Happy 4th Birthday, Mason!!!

Yesterday was Mason's 4th Birthday.  Wow, time flies!  Mason is doing really good.  He has another checkup at the cardiologist on May 15th for the official report.  Mason is full of energy and a lot of spunk!  So much that there are days, I don't think I have the energy or the patience to keep up with him.  We have signed him up for preschool in the fall and I am so worried.  He is not the best at following directions.  I took him to an open house at the school where the kids get to spend a few minutes in each classroom.  He did okay.  He wasn't the worse kid in the room and he wasn't the best either.  There is so much more to come for this little guy and I am so proud of him.

As I sit here thinking back 4 years ago, today is the day that changed our lives.  Although his birthday is so special and reminds us to celebrate how far he has come, today is an equally important day.  Four years ago today, Mason was diagnosed with Hypoplastic Left Heart Syndrome.  Looking back I think I knew deep down inside that something wasn't right - call it mother's intuition.  I couldn't get him to eat much and he was sleeping a lot.  Everyone commented on what a good baby he was but it just didn't feel right to me.  I even commented to the nurse and she reassured me that there was nothing to worry about.  The day we were to be released the pediatrician came in to check him out.  She said she heard a heart murmur and it was pretty loud so she ordered an echo.  After the echo, the cardiologist sat us down and drew a picture of a normal heart and then drew a picture of Mason's heart.  She said and I will never forget it "He has Hypoplastic Left Heart Syndrome.  You have two options:  1 - Go to Michigan for a series of 3 operations over the next few years or 2 - Go to Denver for a heart transplant."  My first thoughts were "This is bad, very bad.  How could my perfect baby have such a broken heart that he could possibly need a new one?"  This day changed me forever.  I could have never predicted the trials and triumphs this little guy would face.  He amazes me everyday with his strength.

This day not only changed the path of Mason's life but opened my eyes to a world I didn't even know existed.  As I would soon find out, I was now a "Heart Mom".  I have met so many people that have truly changed my life:

Janel Lentine, we met the day both our little ones were having their first surgeries.  We were the only ones in the waiting room that early in the morning.  Little did I know that day how much we would lean on each other during that first long stay at Mott.  I don't know what I  would have done without you.  You and your family will always have a special place in my heart.

Karin Prutiny, you amaze me!  I will never forget when you approached me in the hallway while we were pacing the floor.  Mason was in surgery and was having uncontrolled bleeding and couldn't come off bypass.  You walked up to me and asked if there was anything you could do.  Little did I know that your daughter had heart surgery as well but you took to time to help me.  You listened and then you hopped on your blog and asked all of your followers to pray for Mason.  You will never know how much that meant to me. 

And our families, wow, where do I start?  The day Mason was flown to Michigan, members of our families got in cars and flew on planes to help us.  I have always been close with my family but this experience has shown me how important you all are.  Whether it was coming to visit, sending care packages or sending prayers, you all have been there for us when we needed you most.  A special Thank You to my mom for staying with us in Michigan as long as you could and flying up at a moments notice when things just got too tough and I needed my Mommy.  Another Thank You to Randy's mom, Phyllis Slater, who quit her job to stay home with Mason and care for him while Randy and I returned to work and tried to create some since of normalcy.

So, these past few years have been a roller coaster of emotions but looking back it has taught me so much.  Thank you all for being a part of it.  Can't see what the next year has in store for us!!!!

Amy

HAPPY BIRTHDAY MASON!!!!!!!

Going on 3!!!!!

As always another late update to the blog!  This one comes with good timing, however.  Mason's 3rd birthday is this Sunday (Easter)!  It's hard to believe he will be 3 years old!  Old enough we need to start thinking about pre-school next year!  Which concerns us a bit given Mason's inner "wild child".  We expect a phone call or twenty from the school! You need to break the wild stallion at some point we guess......

Mason continues to amaze us each and every day.  He is still a big fan of Handy Manny (as you can see to the left).  Loves M&M's.  Loves going to the park.  Loves being rambunctious. All-in-all he is a seemingly normal 3 year-old boy which at this point is all we could ask for (thanks everyone).  We have a big birthday party planned this weekend featuring Handy Manny!

