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!

 

 



Post Op Day 8

Today was post op day 8.  I still can't believe my baby's heart is now whole, it is a big concept for me to grasp.  I stare at his numbers all day in awe, modern medicine and the human body are pretty amazing.  Today Mason had a great day medically.  There was no changes made as far as putting him closer to discharge but I will take that over back steps any day.  Today emotionally has been a different story, he was really sad and quiet today.  He asked about Ryder and at one point told me he wanted to go home.  We have been in Boston for 19 days and I think being homesick is kicking in.  Every time a nurse walks in he cries, he doesn't have any pokies or treatments in his room so he isn't crying because of that I think he is crying because he is confused and they are strangers.  His ICU nurse came in tonight to visit him and he actually talked to her which is more than he has done with the other nurses on this unit.  He spent a good portion of the day in the play room.  He can't stand by himself yet so he would try to walk and play but then be tired and so we brought toys and art to the table so he could sit and enjoy being out of his room.  With him having a hard day has made it a hard day for me also.  There is no doubt I get my strength from my kids.  They make me want to be strong so when they are sad and confused and there is nothing I can do, it makes me feel sad and confused with them.  So instead of laying next to him crying, which is what I feel like doing,  I try to keep him mind busy and try to make him laugh.  So far today there was maybe one or two times that he smiled a real smile so tomorrow my goal is to get more of the real smiles from him.  Hopefully tomorrow things will start looking up for him personality wise.  His cousins are coming to visit and I think that might be a good medicine for him to have some family and kids to entertain him. 

 

Today was a I don't want to take a picture or smile kind of day

 

His art work from the play room

 

How he felt about toay, even after building this big tower

 

He is dressed like Hulk but not feeing quite Hulk like today



Post Op Day 7

Mason keeps making amazing progress everyday! Through last night and this morning he was able to come off some meds that were keeping him in the ICU.  He walked a few steps which was a big deal.  It made him tired but he got to pick a prize out of the treasure box for being so brave and strong.  Most of the people in the ICU knew Mason and would wave and tell him how great he was on wagon rides around the unit.  Since he was doing so good he got released to the step down unit this afternoon!  It is such an exciting step but going from the ICU is hard.  I always hate it going from one on one care to one nurse having 5 patients.  Also there is something so great about the ICU nurses here, they made Mason feel so loved and were always building him up telling him how great he is.  His nurses today made him an honorary doctor and were trying to talk him to going to live at their houses.  He smiled but said he wanted to stay with mommy.  When his two nurses wheeled him over to the step down unit and left, he cried.  He didn't want a new nurse or a new room, he wanted his nurses and his room.  It was so sweet but sad at the same time.  The nurses told him they would come visit tomorrow and I am sure they will love that he cried to go back.  When he got semi settled I carried him to the playroom to pick out a movie and a car to ride in.  We spent most the night on a walk with him riding in his new red car, he would sleep in it if I would let him.  We got to Facetime Zac and Ryder tonight,  it made me so so homesick for them.  They are doing great without us but I know they miss us too and it will be a great day when we are all home together.  Mason is still on 4 IV medications and isn't eating yet.  When he can get off the IV medications and start eating again then they will start taking the discharge plan, but they don't expect that to happen for awhile still.  He is now able to take 5 meds orally so that is positive and his body responds well to those.  I saw glimpses of his personality today and I know everyday I will see more and more.  We already have a play date planned tomorrow with some friends in the playroom so hopefully being up and out will help him get stronger.  One thing I forgot to post about last night was how much I absolutely love his surgeon.  When he came to see how he was doing he kneeled down to Mason's level and said "Mason you are such a good boy.  You are so strong and brave, I am so proud of you."  He is such an genuine guy and I will forever be grateful to him!

 

 It's a double thumbs up kind of day

 

This is seriously an amazing picture.  I never thought I would ever ever see Mason's oxygen 100%.  Before his surgery he was at 78%.  This is even on room air, no oxygen for this little guy!

