Last Post

This will be the last and final post for this blog. 

My Dad's journey to a healthy heart ended tonight. He was surrounded by all of us when he passed away. 

Thank You to everyone who has followed us on this journey. 

Thank You for all of your prayers and well wishes

but in the end...God wasn't listening :(

Mohammad Ali Has Nothing On Dad!

In 24 Hours We Have Made UNBELIEVABLE Strides!!!

 Yesterday we were in a pretty bad place! The "artwork" in the room Mom and I went to, to talk to the social worker just added to the awfulness. This looks like the guy cut off his head with a sword and it was eaten by the dragon...comforting!!!! 

Yesterday things had gone from bad to worse! Dad's liver failed, kidney's were failing, blood gases were off. Potassium level was rising so high that there was a danger of the heart stopping. If the potassium kept rising they were pretty sure in fact the heart would stop and there would be no coming back from it. He started bleeding from a lung...There is on Dr. whose name will not be mentioned but he is not our favorite person. He gave us the doom and gloom report three times as of last night! 

The good thing is, Dad's surgeon is a brilliant man who is very thorough and very talented! He is also a man who does not give up! In fact after they gave us the whole rundown of failing everything and failing vessels the last thing he said is we need a miracle but we WON'T GIVE UP!

So basically you just need to hit rock bottom and Dad will amaze you!

We all took turns going in and out of the room last night so someone was always with him. At 3:00a.m. when I went in they said there was a marginal improvement but at least it was some type of improvement. When I almost fell over 45 minutes later I told the nurse I was going back to sleep for an hour but I would be back. By the time I went back at 5:45 things were even better. By 2:00 p.m. today His potassium level was normal, kidney function was normal, they reduced the vent to 50% so he was doing 50% of the work on his own, his liver function even showed signs of marginal improvement. He was no longer bleeding, blood product and clotting factor was no longer needed as bleeding had stopped, they were able to reduce two blood pressure medications, and his blood pressure was normal, temp was normal! Even Dr. Doom was surprised. He said, he never thought we would be where we are today as of last night. 

He doesn't know Dad and the support and love he has pulling him through. As my cousin Ryan put it " I am pretty sure Uncle Michael has more people praying for him than the POPE!" 

So we have made crazy progress in 24 hours and when we actually sat down and figured out the hours it had been less than 48 hours since the second surgery so ANYONE would need some time to recover!!!!

My cousin Erin sent us this awesome surprise today! While we were in the room Dad's nurse called me out to the hall to give me this beautiful edible arrangement. It was soooo delicious and I ate way more than my share of fruit :) We also shared it with Dad's awesome team of nurses. They were so very happy to be able to share it. 

Brett, Ryan and Tracy came up again tonight too. " The Boys" all sat around the table in the 7th floor family lobby where we have taken up residence ( please forward my mail here :)...just kidding )

Auntie Janet came up this morning and brought me a much needed package of socks. It was silly. I had brought a bunch of everything, but socks. Mine were so stretched out from wearing them for 5 days that they kept falling into my shoes! The nurse set me up in another room today so I could take a much needed shower and I was very happy to put on clean clothes and start the new day of healing.

Little Vivian came to visit again today and cheer everyone up :) I am pretty sure she is Dad's Littlest Biggest Cheerleader. The boys have started calling her "Ant Viv after the Aunt Vivian on the old TV Show "The Fresh Prince of Bel Air" :) She's such a great baby and always manages to save a smile for Auntie Laurie too :)

 

Brett's Boys Andrew and Mason made these really cute Butterflies for Dad to let him know they love him and are thinking of him...complete with stickers! ( If anyone has seen that AT&T commercial...they are not stickers on "casttests" that say get better ) LOL sorry had to put that in there I love those ads!

Because things were a little better today I was able to visit my friendly neighborhood gift shop and peruse the Halloween collection :)

I love Halloween, All the purple, Orange and Green decorations. The fun stuff in the gift shop was not disappointing :)

They Even had the "Days of the week" Mustaches! I wonder if Lilly would like to wear these with her days of the week socks?

Brendan and I were in with Dad tonight and things are stable...we'll take stable and take boring! I came up to write the blog and keep people updated. We are not out of the woods but at least we are in the sun. Please keep praying and sending positive thoughts. I am pretty sure Dad can feel all the prayers and Love that are surrounding him! I can't wait to tell him about all of the people that were pulling for him and praying for him.

Special Thanks to both The Assumption College Assumptionist Community who ramped up their praying when I mentioned that Dad was going in for surgery also to Fr. Terry Dougherty and Fr. Charlie Monroe from Our Lady of the Angels Parish who have continued their prayers. and to all the people of St. Anne's Parish in Shrewsbury, both parishioners and clergy alike have been a HUGE source of support throughout our journey and continue to be amazing.