The only big plans we have for this summer is going to Kansas City for a few days so the kids can enjoy Great Wolf Lodge.  This will be the first summer in 3 years we don't plan to spend our vacation time in Michigan (knock on wood!).  Expect another update soon!

Mason, Mia, Amy, and Randy

New Year Post!

2011 was without a doubt a great year for us and Mason. Mason joined the rest of us and started eating food by mouth in early 2011 (it hasn't been quite a year!). He underwent the Fontan procedure over the summer (surgery #3 of 3). Started taking all of his meds by mouth this past fall and had his G-Tube successfully removed by Dr. Mom this past winter. All milestones in-and-of-themselves. In the meantime he has developed into a loving, energetic (hard to believe), and ORNARY little boy. At any one time Mason has at least half-a-dozen bruises on himself. The kid has no fear.

Through all of this he has developed into a little boy who looks absolutely nothing like me. I would be concerned about this but he does love the Jayhawks and the Chiefs, and oh yeah me, so I will accept him no matter what he looks like. Kind of like how Amy has accepted me. ; ) Looks aside it is still amazing how far he has come, and others like him. I was going through the camera tonight, looking at some older photos, and to see how much he has grown and developed over the past 2+ years is truly amazing. We are blessed and Mason is a blessing. As a father of a heart baby I just hope Mason and every kid like him will always have access to the wonderful thing we have here in America, and that is our healthcare system.

The one "challenge" we have ahead of us is getting Mason off of his Viagra. We had a plan coming back from Michigan this last time, decided to wait several months to make sure he is stable at the recommendation of his cardiologist here in Wichita, and now she won't commit to anything. So second opinions here we come. It's always something! His pneumonia seems to be behind him so we are thankful for that.

Mason playing in his toy grill he got for xmas

The kids at Xmas and their stash

Mason chomping down on a cupcake at Sissy's birthday party

Mason showing off his beach body!

A special bond

Coughing and more coughing

So, Mason got a cold just a couple of days before Thanksgiving just like the rest of us. But Mason's has never gone away unlike the rest of us. Two weeks ago we took him to the doctor who listened to him and asked all the questions. He thought Mason just had an upper respiratory infection and said to let him know if it didn't get any better. Another week passes and he still has a cough. The doctor requested that we come in and do an x-ray. What he found on the x-ray surprised him and us - pneumonia. Mason was put on an antibiotic but it did not make a difference. The crazy thing about all of this is that, other than the cough, this has not affected Mason at all. He is still full of energy and is being a typical 2 year old little boy.

So, back to the doctor's office we go today. The doctor listened to him and again Mason sounded clear. Mason's oxygen saturation was 95% today which is the highest that we have seen it so far! This cough does not seem to be affecting it at all. Now we are trying breathing treatments to figure out whether this could be asthma. Randy and I were concerned that this could be heart related but the doctor assured us that he did not see any indications on the x-ray that would lead us to believe that he is in heart failure. He did have any echo 3 days before Thanksgiving and all look the same as it had in the past. So, that put us more at ease. But we still have no idea what is causing his cough.

I am asking that you send your thoughts and prayers that the doctor can figure out what is causing the cough. Or better yet that the cough is healed. It would really give me peace of mind to know what is causing it. I know Randy and I have been worried.

On to more positive thoughts, we had a wonderful Christmas. Mia and Mason received exactly what they asked for from Santa although I wonder if Santa was watching close enough because not sure they had been good all year! Hope to get the pictures uploaded on the computer to share soon.

Hope you all had a Merry Christmas and have a Happy New Year!

This just in - MASON'S FEEDING HAS BEEN REMOVED!

I couldn't wait to tell everyone that we just took Mason's tube out! We have been struggling with the decision and had been getting multiple opinions on how to approach this from doctors that we trust. We had decided to go with the "let's just take it out and see" approach. See if it leaks, that is. So, we decided tonight was the night. It went really good and only took 2 minutes including taping a bandage on the site. Now we put him to sleep for the night and see if it leaks when he eats and drinks in the morning. There could be a possibility that he could need a procedure to close it but we are hoping and praying that it will heal on its own. Mason did fabulous. As a matter of fact, seeing Santa tonight was harder than taking out his tube! So, here are the before, during and after pictures. I promise they are not bad.

Before

During (no tears!)

