Friday, December 30, 2011

Merry Christmas and Happy New Year!

Matthew continues to do great!  We saw Dr. Snyder on December 19th and we stopped his night time Lasix dose but after four days of morning vomiting, we restarted  Matthew on a half dose  at night and he has been fine since then. He continues to love Preschool and his speech is improving rapidly!
        Matthew’s Hearts of Hope is officially incorporated  with an EIN number and we will be filing our Non For Profit Paperwork in the next month.  I am so thankful for all who have helped on this amazing journey and look forward to all the great things coming in 2012.
Christmas was very special this year mostly because my three boys were happy and “healthy”!! It has been quite the year, Matthew’s Cardiac Cath in May revealed Lower Venticular Diastolic Pressures which kept him off the Heart Transplant list and eligible for the Fontan. Over the summer, Matthew surgery was postponed twice due to illness and eventually when it was performed on August 17th by Dr Emile Bacha, it was done without ever putting Matthew on the heart lung machine and he came up to ICU extubated!! The recovery was tough with issues with pain control, constipation and Pleural Effusions but he recovered and along the way he continued to smile.
        On September 27th, Matthew started Preschool, just shy of six weeks post operatively. Then “Hearts of Hope”, postponed due to the snowstorm but on November 12th an amazing night was had by all! December 9th Elizabeth Bradshaw presented at the Danbury Hospital Business Meeting and Pulse Ox Screening will be implemented in the New Year at both Danbury and New Milford Hospitals. A Committee has been formed and the first meeting is scheduled for January 12th. Also the local legislators will be meeting in early January to put together a gameplan for the Public Health Committee and the short session next year. I am optimistic that the great State of Connecticut will mandate Pulse Ox Screening on every newborn in 2012!
        The icing on the Christmas Cake was Christmas Eve, when we were FRONT PAGE news in the Danbury News Times! I felt like George Bailey on” It’s a Wonderful Life”. 
Here is a link for the article! It was a hard year but a great year and this was a beautiful testament to all the hard work of many people who have helped. You all know who you are, whether you bought a necklace or a bracelet, made a donation or showed your support at “Hearts of Hope” or through prayers for Matthew….Thanks a million, Gura Mile Maith Agat, I hope you’re proud!!

Merry Christmas and Happy New Year!

Monday, November 28, 2011

Update on Matthew

Matthew came home on September 6th, the last day I updated the blog! He was on high doses of diuretics to help with the Pleural Effusions, fluid in his lungs. He is now weaned down to just twice a day Lasix and once a day Aldactone and is doing great! He has started Preschool and loves it. His speech has improved a lot. Dr. Snyder is very happy with his progress as are we!

“Hearts of Hope” was postponed to November 12th due to the snowstorm. It was a huge success! Thank you to all who attended and to all our generous donors for the raffle and silent auction items. Thank you also to all the volunteers from Immaculate High School and their parents and to Linda Hatcher, Lisa O’Neill, Marianne Fahey, Mary Ellen Midgley, Olwen Gurry, Pat Keenaghan and Virginia Clerkin for being the A-Team behind the scenes.  I could not have done it without your help. Thank you also to Dr. Michael Snyder and Dr. Kevin Ferguson for being guest speakers and also to Celtic Cross Pipes and Drums for their beautiful bagpipe music, “Amazing Grace” brought us all to tears. We raised a lot of awareness and money, $7500 for our great cause. Senator Michael McLachlan, Representatives Jan Gieglar and Dan Carter attended the event and promised to help pass legislation in Connecticut that would mandate Pulse Oximetry testing on every newborn. Elizabeth Bradshaw from Children’s National in Maryland will be doing a presentation on Pulse Oximetry Screening and implementation process at Danbury Hospital on December 9th. 

As we approach Thanksgiving this week, I am most thankful for how far we have come with precious Matthew in the last year. I am feeling very blessed indeed. Thank you as always for all your prayers and support! Coming soon “ Hearts Pillows” for all the babies and toddlers in the Cardiac ICU at Columbia Presbyterian to use post open heart surgery to help ease the discomfort when coughing!
Happy Thanksgiving to you and yours! God Bless you all.


Tuesday, September 6, 2011

Matthew finally had his Fontan surgery on August 17th, 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 26th and did OK for about two days. He was readmitted on September 1st with Bilateral Pleural Effusions and remains in the hospital as of today September 6th. 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.

Tuesday, July 5, 2011

Matthew’s surgery was postponed until August 3rd! 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 29th. 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

Monday, June 6, 2011

Matthew had his Cardiac Cath on May 11th 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 29th, 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 29th, 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!

Monday, March 21, 2011

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

Monday, February 28, 2011


 



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




Matthew sees his cardiologist on March 14th. 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.

Monday, February 14, 2011

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
 

Thursday, January 13, 2011

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 13th 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 22nd. 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.