To all of our family and friends. People who have traveled far and wide and continue to offer support and anything else we need. You are our strength, our crutches when we need to lean on you and we could NEVER do this without you.

Please, please keep praying for our Miracle Dad and his recovery so he can recover and continue on his AMAZING Journey!

Until Tomorrow,

Laurie

Please Please Please Please keep praying

We need a Miracle!

Ups, Downs, Ups and Downs

Today started off OK. Until they came back in and told us Dad needed a second surgery.

Yesterday we started off in full excitement and positive thinking. That lasted all the way until this morning when they woke us up to let us know they had to take Dad back down to surgery :(

So Dad's new heart wasn't being very efficient :( They needed to bring him back down to surgery to install a few devices to help aid the new heart until other functions can be controlled.

When they came back after 6 more hours of surgery they said they felt they were in a better place than this morning and they were optomistic. 

So we went about our day of waiting

 

 First we waited while they called a code red (fire) on the other side of the building and we watched them all evacuate from the family canter window. Kylie really loved the ladder truck with all the flags!

 When 1st Surgery was done they moved us all back to the 6th floor to wait. We had quite a crew. Cousin Gabby brought snack and coloring pages which turned out to be a big time passer and took our minds off things for a while.

Guess who colored what picture???

 Gabby also brought some yummy chocolate snacks too! Kylie wore them well, her face doesn't lie :) She also went on the hunt for Rapunzel's tower with Lilly and Kerry.

 

Even little Vivian joined in the spirit  by wearing her heart outfit :)

 

 Right before everyone left Viv gave us the got your nose sign. One that Dad often does with the kids we took it as a great sign.

After everyone left...Then the Dr came in :(

He basically said Dad is Critical. They are trying everything they can to improve all the odds and they will remain optimistic but he has an extremely long long long road ahead.  They said the next 24 hours will be extremely critical. Please even if you have never prayed before we need that prayer chain going strong tonight. I know Dad says he can feel it when people pray and help him through. We need all the help, positive energy, well wishes, and Massive amounts of prayers that we can get. We know this is what Dad wants more than anything! I think we want it more! Please please keep the prayers coming. Please ask friends and family members to pray and pray hard. We need a good positive energy flowing here and I know we can do this!!!

Until tomorrow,

Laurie

THE DAY WE HAVE BEEN WAITING FOR, FOR FOUR YEARS IS HERE!!! WE GOT A HEART!!!!

Needless to say it has been a very exciting day!!!!

Dad was suppose to come into clinic today to meet with infectious disease to see if they could remove the pic line and if he could stop the IV antibiotics!

We instead got the best news ever!!!!

THEY HAVE A HEART!

That was the news Dad got 20 minutes before they were walking out the door!

Dad is on the phone cool as a cucumber and says to Mom, " so yeah, they want me to bring all of my equipment in when I come because they have a match." Matter of fact, like he said he was having a turkey sandwich for lunch!

SOOOOOOOOOOOOOOOO

Mom and I spent the next 20 minutes loading up all of his LVAD equipment grabbing a suitcase to throw it all in, threw some clothes in a bag and jumped in to the Prius, luckily it was a nice non rainy sunny day :)

We were all pretty excited, we made phone calls to the boys to let them know. Poor Joe just got back to New Jersey last night and he left work to come back up here. 

He and Julie kept very busy with the magical paper cup. She thought it was great!

Brendan and Kerry got here with the kids in record time too. Lauren is on her way here from NJ. She left right after school and is staying with us at the hospital tonight.

It has been a whirlwind 12 hours! 

We waited in the family library with Dad while they got the paperwork together. This was the first book we saw! I think it was a good sign.

So now the waiting begins but at least it is the best wait we have had in four years!

Please, Please, Please 

Keep the prayers and well wishes coming. Today they are more important than ever!

Will have an update tomorrow after surgery!

Until Tomorrow,

Laurie

Fairly Good Week

Lilly has been very excited about her birthday party for weeks and this week it finally happened :)

I asked Lilly if she wanted to help me make fudge for her birthday party. She couldn't wait to make it. She came over Saturday morning instead of Friday night because we did other stuff to prepare for the party on Friday night. She is a very good candy maker. She spread the fudge in the pans like an expert! She didn't even get one drop on her pretty party dress. 

The festivities on Friday consisted of Brendan and I painting the life size cardboard cut outs of, Alice, The Mad Hatter, The Cheshire Cat, Tweedle Dee and Tweedle Dum!