After

I am one proud Momma! I couldn't have asked for it to have gone any better. He is such a brave little boy. As I sit here and type this I have tears in my eyes. He has been through so much and has been so brave. Could I have been as brave? I don't think so. He has taught me so much in his short life. I am blessed!

Please keep Mason in your thoughts and prayers that he tube site heals on its own and won't need any additional attention!

Feed Tube is Coming Out!

Mason's cardiologist appointment was torture for all of us. The results were good but it took all our energy. Mason just wasn't in the mood and pretty much cried for the 2 hours we were there. He was starting a cold and hadn't slept well the night before which means we hadn't slept well the night before either. The good news is Mason's oxygen saturation was 94! This is the highest we have ever seen it and it was while he was crying so it could have been even higher. The echo was pretty much the same. The cardiologist was not ready to make any adjustments to his medications at this time so Randy and I will be doing some research on that before we see her again. His next appointment is in 6 months!

Since that appointment, we have been making some phone calls to a couple GI doctors we have seen over the past year or so. We were trying to get some advice on when to remove Mason's tube and what the after care would be like. After some back and forth phone calls, we have the go ahead to remove it. If it continues to leak, he might need the surgeon to put a "stitch" in it to close it. So, now Randy and I need to decide on the big day. I am so excited for this. Mason is definitely aware of it and it does bother him sometimes. He is also becoming self-conscious about it to the point if his shirt gets pulled up, he will immediately pull it down.

Thanksgiving was a good time. We traveled back to Missouri to see my family even though Randy was not feeling well. He stayed in bed all Thanksgiving Day and did not get the participate in the fun and festivities. He didn't have it all bad - there was lots of football to watch! He did recuperate in time to drive back to Kansas on Sunday and stop at his family's party. It was great to see everyone. We have a lot to be thankful for this year!

Hope you all had a great Thanksgiving as well. Thanks for checking in on us. We will keep you updated on how the feeding tube removal goes. Please keep Mason in your thoughts and prayers that his tube site will heal with little discomfort.

Have a safe and wonderful Christmas. We love you all!

Is it really November?

Just thought I would give an overall update on Mason and Mia.

Mason's Eating and Drinking

He is pretty much eating just about anything. I even got him to try broccoli the other day! His favorite food is cheese. Seriously, it is the first thing he says when he wakes up. He gets out of bed and asks for cheese. And throughout the day, he continues to ask for it even though he knows that he is only allowed that one stick of cheese a day. He also loves the Goldfish crackers. We always leave a few on the edge of the table and he grabs and goes. Mason's drinking is still our challenge. He has made a lot of strides in this area but still has room to improve. Mason will only drink water. We keep track of how much he drinks to make sure he gets the required amount each day. He is now drinking out of a regular cup and holds it all by himself. He is so very proud of himself at this accomplishment. His latest thing is to blow bubbles in his cup instead of drinking it! Mason is also now taking all of his medications by mouth. This was a big acheivement since he hates taking his aspirin. After getting some ideas from a fellow heart mom (thanks, Janel), I changed the flavor and he takes his "vitamin" the same time Sissy takes hers. Success! We are so very proud of him!

Here is Mason drinking out of his big boy cup all by himself! What you don't see is the great big smile on his face when he is done. I'm lovin' it!

Mason's G-Tube

Now that we have made these strides with his eating and drinking, we are hoping we are very close to no longer needing Mason's G-Tube (the tube that is connected to his stomach). Mason had a pediatrician appointment on November 1st and the doctor thinks it is time to get rid of the feeding tube! It would be so great to not have to worry about it anymore. My understanding is that all we have to do is remove the tube (which we are trained to do when we were trained on how to change it) and the hole will grow shut in a matter of hours. Although I am very excited to get rid of it, there is comfort in knowing that we have a way to get food or water in him if he ever needs it like if he were to get sick. We also want to make sure the cardiologist is ok with removing it as well and he has an appointment on the 21st with her. More to come on that one.

Mason's Talking

Just like his eating and drinking, this has also exploded. He repeats EVERYTHING! He can now tell us what he wants which he does with a loud voice every now and then. He can be pretty demanding at times! He can now count to 10 and recognizes some letters. Daddy has even taught him what a Jayhawk is. Mason now requests to wear his Jayhawk shirts when changing his clothes and he has a few of them courtesy of Daddy. Randy is very proud of this latest development.

