom go too though, she has been so great to sit in Mason's room all day everyday with me so I have some company and am not alone.  Please keep Mason in your prayers that he can keep tolerating the changes being made with his meds so we can be one step closer to going home. <3

 

He loved getting a package with a heart hug and a bunch of other fun stuff in it from our dear heart friends in Utah. 

 

Painting his Spiderman picture from his package.

 

Being silly on his walk

 

A heart to heart between Sonny and Mason

 

Cuddled with his heart hug for bedtime



Post Op Day 10

Today was filled with more smiles from Mason.  He still isn't near back to his personality but I will take the smiles I can get.  He started this morning with 7 meds and kept them all down, thank goodness! He had a chest xray, got dressed and then we went to the playroom.  After the playroom I made special arrangements to go to the parent resource center to go see one of the therapy dogs before it went to visit one of the outpatient floors here.  Mason was so happy to see  a dog and to talk about his dog.  He was so happy that he actually let me take a picture of him willingly! After that we had to wait around because Mason was scheduled for an echo but we didn't have a time of when.  So he played a little more in the play room and then started to get really tired.  He came back to his room ate a little more than he did yesterday then fell asleep.  Of course right after he fell asleep echo showed up. They brought a portable echo so he didn't have to go to the echo lab and I was sure it was going to be a screaming fight.  I am thankful for the tender mercy that Mason stayed asleep the whole entire time! No sedation medicine just a nap, it was amazingly perfect.  It was so great to see his full heart pumping strong on the screen.  I was a little nervous to get the results from it and didn't expect to hear until Monday about them but I got an email from his cardiologist who is out sick and everything looked great! He does have some pulmonary narrowing but she said it isn't an immediate worry AT ALL.  She also said that her and Dr. Emani still want Mason to have a cath in a few months(right around the time we would go back to Utah).  I am hoping that the "few months" was meant to say a few weeks but I guess I will find out more when she is back on Monday.  I am so relieved knowing that the conversion worked and that Mason's full heart is confirmed a success in his post op echo.  Although we are looking at another 6 days in the hospital, I couldn't feel more blessed.  Blessed to have an uneventful recovery, blessed to have amazing doctors, blessed for so many things, but most importantly blessed that Mason has a full functioning heart.

 

 Mason happy to be with Cody the dog

 

 Mason, Jakari, and Maddox playing trains together in the play room

 

Cruisin' the halls before his friend Jakari got discharged

 

The amazing sleeping echo with great results



Post Op Day 9

Post op day 9 seemed like it was going to be a repeat of yesterday.  Mason woke up crying and not wanting anyone to talk or look at him.  After his morning meds he had to go to chest xray and he was sad the whole time.  We came back to his room and my mom had gotten here along with his breakfast.  He ate a little then was sad again and wanted to go to the play room.  We went to the playroom and it didn't last very long.  Then he had a positive moment.  The clowns came to the floor, he visited with them and even got a cute clown nose! We then got to go down to the patient entertainment center and do a fun art project.  A company came in and we got to color a valentine type picture that they are making into cards to sell in the gift shop here, then also with the pictures we drew they scanned them into a computer and printed them on a sugar cookie for us to keep.  I was so happy to make one for Ryder, I miss him and Zac like crazy! We came back to Mason's room after that and he got his pacer wires out.  It was naptime after that and he woke up like a bear.  It is so heart wrenching not being able to make him happy.  Then we got a little glisten of happiness. The sweetest aid came in and had a dance party with him.  He got some glowsticks from the treasure box and has some bongos in his room so we turned off the lights and I played the bongos with the light sticks as Ryan(the aid) held him and danced.  It was such a thing this mom needed to see today.  He got sad after that again but went to bed happy.  I told his nurse we were going to have a movie party and she said she would let him be as soon as he took his 8pm meds until midnight when his next meds are due.  So he helped me pop popcorn, we poured M&M's in the popcorn, put his Monsters University pajamas on, poured some pop and turned on Monsters U.  He was so happy to have a movie night with just me and him.  I am glad he went to bed happy.  Tomorrow in the morning he gets to go see some therapy dogs so hopefully that will start his day out on a positive note. 

 

 

This is how the day started :(

 

Happy to show off his clown nose

 

On vacation with his new clown friends

 

Mason and his cookie

 

My cookie for Ryder, Mason's cookie, my mom's cookie

 

Glow stick bongo playing

 

So happy for a "normal like" movie night!