Kerry also made a whole bunch of decorations and Life size cards from the "March of the Cards" in the movie. She had really cute goodie cups too for the kids to take home, complete with masks or hats from characters in the movie. She had little signs with the drinks that said "drink me" and with the goodies that said "eat me". 

If we had more time we should all just go into the party theme business! We are getting pretty good at it. Between all the Fire Department comedy or hypnotist shows and all of the kids birthdays we are on a roll! We won't talk about how long all of this takes though :)

 Kerry also made cake pops ( at 2:00 a.m.) after she had gone to a party for her future sister in law. Lilly could not be talked out of the cake pops. She wanted them and there was no changing her mind. Kerry is simply an amazing Mom and goes above and beyond the call of duty ALL the time.  Grammy and Papa watched as the kids ate their pops :)

Lilly and Kylie enjoying their cake pops. Kylie had "Chaklette" and Lilly had one shaped like Alice. Lilly also made sure that all of her guests had the special straws that Auntie Phyllis Ann sent for her party. She held on to her straw all night! The kids all had a good time. They played in the bounce house for a long time and ate all the yummy food that Kerry and Brendan made. When the cake was all done it was time to open the gifts.

Of all the gifts Lilly got Kylie loved the Disney socks that Lilly opened and she had to go through each pair and show Kerry each set :) Lilly's Bff's Victoria and Maria watch as she opens her gifts. The rest of the kids were having so much fun they didn't stop :)

After the gifts were all opened everyone got settled in for the Movie premier of Alice in Wonderland! There were a lot of kids and they were all so good during the movie. Lilly's Aunt Melissa even brought hot chocolate for when it got a little chilly. Brendan thought it may get too cold so he brought a giant propane heater which Papa, Grammy, Julie and I sat really close too and it was very comfortable. 

On Sunday Little Miss Vivian turned a week old! She is still cute as a button :)

I commemorated Vivian's week birthday by flying a helicopter! Well really I had it planned before she was even born but it sounds good, right? I took a  helicopter flying lesson at the North Andover Flight Academy located at the Lawrence Airport. It was a beautiful day to fly. I was able to get a video of my flight and a pilot in training t-shirt as well from my co-pilot. It was truly amazing and I want to do it again! I was sad when it was over and we had to go back down. The instructor I had, Chris made you feel totally at ease. He was there in case you had any trouble and let go of his controls completely a few times so you were flying solo! It was so cool!!!

Dad had a pretty good week next Monday he will be able to come off IV antibiotics and switch over to oral ones. He learned the hard way if you sit in the sun for even 5 minutes, uncovered, the antibiotics make you sun sensitive. His legs from the end of his shorts to the top of his socks are a little pink. 

He is still feeling a little tired and sleeps a lot but he is out and about too. He met his friends at the four seasons restaurant last night where his old boy scout leader Freddy Patente still cooks for the "Scouts" who are all grown up with "grandscouts" now :) 

Thanks to everyone who still call, pray, drive, text, e-mail, visit and take Dad out. All of these things no medicine can compare too. Without all the support he gets from family and friends the medicines he takes would never work. The meds cure the physical the family and friends are what cures the person.

Until Next Tuesday,

Laurie

The List

The List...It's Starting To Become a Game :(

Last week, Dad got the news that he was off the list again because his levels indicated that he was too dry. Needless to say he was not very happy nor were the rest of us. I am beginning to think they put you through this stress to see how you can handle rough situations and then that decides if you get a heart or not! This list is proving to run the lives of those who are on and off it. 

Dad had an appointment today at Brigham and Women's. Auntie Janet drove Mom and Dad in and his appointment went well. His levels are all back to where they should be and they are waiting for the final word from the renal team to see if he can be moved back onto the list at a 1A status. He is continuing to take the IV antibiotics at home and can administer them himself through the PIC line he has in his arm.

A visiting nurse came and then another one came to finish what the first was unsuccessful at. There really is no part of any of this that could be deemed easy.

Dad lost a friend this week. Jim McNalley the owner of the "Old Timer's" in Clinton where Dad and his band Mulligan Stew played for years every other Sunday night. It was always a good time to go and hear them play. It was most fun when the whole big group of our family would go together. The kids would dance and sing the Unicorn song up in front and everyone would sing along. Jim was a great guy and a wonderful family man. He had the voice of an angel and now he can sing among them. He will surely be missed. One simply cannot think of the Old Timer without thinking about Jim and his sweet voice and kind ways.

