Matthew finally had his Fontan surgery on August 17^th, 2011 after being postponed twice due to a virus and a cold. All went well in the Operating Room, the surgery was done off the lung heart machine and he was extubated before coming up to ICU post operatively. He had many ups and downs in the post-op period, including pain control, large right pleural effusion, fast heart rate, constipation and low Potassium levels. He came home on August 26^th and did OK for about two days. He was readmitted on September 1^st with Bilateral Pleural Effusions and remains in the hospital as of today September 6^th. He is doing much better and should be home again in the next few days!

Senator Mc Lachlan is doing a great job on our Pulse Oximetry Screening Lobbying efforts. We have received the Research Report back and it was very positive.  The Report has been sent to the Public Health Committee for further review. We have another meeting scheduled for next week which includes Representative Richard Smith and Selectman Andrea O’Connor. Thanks again for all your support and prayers. Tickets for our upcoming event “Hearts of Hope” will be available on the website very soon.

Matthew’s surgery was postponed until August 3^rd! He picked up a virus the weekend before and was afebrile by Monday but his bloodwork indicated that his little body was still fighting it. I was obviously disappointed and a little frustrated but God has his reasons and I have made my peace with them! On a happier note Matthew had a few firsts on his July fourth weekend. He went to his first movie, Cars 2 as part of a birthday party for friends of his brothers Hunter and Tanner. He loved it! He went tubing on Lake Candlewood with his brothers, see the photo below. He also saw his first fireworks and loved them! Thank you as always for all your prayers and good wishes. Keep them coming, we still need them for the upcoming surgery! 

We continue to plan our event “Hearts of Hope” at Danbury Hospital on October 29^th. It will be a sell-out event so make sure to get your tickets. They will be on sale very soon! It promises to be an exciting night! I have made contact with some local politicians and also Joint Commission in regards to mandating Pulse Oximetry Testing in newborns to better screen for Congenital Heart Defects, the #1 Birth Defect.  I am working on meeting some of them this month to share the facts and to encourage them to start discussing it in Connecticut! I’ll keep you all posted!

Matthew Going down a Slide and Loving every minute.

Matthew Tubing with His Brothers  Michael and Ryan

Matthew had his Cardiac Cath on May 11^th and we got some good news! His Ventricular Diastolic Pressures are lower so the medications have made a difference. From a numbers standpoint he was 18mmHg a year ago and he was 14mmHG this time and normal is 10mmHg. They have decided to go ahead with The Fontan on June 29^th, 2011. He is still a little risky but they feel it is best to do the surgery and see how he tolerates all the blood flowing through the lungs to be oxygenated. I am happy we are at this point and pray that all goes well. Thank you as always for all the prayers!

“Hearts of Hope” is all set for October 29^th, 2011 at Danbury Hospital with a wine reception to follow.  There will be numerous political figures attending as well as potentially some celebrities!! We have added to our product line and have some silicone bracelets now. They are $2 or just make a donation and we will get one to you! We are over $6000 in our fundraising efforts, thank you for all your support.
Also we are in the early stages of advocating for every newborn in the State of Connecticut to have a pulse oximetry reading done after 24 hours. The goal being that, more Congenital Heart Defects would be diagnosed sooner leading to better treatments and outcomes. It is the number one birth defect but many go undiagnosed!

......Coming soon more details on a Screening of the Movie "Hearts of Hope" at Danbury Hospital on October 29th, 2011!!!

 



Donna Arlands, Myself, Nadia Ostrovsky and Helen Anne Ostrovsky at Sale of necklaces at Holy Trinity!




Matthew sees his cardiologist on March 14^th. His oxygen levels have been slipping downwards. He runs about 80% to 82% now. Hid Cardiac cath will be scheduled in April or May. Then we will know what is going on with his Ventricular Diastolic Pressures. If lower he will have his Fontan, if not we try to figure out what options we have.

Matthews Hearts of Hope has raised over $5000 to date and a lot of awareness. Thanks to everyone for all their continued support and prayers.

Raising Awareness on Valentine's Day for Congenital Heart Defects through Matthews Hearts of Hope

Meg Luddy and Matthew

Michael, Ryan and Matthew with Connie at the IGA in Sherman

Me, Matthew and Denise De Palma



Michael, Ryan and Matthew with Donna at Sherman Wine and Liquor

 

It’s hard to believe another year has flown by and here we are in 2011. Matthew made his trip to Ireland with Mammy, Daddy and his two siblings in October and met his Irish Grandad for the first time, see the picture below. He loved to be up the yard at home among all the cattle, a real little farmer! He met all his Irish cousins, Aunt Vicky, Uncle Seamus and some cousins from County Clare also for the first time.

Upon returning from Ireland, we increased his Carvedilol. He vomited once a day or more for a month. We checked his Digoxin levels, Lytes and needless to say they were a little off. We lowered his Carvedilol and the vomiting subsided. We saw Dr. Snyder on December 13^th and on the ECHO his cardiac function looks good but again we won’t know until June, when they do the Cardiac Cath, if the medications are working.

Matthew is happiest when he is with his brothers. With snow on the ground he has gone sleighing for the first time, bundled up mind you! The faster you go the better he likes it. He is great “Little man” and a blessing in our lives. We are grateful for every day with him and are appreciative of all the prayers for him. Please keep them coming!

I would be remiss if I did not mention Matthew’s First Love. Her name is Faith and unfortunately for us Faith earned her angel wings on December 22^nd. We had big plans for them to marry on Valentine’s Day 2031 but God had a different plan. He now has his own personal angel in Heaven and she will live on forever in our hearts.