MATTHEW OUT OF ICU -  UPDATE FROM 7/17/15
First and foremost, thank you to everyone for all the texts, emails, messages and phone calls and most importantly the prayers, my apologies for not responding to them all. Matthew is on the floor since yesterday. He continues to cough up casts but they are fewer and fewer and his oxygen is being weaned slowly. He is between 1 and 2 liters via nasal cannula and he is sating between 86% and 94%. We actually took a short walk outside this evening in the garden downstairs, it was so good to breath fresh air!
After some discussion with Matthew's doctors, we decided to send his medical records to Children's Hospital of Philadelphia for review. They have a program there that is specifically focused on Matthew's issue, Plastic Bronchitis and he may be a candidate for a procedure that they do, that can help alleviate these acute episodes of respiratory distress. We will likely be heading there in the coming weeks. We have added many more medications and treatments to his current regimen, 16 doses of medicine daily with 4 x 20 minute chest pt treatments with his vest. Matthew continues to smile through it all and laughed loudly tonight while face timing with his brothers and Nana and PopPop! Michael and Ryan are coming to visit tomorrow and we can't wait. We are hoping to be discharged home on Monday.
Thanks to Barbara Richardson for bringing dinner over tonight, I'm only sorry I wasn't home to taste it! Keep the prayers coming,  we still have a long road ahead of us!
Thanks,
Marie, Mike and especially Matthew. 

MATTHEW DOING WELL UPDATE FROM 7/14/15

Update from Marie from last night 11:00 pm

After a long day in the ER, Matthew got admitted to Cardiac ICU where he is surrounded by lots of people who know him and love him! He went to the OR tonight for a bronchoscopy, right before he went in he coughed up a large cast from his plastic bronchitis. He only spent one hour in there and they were able to remove the few remaining casts. In true Matthew fashion he had done most of the work beforehand!

He is back in ICU now resting comfortably on 4 liters of nasal cannula oxygen and is sating at 90%, as I always say God is good!

Thank you for all the texts, messages and emails and most of all the prayers, we are so blessed to be surrounded by such an amazing group of family and friends!
Good Night from New York,

Marie, Mike and especially Matthew

Matthew Heading Back to Columbia This Morning
 

It has been an amazing summer so far for Matthew.  Lots of friends, swimming, and fun with a trip to Hersey thrown in the mix!

Unfortunately, Matthew began to cough yesterday and threw up last night.  Although Marie continued his treatments, it was decided that being at Columbia is probably the right course of action.

So, Marie has just gotten in the car to take Matthew to Columbia.  This reoccurance is sooner than anyone hoped or expected so please keep them in your thoughts and prayers today.

Hope to update you later today.

Mike, Marie, Michael, Ryan, and especially MATTHEW

Great Day for a Race - Thanks and Congratulations to Dylan Shiland

Despite a rainy start, we had an amazing day on Saturday for Dylan Shiland's Eagle Scout 5K!  Dylan had an army of volunteers and things ran very smoothly.  We were so proud to be a part of it and grateful to Dylan for choosing Matthew's Hearts of Hope as his charity to support.   Congratulations on earning your Eagle Scout badge.  You certainly deserve it!

Our winner of the day was Joe Beatty who came in first overall.

Thanks to all of the racers, the sponsors and everyone who made the day possible.  We feel so blessed and honored to be a part of it.

Watching Matthew cross the finish line was truly a notable event for us - very special!

Mike, Marie, Michael, Ryan and Matthew 

 

Why Running or Walking This Saturday May 16th Means So Much

This year Mother’s Day was extra special after the last few months with Matthew. As you know he had his fourth open heart surgery on November 10^th 2014 and we were very surprised to be hospitalized twice so soon afterwards. The official diagnosis is Plastic Bronchitis and Matthew will now add a Pulmonologist to the list of doctors he will see on a regular basis.

Matthew is a complicated little man and hides his complexity very well behind his cute face and amazing smile!  He lives with half a heart.   He is what is called a single ventricle patient as he pumps oxygenated blood around his body and then it comes back through the lungs to be oxygenated again and then pumped back around his body from his heart again. He has no spleen and his liver is mid-line instead of in his right lower quadrant. He has two lungs with three lobes and his heart is on the right side and faces backwards. He now takes 10 doses of medicine a day to help his heart and lungs. He will likely have a heart transplant at some point but we are hoping it is later rather than sooner.