Mason's Party Tricks

Mason has a few games that we like to show off to our friends and family. This first and, in my opinion the most impressive, is his ability to recognize words. We figured out that Mason was recognizing certain things on the TV like the name of our cable provider. Mason received a Magnadoodle for his birthday (thanks, Aaron, Britian and Kasen). We write words on it and Mason reads them back to us. He knows Mom, Dad, Mason, Sissy, and Cheese among other words. There are also a few words that Mason can even spell for us. I know I am his Mom and am biased but I think that is pretty amazing! Mason also loves to play Hide n Seek. He will stand in the middle of the room, pretend to close his eyes, count to 10 and then come find you. In ususal Mason fashion, his whole entire body lights up with excitement when he finds you. I have spent many of my lunch hours at home playing Hide n Seek. I would give up some food for that any day!

Mason's Behavior

Mason is 2 years old. Need I say more? He can be the sweetest little boy and in the next second be just plain rotten! Seriously, he will just come running in from the other room, grab my arm and give it the biggest hug. He also gets way too much joy from making his sister scream. We have tried to give him time-outs. This has been interesting. He thinks it is a game and even puts himself in time-out. What to do????? He has even started throwing things when he gets mad. If there is nothing in sight to throw, he will go to another room and find the first thing that he can make fly across the room. There are times that I have to hide my smile. It is just too funny!

Mason's Upcoming Appointment

As I mentioned earlier, Mason had a pediatrician appointment to see how he is developing and to get his first RSV shot of the season. We were pleased to find out that Mason had been approved for the Synagis shots again this year. He will receive a shot at the first of each month from November to March to help protect him from RSV. These are very expensive shots so there is an application and approval process. Mason may not think this is a good thing but we have to do what is best for him. Mason's second appointment in November is with the cardiologist. She will be accessing if we can start lowering the medication he was put on for his pulmonary hypertension. Based on the heart cath before his last surgery, his pressures in his lungs are normal. This makes me nervous but it would be nice to get him off another med especially the med that causes us so much trouble with insurance. So, please keep Mason in your thoughts and prayers this next month for a good report.

Mia is now in 1st Grade!

I can not believe I have a 1st grader. We have already been through the first quarter and her grade card was really good. Her favorite subjects are Music, Science and History. And her least favorite are PE (she really doesn't like doing squats!). She also wants me to add that really likes recess as well. Her best grades were in Spelling and Bible Verses - that girl has a great memory! We continue to work on her Reading and Writing. Her grades are pretty good in these areas but have room for improvements. She has started bringing home chapter books from the Library for us to read. It is fun as a parent seeing her learn so many things at such a young age. Amazing!

Mia's the STAR

Mia has a role in her upcoming Christmas program. She is the Star! But we already knew that. She will get to wear a costume and sing a song - at least that is what she is telling us - hard to believe since she inherited her singing abilities from her dad. If you have heard him sing, you know exactly what I mean! :) We are so excited to see her program.

Mia is dancin' and tumblin'

Mia is taking both dance and gymnastics lessons this year. She did dancing for the first time last year and wasn't very excited until the costumes showed up for the recital. And she loved the recital! She is doing a very good job this year and has remember most of the dance steps from last year. The best part is when we get home from dance. She then tries to teach Mason all the moves and Mason loves it. Next thing I hear is both of them running through the house saying "Shuffle Step!" Randy's niece, Kaiti, is taking me to gymnastics after school once a week. She has been a great help to us since she is here in Wichita this year going to college. A few weeks ago I attended Parents Day and was surprised to see how much Mia had learned. It was crazy for me to see her tumbling and swinging on bars. She has come very far in just a short time.

Mia had a tooth pulled!

One of Mia's permanent teeth came in behind her baby tooth so the dentist had to pull the baby tooth. She was very worried about this all the way up to the appointment. I couldn't have asked for the appointment to have gone any better - the gas to get her to relax really did wonders! She was giggling the whole time. The doctor was great and Mia didn't feel a thing. She even said, "That was it?" Getting her flu shot was worse than this! Next year I think I am going to ask for some of that gas for the flu shot.

Well, that is about it for now. I wish I could honestly say that I will try to update more but I just don't see that happening. Life is good and busy!