 



His first car ride of the night

 

We did bedtime sillies before he went to sleep tonight

 

All tucked in with his friends

Post Op Day 6

Day 6 has been a busy day!  Today Mason's breathing tube came out, his arterial line came out,  and his chest tubes came out.  Things got sped along by his fighter personality.  He literally wanted and was trying his hardest to rip it all out so they trialed him and he did good so out it came.  He is super weak and up until tonight didn't talk.  Talking wears him right out.  He will say a few things then he is beat.  He also sat propped up in a chair for a bit today and also went on a little wagon ride.  They are still trying to balance out his meds.  He is now going to med withdrawls and that is hard to see him go through, especially when he can't even fight them and just lays in bed twitching.  They started him on some meds to help with that and the 30 mins before he can have the meds to counteract the withdrawls he is miserable.  He got to have more fluid today so that made his eyes look so much better.  He has ordered food but has a bite then spits it out, it is a step though to get him back eating.  He still has along ways to come but is making steps in the right direction.  I can't wait for him to have his voice and strength back.  I sure do love this little guy!

Right after the breathing tube came out

 

 

One of our very favorite nurses Ashley.  She has been his nurse every day except for one since he has been here. She is the best.

 

 

 



Post Op Day 5

A lot of good progress has been made today.  Mason was awake most the day, up until this evening he was pretty confused and seemed a little uncomfortable but tonight he started to be a little happier. What changed was he got to brush his teeth with a mouth sponge.  He grabbed it right out of my hand and started scrubbing away, he loved it and I loved seeing him happier.  He is still has a breathing tube so that is bothering him.  He gets confused when he goes to talk and no sound comes out.  He is still sedated but today he went from 2 sedation meds to only 1. He also got his ventilator(breathing tube) settings turned down.  The biggest success today was that he got his Left Atrial line out.  That was a line going straight into his heart that measured the pressure of the left ventricle.  His pressures were really good today so as of right now there isn't a plan for a cath, YAY! Dr. Emani said it still isn't off the table but it isn't in the immediate plans as long as Mason continues to progress nicely. As I was writing all of this the team came to do rounds,  they are going to do a trial in the early hours of the morning to see if Mason can breath on his own and have his blood gas levels stay good.  If that can happen then it will most likely he could get his breathing tube out tomorrow, I can't wait to hear his sweet voice again.  While they were rounding he decided that he was irritated.  He didn't cry but he was grabbing everything he could to try to hurry and pull it out, so needless to say his arm restrains are now tighter so he can't reach anything and cause harm.  I am so impressed at how great he is.  Besides being irritated he waves at the nurses, after they do things for him(even if it something he doesn't like) he gives them a thumbs up.  He is so dang strong and is being so so good for a 3 year old in the hospital.  Another thing that was good today is that he pooped, poop is a big deal after surgery so really he is moving forward very nicely!

Zac and Ryder flew home today.  It was very very sad to see them go and I already miss them like crazy.  Their flights went good, their bags made it with them, and they made it to Logan safely. 

I have the worst brain fog right now and am on auto pilot mode so if things don't make sense that is why.  Prayers for a good night and a good day tomorrow.

 Wide awake and the first attempt at smiling

(they have him "dried out" aka dehydrated that is why his eyes look like this

 

Chillin' watching TV



Post Op Day 4

Mason is now 4 days post surgery. When doing his pictures today I was putting day 3 on all of them.  Days sure do run together in here.  Today started as a really good day.  Numbers were great.  The only thing that was off was his fluid balance.  He was retaining more than he was peeing and when the did a bladder scan his bladder was still full after peeing so they had to put his catheter back in.  He opened his eyes a lot to day and even mouthed words like hi, mommy, and ouch.  The first person he opened his eyes for was Ryder.  That made Ryder really happy and it made him not want to leave Mason's room.  He is such a good and attentive big brother.  As the night got closer numbers started to jump around again.  We got a new nurse for the night and she isn't as proactive as the other nurses have been so that is being hard on me.  He got a fever again, his left pressure is high, and he seems uncomfortable.  She just moseys around like it isn't a problem. She also doesn't talk to him.  I already can't wait until morning and hope that a different style nurse put us back.  She is nice and I am sure a great nurse but she is different than the others have been with Mason.  Problem is that she is back again tomorrow night and will most likely be his nurse again.  They don't let you request nurses here or say you don't want one, it is kind of a hard thing to deal with.  Phew, now that I got that off my chest I am thankful that she is here to take care of him even if I don't like her style. 