These past few weeks have included some emotional highs and lows but through it all we have had an outpouring of prayers and support from an amazing group of friends and family and for that we are extremely grateful!

But we are the lucky ones.  Just being on the floor at Columbia with some of these really sick kids makes us realize how lucky we are to have Matthew back home with us.  There were some kids on the cardiac floor who we met when we went to the hospital the first time but were not there when we were readmitted.  This is the reality of life with a child with CHD.  And this is why we do what we do.

This Saturday Matthew plans on walking and running the 5K Run in Sherman as part of Dylan Shiland’s Eagle Scout Project. I know he would love to have some company on scenic Church Road not only to support MHOH and Dylan, but to support all of those kids who may very well depend on the research that is being done for Congenital Heart Defects which is directly where the funding will go.

Many people never meet their hero, I gave birth to mine. He has a faith like no one I know and faces the many challenges he has with incredible bravery, I know he has inspired many people around him including me to be a better person.

Eagle Scout Hosting 5 K Run to Support Matthew's Hearts of Hope
 
So proud to announce tht Sherman resident and Eagle Scout Dylan Shiland has generously offered to coordinate a 5K run to support Matthew's Hearts of Hope as a part of his Eagle Scout project.  The race will be held on Saturday, May 16th starting at 9:30 am.  The cost to participate is $20.00 on or before May 16th 2015 and $25.00 for everyone on race day.  You will need to preregister by April 30, 2015 to receive a t- shirt  There will be prizes in various age groups and all are welcome to walk or run!

Dylan was born with a hole in his heart so this project is one that holds a very personal meaning for him.  We are grateful that Dylan chose our organization so if you can please come and support both Dylan and MHOH on May 16th we would be so grateful.

Home Again - A New Normal

 

Hi everyone!  First we want to thank you again for all of your support over the last few weeks. We got home late last week and have just been trying to get into a rhythm with new medicines and new things to keep track of.  But we are thankful to be home nonetheless.

Matthew’s oxygen levels are holding steady at 92% to 93%. His appetite is much improved and he is slowly gaining back some of the weight that he lost.  He continues on twice a day Pulmozyme Nebulizer and Chest PT. We saw Dr. Sadeghi, the pulmonologist yesterday and he is happy with Matthew’s progress. His lungs sound good and he ordered a Chest PT Vest which Matthew will wear for 20 minutes every morning and night. Matthew has been homeschooled this week by his wonderful kindergarten teacher Mrs. Davidson, and the messages sent back and forth between his friends and him warmed all our hearts! He is very excited to return to school today Friday and see all his friends.

Although Spring Break wasn’t all we wanted it to be, we are happy to have Matthew home. We ventured out last night for a quiet family dinner to celebrate Mike’s birthday, we all enjoyed some much needed family time! Matthew has enjoyed watching the NY Rangers playing in the NHL playoffs with his brothers, although he wishes the NJ Devils were playing also, maybe next year!

We greatly appreciate all the prayers and messages these past few weeks, we felt them more than you could ever know!  Matthew is back to his smiling self again and that my friends is worth it’s weight in gold!

Update After Cardiac Cath 

God is good.  Matt got out of the cath lab and is in recovery.  The doctors looked at his lungs, his heart pressures, and his blood flow, and everything was better than expected!  Matthew did not require a stent in his Fenestration because the previous collateral vein back to his heart is still there - one of the biggest concerns going into the cath.  Marie and I are thrilled with these results and know that they are surely the result of all the prayers.

As of now, it looks like Matthew will probably be able to come home tomorrow, again good news.

The doctors do want him to get chest PT and nebulizer treatments, just to be sure this does not happen again, so that will be another procedure for Marie to add to her daily list of special tasks for Matthew, but it certainly seems worth it.

It is not lost on us that seven years ago today we first found out that Matthew had a Congenital Heart Defect.  This is the day that Dr. Snyder came into our lives and we learned that we had a long road ahead of us.

We would also like to say that the team of doctors that are in Matthew's corner are the most compassionate, committed physicians that we could ever hope for.  Columbia is the place we know we can go and get the best possible care and where they take their patients into their operating rooms and their hearts.  Thank you Dr. Vincent, Dr. Snyder and Dr. Torres.

Again, thank you all for the thoughts and prayers, we can not express enough how much we feel and appreciate them.