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.

Update on Matthew 4/10/15 at 4:00 pm

Here is an update from Mike Hatcher:
 

"Matthew just got out of the OR and they were able to get a lot of the build up out of his lungs, which is very great news for today.  He is on a breathing tube for now, but hopefully it can be taken out by tonight.

The doctors still need to evaluate the next steps to take, and Matthew still needs to have the cardiac cath to see if everything is OK with the Fontan and his bloodflow, since they were actually only able to do the bronchostopy this morning.  We will know more in the next few days.

Thank you again for all the thoughts and prayers, we all feel them working."
Mike & Marie

 

Update on Matthew 4/11/15

Matthew is doing better today. They are trying to tackle the build up that is still in the lower portion of his left lung.  His left lung was completely blocked so they were able to extract most of the blockage during his bronchoscopy yesterday.  He is getting a lot of chest PT trying to get him coughing, since that will help clear what is left in his lung.

He got his breathing tube out around lunch time and one of the bigger IV lines too.  He is on clear liquids and just drank a cup of lemonade.

They are trying to get him healthy again.  Hopefully next week they can conduct the cardiac catheritization and address the issues with his heart.

Right now, he is very much looking forward to a visit from his brothers tomorrow!

Thanks again for all the thoughts and prayers, we really appreciate them

Update on Matthew Sunday, 4/12/15
 

Matthew had another good day yesterday, Sunday. He did get one more line pulled out of his leg and his brothers came down for a visit.  He actually got up and walked around a little bit so all in all a good day. Keep the positive thoughts flowing. Thank you so much everyone!

 

 

Cardiac Catheritization Tomorrow Wednesday

Hi everyone. We just wanted to let you know that tomorrow Wednesday at 11:00 am Matthew will be having another cardiac catheritization. They are going to put in a stent to open up the closed fenestration in his Fontan Circulation. They will check all his pressures and also looking at his left lung via bronchoscopy.

He will be in ICU tomorrow night. They hope to have a plan on how they will approach his treatment after tomorrow.

He is enjoying his Lego game on the iPad and was watching Frozen tonight! As always, he is smiling!

Thank you again for all of your thoughts and prayer!  They help more than you know.

Matthew Back At Columbia

After enjoying a quiet Easter and a busy week going up to the Capital Building in Hartford with Michael's 3rd grade class while Matthew spent some quality time with a friend, we assumed everything was on a good trajectory with Matthew's health.  Everything seemed to be looking up.

Unfortunately, Wednesday evening around midnight Matthew threw up and his health quickly deteriorated.  By 5 am Thursday morning, we were back in the Emergency Room at Columbia.  The team worked quickly and were able to make him stable and we are now in ICU.

Thursday was up and down and there are many theories as to what might be causing this.  The long and short is that his fontan is compromised (what they attempted to fix during his surgery back in November).  The fenestration is closing and they thought maybe it was something called Plastic Bronchitis. 

This morning, Matthew went back in for a cardiac catheterization with Dr. Vincent to see if they can figure out what is going on and what to do.  They will get a full picture and we hope to know more later today.

We are surrounded by the most amazing team of doctors in the best place we could possibly be with the love of our family and friends covering us like a warm blanket. 

Please keep us in your thoughts and prayers as we truly need as many as we can get right now.

Thank you again.

Trips to Columbia in March

Asking for Thoughts and Prayers

What a difference a day makes.

Tuesday night was an amazing night of fun as Matthew and the boys attended the Harlem Globetrotters game at Western Connecticut State University to celebrate a very dear friends birthday.  It was a late night and Matthew was tired and not feeling great but he still had an amazing time.

Letting him sleep in Wednesday morning, he continued to deteriorate.   After many phone calls and an in office consultation with Dr. Snyder we were on our way to Columbia Emergency room at 5:00 am this morning.  He will be admitted but unsure if we will go to the cardiac floor or ICU.  His oxygen levels went down to 70 overnight which is very low.  His numbers are coming up slowly but he is still not close to where he should be.

He is on a CPAP machine to help with his oxygen levels and is resting but more needs to be done to ensure everything is functioning as it should be.

Just keep Marie and Matthew in your thoughts and prayers as they wait for more news.

Matthew Update for March 30th, 2015

Hi everyone!  Just wanted to give you a quick update.

Matthew is still in ICU and it is going to be a very slow recovery.  They will know mid-week if he will be home for Easter.  He is still on the CPAP which is supporting his breathing and his oxygen levels are in the low 90's which is not great.  He had a fever last night although his appetite improved.  He tires very easily.  He may go home on oxygen but we will know more soon. 

His brothers Michael and Ryan visited yesterday and they just life his spirits like no one else can.  It is so special.  Just keep him in your thoughts and prayers.  Not out of the woods quite yet.  Thank you again!

Matthew Update & Thanks For Your Thoughts & Prayers

First and foremost, thank you all for your thoughts and prayers.  Matthew and Marie feel them and are so grateful.  She truly believes they are helping to move things in the right direction. 

It was up and down yesterday for Matthew.  Finally, his oxygen levels dropped back down into the 70's so they were moved up into ICU. 

Matthew will be in ICU for a few days. They have identified the issue as pneumonia.  They are keeping a close eye on him and he is resting and sleeping today. His numbers are going up but they want to take it slow and steady until they are sure he is strong enough.

Matthew is very fortunate to be surrounded by some truly amazing people - friends, family, doctors.  Thank you everyone for everything you are doing!

Celebrating St. Patrick's Day With Matthew

It was a great St. Patrick's Day this year for us.  Matthew was with his friends in school enjoying the holiday festivities!  Matthew's mom Marie, who is from Ireland, was able to spend an hour with his Kindergarten class reading a book about Leprechauns, taking them on a treasure hunt throughout the school, and eating Irish Soda Bread.  Marie even pulled out her accordion and played some Irish tunes while the kids danced.  Fun was had by all and we are thankful for these small little celebrations that we can share with him.

We are still working on getting his numbers where they need to be but he is happy and thriving and that is all that we can ask for.