Thanks for checking in on us and keeping our family in your thoughts and prayers.

Update from Kansas.....Is it really October?

Is it really October? I can't believe it's been almost 2 months since our last update! You will be happy to hear it's been an uneventful 2 months. Actually let me correct myself, it's been an uneventful month-and-a-half. The first week or two back home was a little crazy. Mason was having problems with hives and rashes while he was in the hospital. We figured it was stress and/or anxiety related and that once we got him home it would stop. It didn't stop so we spent the first two weeks at home in and out of the hospital and doctor's office trying to figure out what the problem was. We never did figure out what the problem was, but eventually the hives and rashes stopped. So maybe his body just needed a little more time to calm down. These kids really do go through a lot.

The one good thing that came out of all of that excitement is we discovered he didn't need his blood pressure medication anymore. One less med! He's still on a couple diuretics and Sildenafil, which is the big one. That drug is what got Mason through his last 2 surgeries. They initially took him off of it following this last surgery (Fontan) but after speaking with his surgeon, we all agreed we should put Mason back on it and slowly ween him down. So we are going to slowly ween him down or off of it over the next 9-12 months. Starting next month. So keep Mason in your thoughts and prayers as we go through this. We would really like to get Mason off of this drug without any setbacks or challenges.

That said Mason is doing great today. Don't confuse that with "he is a sweet little angel that never gets into trouble". Actually, it is quite the opposite. He is a typical, ornery little boy. Who thinks putting himself into time-out is all part of the game. He is also a blessing who reminds us each day miracles do happen and that the most important thing in life is to enjoy life. Again thanks for your thoughts and prayers along the way, Mason and many other children like him are proof the thoughts and prayers do work! Now I need to figure out what he did with my car keys!

We are home!

This will be a short post but we are home. Thank you University of Michigan! Thank you friends and family! Thank you Granny and Mamma for being there in Michigan and helping out with Mia and with the chores at the Ronald McDonald house. We couldn't have done it without you. We will use the next couple of days to settle back in at home, rest, eat decent food, and prepare for next week when life returns to 'normal'. Mason is doing well tonight and he has already positioned himself for a good nights sleep. He loves you all and he too says 'thank you'.

Heading Home

Kansas here we come. Mason was discharged this afternoon. We actually won't be leaving Ann Arbor until tomorrow morning, so we won't be home-home until Wednesday at the earliest. Mason is out of the hospital though and that is all that counts!

As always we appreciate all of the love, support, and prayers all of you have given us over the last 2 years. We wouldn't have been able to make it to this point without it. We are also blessed to have Mason. Who through 3 reconstructive heart surgeries, pulmonary hypertension, paralyzed diaphragm, a disease with no cure or prognosis, etc......continues to remind us each day that the most important thing in life is being happy. For today is the most important one off all. Fortunately for all of us Mason's happiness is contagious!

Now we head home and continue to love Mason each and every day and hope that he continues to grow and develop like a normal little boy. Again there is no cure for HLHS nor is there a prognosis. The University of Michigan however has given Mason a chance and that is all we could ask for.

Chest tube free!!!!!

Mason's last chest tube came out today, accidentally, but it is out. They were going to remove it tomorrow morning but little fingers played a role in getting it removed today. So..........He is scheduled for an xray tomorrow and a discharge echo on Monday. If all goes well he will be discharged on Monday. Let's hope that is the case! As mom and dad are getting tired of eating hospital food! Mason as always remains in great spirits. He's even turned into a little ladies man. Handing out hugs to the nurses like candy at Halloween. Who can blame him though, he's too darn cute and he knows the nurses won't say no.

One chest tube out and pink fingernails

One chest tube down, one to go. They pulled one of Mason's last two chest tubes yesterday. Ironically his draining has picked back up so it doesn't look like they will be pulling the other one anytime soon. Or at least not today or tomorrow. His O2 levels look great, however, which is awesome. That can be seen in his pink fingernails. Yes pink fingernails! One thing kids with Mason's condition have is lower O2 levels and with each surgery those levels get a little better and closer to normal. Right now he sitting in the 90 to 92% range. Never has he been that high before and it is good to see a 9 in that first number. Okay back to the wild man. He says bye.