Zac and Ryder are leaving tomorrow.  I am super sad that they have to go home. It makes me cry to think about.  It is going to be hard having our family so far apart and not knowing for how long.  Hopefully they will come back soon and visit.  My mom is staying here with me though, thank goodness! 

So in a nutshell today was kind of a hang out day with as far as care wise he didn't take any steps forward but more importantly he didn't take any steps back.  He is a fighter and I am glad he is mine.

 

So good to see his eyes!

 

 Not ready to leave

 

 Watching Disney together

 

There isn't a bond better than the one that brothers share

Post Op Day 3

Third days a charm? 

Today started out kinda rough.  His numbers were all really high, he still was needing the cooling blanket, and it looked as if it would be another day of just waiting.  That is until the nurse, nurse practitioner, and the attending physician all talked.  We were given a super team today.  They started 3 new meds, gave Mason a blood transfusion, and watched everything super close.  The result was magic!  His numbers all came down, they took him off the cooling blanket and he kept his fever down, after seeing his temperature was staying normal,  HE CAME OFF PERALYSIS!  They did start him on more sedation but my baby can move!  His nurse tells him before she does anything always and she was getting ready to lay the head of his bed down and she told him and he nodded his head yes! So I stood up and talked to him and he nodded his head again!  My heart melted a little.  He didn't open his eyes but it was such a great moment for my heart.  I needed that today!  He also got a feeding tube today to put a little in his belly to activate the healthy flora in his belly.  He is getting some pediasure at a very slow rate(2tsp in an 4 hour time period, or close to) but little progress is worth celebrating!  I came to the patient family housing to stay with Ryder and I just called Zac and they now took his catheter out and are letting him pee into a diaper now because they want to limit infection risks.  I am so glad that they day that I thought was going to be rough turned out to be the best one so far.  There is still alot of recovery to do but today there was finally some progress.

 

 Third day of post op

 

I finally have a pink baby! His oxygen always was between 77 and 82 and his levels are now at 100%,  pink is a good color on him!



Post Op Day 2

Today was the second day after surgery.  Nothing has really changed since yesterday as far as where Mason is and what they are doing.  He does have a fever now so they had to add some meds and they just turned the cooling blanket down to 29.6 degrees Celsius to see if that would help bring it down.  If it his temperature continues to stay elevated the next step they will do is put ice on his head and body to try to cool him down that way along with the meds and cooling blanket.  It is a minute to minute balancing act.  Since he now has the fever there is no talk in moving forward on trying to wake him up.  Dr. Emani said it could be days, depending on what his temperature does, before they even start talking about it.  For the most part his numbers have been stable today, minus a few times where they went high, so that is a great thing.  Mason's nurses love him, especially his hair.  I wish they could meet his personality, they would love him even more!  Today reality hit in for me.  They have told us the whole time this will be a long recovery, plan on being in Boston for 8-12 weeks, stuff like that.  I have told people that but today I realized that is likely a reality.  Mason is in the best hands possible though so it is worth it.  Although we aren't moving forward, and Mason has a fever he hasn't had any major set backs so that is what is most important.  His body and heart is getting the rest that they need for optimum healing which will be beneficial when he does wake up.  So for now we still just wait.

Post Op Day 1

Today was post op day 1.  When the surgeon came in he said Mason's numbers were still higher than he would like so there was no plan to even try to come off sedation.  He started up a few different meds hoping that they would help and all day the numbers keep shooting up so they have to keep putting him farther under.  They really go up when I touch him or talk to him so I have to refrain from that.  It is kind of a helpless feeling not to be able to do anything but I will do whatever makes him in the best state to recover in.  Also with how his numbers have been I am not going to be surprised if tomorrow the surgeon decides Mason needs to go back to the cath lab to have more collaterals coiled in his heart.  They still have him on the cooling blanket.  They are keeping his temperature at 35.5 degrees Celsius(95.9 Fahrenheit), it makes me want to wrap him up in a blanket.  He had a few eventful moments today also.  His ventilator stopped working TWICE! The first time the nurse wasn't in the room and all the sudden the ventilator stopped and I looked at Mason's chest and there was no breathing.  It scared me.  The nurse came in and started to bag him while respiratory messed with the ventilator.  Everything was fine and then it happened again this evening.  So they had to bag him again and send for a new ventilator.  He cannot breath at all on his own yet so it put a little panic into me but all is well since.  Overall they are pleased with him but are not in any sort of hurry to pull him out of it.  If slow and steady is what it takes, we will be patient.  We are used to Mason just fly right through recovery but this time it is very different because they want it to be slow so we have to just keep positive and know that time is important with this surgery. 

