Wednesday, July 22, 2015

MATTHEW MADE A NEW FRIEND AT COLUMBIA
Matthew has a new heart warrior friend named Morgan.  She just found out today (Monday) that she needs another open heart surgery Tuesday or Wednesday (we are still waiting to hear).
Please keep her and her family in your thoughts and prayers in the coming days and weeks.  We know this road so well and it was so great that Matthew had a chance to meet her.  I think it was helpful for both of them.

And for all of you local Sherman folks, she attends the Gunnery in Washington so you read the shirt correctly!!!! 

Monday, July 20, 2015

BABY S TURNED ONE YESTERDAY!!

In the midst of our crazy week a very special little boy, Baby S turned one, he is doing great, so blessed to be s part of his life!! Here is a note from his Mom!!!
Hi Marie,
It's been a while since we spoke.... But we always talk about your amazing deeds! We are forever grateful to you and your family. We just celebrated out Chaim D's b-day-can't believe it's already a year.

I grabbed this pic this morning and I felt I had to share with you!
You deserve it!!
video

Sunday, July 19, 2015

GOOD TO BE HOME
As always, God is good to us and we arrived home yesterday (Monday, 7/20) and Matthew and I are settling in to our new normal with a few more medications than when we left.  Just need to stay on top of them and try to take it easy.

We are sending our records down the CHOP in Philadelphia so they can review everything and hopefully come up with a plan to treat the plastic bronchitis.  Not sure where it will take us but it is our next step.  Keep your fingers crossed that we find some answers that will make Matthew's life a bit easier for now.

Otherwise, we are just thankful for all of the support, calls, texts, emails, thoughts and prayers that come our way when these situations arise.  Thank you again.

And, coming home to these guys is the best gift we could ask for!!!

Friday, July 17, 2015

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

Sunday, June 14, 2015

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

Monday, May 18, 2015

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
 


 




Thursday, May 14, 2015

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 10th 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.