Mason is so close to getting his chest tubes out, and the word "home" was even mentioned the other day, but after a very active day yesterday his draining actually picked back up. So we continue to sit and wait patiently. All the while Mason is turning into a wild man in his crib - especially after last night. He may actually pull the tubes out himself!

Mamma left this morning to go back to Kansas but Granny is flying in today to take her place and help out with Mia. Fortunately for her today is our day off at the Ronald McDonald House. So no chores for Granny today! : ) We hope everything is going well back home. Mason is watching Handy Manny in his crib as we type and talking up a storm. Hopefully the baby next to us is able to sleep through this!

Getting better

Mason continues to get better. At this point he is definitely back to being himself. Which includes melting down any time a doctor or nurse comes around. Needless to say his blood pressure is high anytime they try to take it so mom and dad have stepped in to help out. We are earning honorary nursing degrees as we go through this.

He loves getting out for walks and stroller rides. I think the hospital loves seeing him walk around too because he is so animated. The kid loves exit signs and will point each one out and say "exit sign". He also enjoys the automatic sliding glass doors next to the elevators. He gets so excited when they open up. He does what we like to call the happy feet dance. The walking also helps with his chest tube drainage, which continues to slow down. We are getting close to getting those tubes out. Fingers crossed!

Mason is continuing to get better and as you can see he is up and walking around. He would probably take off running if we let him. We are taking him out for a walk and/or stroller ride a couple times a day. Or as we call it "exit sign world tours" as the kid loves exit signs. His rash is getting better too but its still there and bothering him. All in all he is doing really well. It's great to be able to get him out and about. It helps with both his and our spirits. Now we just need his chest tubes to quit draining before we can go home. It's a waiting game at this point.
Thanks for the continued prayers and support. We feel the love in Ann Arbor.

Out of the ICU!

Mason is out of the ICU! He got his orders to move to the general floor this afternoon. His left lung continues to get stronger and as of this evening his nose is canula free. Hopefully it stays that way. The plan from here forward is to get him stronger and ultimately for the fluid draining from his chest tubes to come to a complete stop. We can't go home until that happens. Unfortunately each kid is different and the draining could last anywhere from days to weeks. They won't pull his chest tubes until he has stopped draining for 24 hours. We don't know if this means anything or not but he isn't draining as much as you would typically see at this point.

One other thing we haven't really discussed is that he has had a bad allergic reaction to something topical. Whether it be the tape they are using for his bandages or the ointments they are using, whatever it is his chest looks horrible. Tonight they put a burn shirt on him to keep him from itching it. Poor kid can't catch a break. He is talking more today and even though papa won't read this he keeps saying he is "papa's boy".

Busy Sunday

Another good night and another good xray this morning. All of this will be followed by what will be a very busy day. They plan to take him off all of his sedation meds today, start feeding him in his stomach (he took care of this himself as you can see above), start him back up on his blood pressure medication, start him back up on his Viagra, and ween him off of the hi flow machine as much as he allows. He is much more alert today and has said a few words. The first being "cheese" after mommy asked him if he was hungry. He is watching tv right as we post this. Let's hope the rest of the day goes as smoothly.

Saturday Update

So far today has been a better day over yesterday. Mason is much more comfortable and is waking up more. Unfortunately his left lung is down even more over yesterday but as long as he holds where he is at he won't need to be reintubated. The plan for today is rest, lots of chest poundings to loosen up junk in his lungs, bringing him down on pain/sedition meds, and removing some of the lines he does not need anymore. It may be baby steps but at least he is moving in the right direction.

Up and down day

Mason is still off the vent but he is needing more assistance than we would like when it comes to breathing. This afternoon they had to put him on a hi-flow machine to get his oxygen levels up. He continues to be on hi-flow as of this evening and will most likely be on it well into tomorrow. He is resting comfortably which is good because mom and dad are not. Hopefully he has another good night an even better tomorrow. We will keep you updated.

Good night and he is off the vent

Overall Mason had a good and more important uneventful night. So far we have been blessed to have great nurses in the ICU. They took him off the vent this morning and he is having some of the challenges we have seen in the past with his left lung not opening up as much as we would like. They are watching that closely and doing everything they can to keep him from going back on some type of breathing device. Hopefully his lung will get stronger the more he starts to come around. They didn't have much of a choice this morning in taking him off the vent, he was going to pull the tube out himself otherwise!