Ryder had a good day today too.  I still can't get over how AMAZING he was yesterday during surgery.  He sat in a very boring waiting room for over 9 hours and didn't even complain.  He is growing up and is such a good brother.  Because of the long day yesterday he didn't really care to sit at the hospital so my mom brought him down for a few hours so they could visit him and then we all went back up to the Yawkey house to eat some dinner.  We got to play Monopoly Jr with Ryder before we walked back to the hospital. Zac's parents sat with Mason so that made me feel a little better being gone knowing Mason wasn't alone.  I am going to miss Ryder so much when he goes home soon, but he will enjoy being back at school with his friends. 

Mason is still very critical and has a long road of recovery so keep the love, positivity, and prayers coming.  They are not going unnoticed. <3

I have gone back and fourth on posting pictures of Mason with all his wires and tubes.  I decided tonight that I am okay with posting them on here.  Pictures like this get stolen too often by the wrong people and then they use them to get money from others.  I don't want to be a target so I am going watermark any pictures like this to try to avoid that happening.

 

 

 

<3

 



A Full Heart

There is the phrase of hearts being full, today Mason's is just that, but not as a phrase.  I have not wrapped my mind around the idea yet but I am over the moon with the idea.  The surgeon said he has a full, functioning heart. Amazing doesn't even begin to describe the advances and technology behind that.  We were pointed in this direction a year ago and I know there isn't a place I would rather be from a facility stand point.  Dr. Emani said surgery went very good, he did a lot of work and is please with it all.  He did say that Mason still has a lot of collateral vessels in his heart and are not working in his favor, this concerns him.  The next few days are very critical and they will watch everything very close, if he stays concerned they will take him back to the cath lab and coil them off.  They will keep him completely paralyzed and sedated for awhile while his body adjusts to normal flow.  He will have a long recovery but ultimately only good results are expected.  It is crazy, I feel more emotional now than I have all day.  It is almost like the relief of joy after a day of waiting.   January 21, 2014 Mason went from "half a heart" to a "full heart".

Another Surgical Update

We just got another update from the nurse and hopefully the next will be from Dr. Emani! Mason is off the heart lung bypass. They do some testing to check the heart before they take them off and he passed all of those so that is great news! The doctor will close his chest now and then come out and talk to us.  The nurse said it will probably be another hour before he comes out.  After he talks to us we are looking at another 1-2 hours until they get him settled in his CICU room and we can go back and see him.  I hate seeing him covered in wires and tubes and a breathing tube but at the same time I love seeing him.  A piece of my heart is missing without my little sidekick next to me.  I think we are all anxious to see him.  I might to be able to update again until tonight when I go to bed depending on how it goes and how soon we can go wait to go see him upstairs.  Today has been a hard but at the same time great day.  Hopefully the next update will say my baby's half a heart is finally whole. <3

Another Update

The nurse just stopped by.  They are still doing the repair, she asked when she called into the OR if it was almost done, halfway done, or if they had an idea of when they would be finishing up, they told her they didn't have an answer but he is still doing good! As long as he is doing good we can't complain.  I am glad they take their time and give Mason all the time that he needs.  We are in a good place.  Ryder has been a trooper this whole time! It has been 7 hours and he just now said he is getting bored, what a great brother! We just finished a game of Apples to Apples and I am sure a game of Uno will be in our near future! Keep the prayers coming, they are helping.  We have been calm and the time has been going smoothly. <3

Surgery Update

We just got the third update for Mason.  The first two updates were small so I figured I would condense them.  The first update was just to update us telling us all lines were in and they were going to start the first incision.  The second update was that they were getting through scar tissue. This update we just got was that he is now on bypass and Emani will start the repair.  It took almost 4 hours to get him on the heart lung bypass machine by the time they got through all the scar tissue.  We will get the next update around 2pm(Boston time).  Everything is going as planned which is always a good thing to hear.  

Today is the day

Today is surgery day. 

We had a fun weekend together.  Saturday was Ryder's 7th birthday. He wanted to go to the New England Aquarium for it and he had a lot of fun seeing the fish and spending time with family.  Sunday we moved from the hotel to patient family housing, it is the nice beautiful home in Brookline that has been redone to house families at Boston Children's.  The kids have loved it because there is more room than the hotel and more importantly there is a Wii.  Sunday night while the kids were playing the Wii an employee asked if we would like to go to a Bruins hockey game, we of course said yes.  So on Monday we went to the Garden Arena and the tickets were in an Executive Suite donated by a Boston Bruins player Marc Savard.  It was fun to watch the game from the suite and the boys obviously loved the game.  It was a good way to spend the day before surgery.  When we got back to the house we played Uno and Apples to Apples as a family,  Mason doesn't get the concepts of the games but loves that he can play by himself. 

Now to today.  We woke up at 4:30am to get ready to come to the hospital.  Mason was pretty grumpy to be up that early.  He wasn't very happy to be going to the doctor again, especially for surgery.  It took quite awhile for them to call us back to pre op when we got here and when they did we still had to wait until 8:30 because we hadn't signed consent and his surgeon was in a weekly meeting until then, so Mason played with stickers and watched Mickey to pass the time.  Once the surgeon came and we signed consent it was go time.  Mason knew and he started to cry.  When they started to prep his arm for a shot of sedation he started to scream, he remembered that shot from his cath.  It took everything I had to not cry and stay brave for him.  A few seconds after the shot it went from screaming to silence and then the hustle of the nurses and doctors to take him back.  Once he fell asleep that is when my emotions went.  When he was a baby he didn't notice when I cried or when I was scared, but now that he is older he gets it.  I have to put of a brave face a lot more often so he can also be brave and not scared.  I wish he didn't have to go through this, but he is a fighter and he is strong.  I am lucky to have his strength for my example.  He has taught me a lot about endurance, even when I don't want to.  Our first update most likely wont come until 2 hours after going back so we wont get that until around 11.  It will be roughly 8 hours so Ryder is going to bring his Uno and Apples to Apples to the hospital and play with us while we wait.  I will try to update when the update us. 

 

 Ryder and Mason after the Bruins game

 

 Stickers

 

 <3



Surgery is Rescheduled

Mason got discharged from the hospital yesterday morning right after breakfast.  We were given instructions for surgery Friday.  He was going to be first case so we were going to have him at the hospital at 6am tomorrow.  Zac's parents flew in last night to be here for surgery and today the plan was to head into the city and show them some of our favorite places.  As we were all getting ready this morning I got a call from the surgery scheduler.  Dr. Emani had an emergency case come up and needs to do surgery for that child tomorrow first case.  They had to change Mason's surgery to Tuesday first case.  It is kind of a bummer for the fact of flights home for Zac, Ryder, and Zac's parents had to be rescheduled and that puts us being away from home that much longer but I am glad that we are not the poor family having to go into an emergency surgery.  Mason is stable and is able to have surgery later so I have to focus on that side of things.  I pray that everything works out for that family.  So now surgery is Tuesday, January 21st at 7:30am(eastern time).  I am thankful rescheduling the flights didn't turn out too stressful and that we were able to have a great day out today as one big happy family. 

Cath and MRI Results

We got to see Mason around 5 hours after we left him.  They called with hourly updates which is always nice.  When he was done his cardiologist came in and went over the results with us.  She started by telling us he did really good and all the measurements were where they love to have them.  Just as the echo showed his left ventricle is normal size, music to our ears.  Then she went on to tell us that the left pressure in his heart is a little higher than she likes to see, it isn't alarming but something to watch.  It is at a 12 and ideal would be around 7 or 8.  If it gets higher after surgery, which is a pretty high possibility due to his heart taking more flow, then it can be managed by meds but should be watched closely.  Other than the pressure being slightly elevated with his increased measurements he is in the perfect category for the Biventricular Repair, the repair that will take his half a heart to a whole one. She said she has only good expectations for Mason's recovery.  They had to coil(occlude) some collaterals(new formed vessels in the heart that shouldn't be here and compete with the ones that are supposed to be there) in his heart.  They had to do this last time also so it was nothing new.  With the length of the procedures done and with the coiling he has to stay the night in the hospital tonight.  He isn't very happy about it.  He is pretty puffy in the face from the fluids given and having to lay flat for 6 hours after his cath, which he did amazing at and didn't complain once about having to lay flat that long.  When we got to the floor where we are sleeping tonight and he was able to get up the first place the sent him is to get a chest xray.  He sat still for them to get the pictures and then we took him on a walk in a little car as a reward for being so good.  He had to have an extra pokey tonight to check his hematocrit, blood levels, to make sure he didn't loose any blood during the procedures.  He got to pick out a prize for letting them draw his blood and got to go on another walk in his car.  Surgery is scheduled for 7:30am Friday morning.  The surgeon should be in tomorrow to sign consents and go over the surgery with us.  Thursday he gets the day off from the hospital and doctors which will be nice to spend time together the day before surgery.  Like always everyone is in love with Mason and nurses who aren't even his come by to tell him hi and see how cute he is.  His doctor came back after she left to tell us how big of a fan club he has with all the nurses.  He is a very loved kid.

 

 Right after the cath, he was still kind of out of it

 

 Sleepy boy trying to smile

 

 His first walk in the car, You can see how puffy he is in this pic

 

 Taking Blankie and Aggie for a car ride

 

This picture is "worth a thousand words" as said by his cardiologist when she emailed it to me.  His left ventricle growth is so great.  The bottom diamond was before his surgery in June, Second one was a week after his June surgery, and the top red one is how much big it is now.  It has essentially tripled in size!

His Chest xray

all the little spirals are the coils and the round circles up the center are sternal wires that the surgeon uses to close his sternum after surgery.  All this stays in his body so he gets cool xrays like this the rest of his life ;)



Cardiac Cath and MRI Day

They took Mason back about 20 minutes ago for his MRI.  We were lucky enough to get the same team of nurses, nurse anesthetist, and anesthesiologist.  They remembered Mason and us.  It is so nice to have familiar faces when sending your baby back without you.  I think Mason kind of remembered the room we were in from June.  He was pretty skeptical as soon as we went back.  He also was pretty grumpy and wanted to eat some Starbursts and didn't think it was nice that we wouldn't let him.  We decided we would have him try to take the sedation medicine by mouth before they took him back to do the IV, that didn't work at all.  It hit his mouth and it came right back out, so they had to give him a shot.  A few minutes after the shot he was out and they started hooking him up to everything.  They were going to do an IV and put in a breathing tube then start the MRI first.  That will take a few hours and then hopefully the cath lab has an open room so he can go straight there after, if not then that will make the day a little longer.  They told us to plan on about 5 hours until we can go see him in recovery.  It is never easy sending kids back without you, no matter what they are having done.  I would think I would be used to sending him back but every time it gets harder and harder.  I guess it is just getting me ready for Friday.  Although it is hard sending him back I feel a sense of peace and calmness, so thanks for all the prayers and positive energy, it is being felt by us here in Boston.  

A Day of Appointments and Good News

Today was the first day Mason had to go to the hospital here in Boston.  We had to have him there at 7:30 (5:30 home time).  We went to the cardiology pre op clinic to get all the required tests done for his cardiac cath and MRI tomorrow.  The first thing they did when we got him checked in was took him into a room and did an EKG and a full set of vitals.  Mason was quite the flirt with the girl getting that information.  Next they sent him to chest xray.  He sat so big and did what they asked while taking the pictures they needed.  We went back to the pre op clinic and met with a nurse practitioner.  She went over all the info for the next day with us and answered any questions we had.  Mason kept telling her about the Aggies and Big Blue, she had no clue what he was talking about but was so cute and kept involved in the conversation.  They wanted to send him for labs next but we knew that once he had a "pokey" it would make his hesitant of everyone the rest of the day so they sent him to echo next.  He has always hated echos and they have always needed to sedate him for them but this time he laid for a whole hour while they got all the info they needed.  I sang him lots of songs and fed him goldfish to keep him entertained and he was a champ the whole time.  After his echo he went and had his labs drawn.  The kid before Mason screamed bloody murder the whole time so that made Mason nervous and as soon and we sat down in the room he got pretty nervous and cried.  When he was done he told me, "pokies make me sad."  They make me sad too for him.  After that we met with more nurses, and a study coordinator. Then we got to see his cardiologist, Dr. Banka. She is the sweetest person ever and was so excited to see and talk to Mason.  She gave us the best news ever.  Mason's echo showed that his left ventricle is NORMAL size! He went from having a small/borderline for surgery left ventricle in June to a full one now.  He still has a single ventricle circulation until after surgery but with this new data and if the results from the procedures tomorrow are like she thinks they will be, Mason should have no problem getting normal, full sized, functioning heart.  We are blessed to have come across this surgery and gone with our hearts in sending his records here.  This is where we are supposed to be.  Medical technology is progressing so fast and I feel lucky to have Mason paving the way for babies with his defect that are being born after him.  It was a long, almost 5 hours, day of appointments but Mason was super as always. 

Tomorrow we check in at 7:30 in the surgical department and they told us to plan on it being another 5 hour day of him being intubated and us waiting in the waiting room.  Waiting is hard but I am so happy to have had such a great day.  I can't wait for more great days like today.

 

 In the words of Mason "I AM A ROBOT" (even in a robot voice)

EKG

 

 

Waiting for chest x ray, nothing but smiles

Waiting for Echo

Our brave little guy and Aggie the monkey getting echos



We made it to Boston!

We arrived to Boston safe last night.  Our day of traveling couldn't have gone better! Our first flight out of Salt Lake at 8am. We had decided before we went we would sit in the very back of the plane so if there were sick people they weren't behind us. We boarded first to Clorox our seats for Mason and then sat down. The flight wasn't a full flight so we had nobody around us at all! It was so nice! Our flight from Chicago to Boston was full but I didn't hear any coughing, so I felt relaxed the whole time. We were greeted at the airport with our family picking us up. It is such a nice thing to see friendly familiar faces when arriving here. They brought us to our hotel next to the hospital and we went down and ate at the food court together.  Ryder and Sonny loved catching up(they are a few years apart) and Mason and Ivan were like little grown ups talking together. My boys sure do love their cousins.  We slept good and will just spend the day getting used to the time change and getting settled.  Thanks for all the continued prayers, love, and support. We couldn't do this with out all the help we have received. Monday the craziness will start so for now we will enjoy the calm. <3

Happy 2014!

A new year, a new adventure.  I cannot complain about 2013 because we were blessed in so many different ways, and I know 2014 will be just as great!  We leave in 9 days to Boston, and I am glad we are.  Mason is showing more signs everyday that his body is ready for the next surgery.  He is a lot more tired, his oxygen keeps dropping down into the 60's, and he just isn't quite as happy as he normally is.  I emailed his Boston cardiologist about the changes and she said good thing surgery is already scheduled or else it would be put on the schedule in a quick hurry.  He isn't needing oxygen all the time, and actually up until today I haven't put it on him at all because when his oxygen drops he usually recovers back in the high 70's on his own within 5 mins.  Today he wasn't recovering so he got to wear it.  At first he was mad at me that I put it on him and within a few minutes he was laughing and running around,  his body could tell the difference having the oxygen on and I could tell it really made him feel better.  He will more than likely get to wear it more often as these next 9 days go by. 

 

We have kept him inside away from other people this last little bit and so far we have all stayed away from the nasty bugs that are going around.  Quarantine is crappy but it pays off to have him healthy and in his best shape going into a major open heart surgery.  For this next week we will enjoy a lot of time with each other watching movies and eating popcorn(one of Mason and Ryder's favorite things to do).  Thanks for all the continued support, the next update will most likely be from Boston!

 Mason aka Hulk rocking his oxygen this morning