This past weekend, I went with my Auntie Peggy to the Cape to help her out with a few things. This photo was taken in front of the Lobster Trap where we ate dinner. If you look in the windshield it looks like I am driving the car :)

We managed to get some things done and had a great weather weekend too. We put up a sun blocking film on one of the windows. The package said easy installation, we figured we would give it a whirl. So we read the directions, used all four of our arms, four of our legs and I balanced my head on the windowsill as well. We could have used at least another octopus with 8 more arms. Maybe then we could deem the product an easy installation product. We did a pretty good job and it makes a huge difference. It says it will save 50% in energy costs. If they do the same math to calculate the energy costs as they do to determine the amount of people it takes to perform an easy installation, I am not holding my breath!

On Saturday night I received a very exciting text message from Tracy. They were heading to the hospital to have little miss Vivian.

She is perfect! She is so very cute and was alert the whole time we were there to visit.

Adele is a very happy big sister. She loves her little sister very much.

Colin kept saying "hi baby, burrito" because she was all wrapped and swaddled like a burrito :)

Adele got to give Vivian "a ride" back to the room from the nursery where she had to go to get her shot. 

Everyone is home now and they are a family of 5 :) I got to go over today for a little bit to welcome Vivian home. She was all tuckered out from her journey and was asleep when I arrived. It's ok I know we will have lots of time to play as the years go on. Before you know it we will be watching her get on the bus to go to Kindergarten!

Thanks to everyone who keeps in touch and offers a helping hand when we need it. You are all truly amazing and we couldn't do any of this without help.  

This weekend we have Lilly's 4th birthday party coming up so I am sure there will be more photos next week :)

Have a great week everyone.

Until Next Tuesday,

Laurie

Labor Day Weekend and Lilly is 4!

Labor Day Weekend Festivities

We all had a pretty busy week and weekend!

Lilly turned 4 on Saturday so Bren, Kerry, the kids and I all went to the rainforest cafe at the Burlington Mall for a special birthday celebration dinner. Earlier Lilly and her cousin Annie were treated to the Movie Monster's University at the BIG theater. This was Lilly's first time to the real movie theater. She loved it!

The Rainforest Cafe has tons of amazing fish to look at an all kinds of audio animatronic type animals that make noises and move. It's a little bit like Disney. After we ate Kylie and I took the opportunity to try on a few hats in the gift shop :)

After Dinner we went back to the "new house" as Lilly calls it. ( If she is anything like we are, she will be calling it the new house the rest of her life. We still call the 30 year old section of our cellar, "the new part!") We sang happy birthday, had cake and ice-cream, Kylie popped a lot of bubble wrap and Lilly opened her presents. This present she is riding is her new purple scooter. She had tried our neighbor Kasey's scooter a month or so ago and told her Mom and Dad she wanted one like that only purple for her birthday. Kerry was able to find one exactly like she wanted and Lilly was very happy!

On Sunday We went to a good ole' fashioned family backyard bar-b-que at the Towners. Lilly was so happy Donna let her pick a tomato from her garden. We got to eat lots of tomatoes at dinner which were so delicious! Julie got to eat some watermelon. I think she liked it! Kylie even managed to save a chocolate chip cookie for Donna :)

This is Patty Play Pal ( In the middle ) she was Donna's doll when she was a little girl. We were trying to see who was taller. Lilly or Patty? Lilly is going to look for a fall dress that maybe she could share with Patty for the fall season. Kylie even held her hand :)

Adam and Amy are raising chickens for eggs. These are my two favorite. The black one is Maurice (Maurice the first ended up being a rooster so he had to go back to the farm ) This is Maurice too :) Brendan says he looks like an alpaca! The "blond" one I like to call Olivia, after Olivia Newton John, because she looks like she is wearing leg warmers! " Let's Get Physical"

This was Dad's First outdoor outing since he has been home. Mom, Dad, Auntie Janet, Uncle Jimmy, Tracy and Chris all went out to dinner on Saturday night. That was his first indoor outing. He is definitely feeling better. He stays awake for much longer periods of time and seems to have a little more pep in his step than before the hospital. Kylie asked him "Papa, what's that?" and grabbed his mustache. He said, "It's my mustache, do you have a mustache?" She had to touch her face just to make sure she hadn't grown one without  knowing!

She then told Brendan he had a mustache and a scratchy face :) To which he answered by tickling her and her giggling away.

We are still awaiting the arrival of miss Vivian Grace. I thought I would sew her up a few new matching things that wouldn't be hand me downs but instead would be hand made. The little diaper case, bib and taggie blankie are all pink and ready to go :) I can't wait to meet her, the anticipation is unbearable. Tracy and I went out today to Starbucks and Staples for a few supplies. The Pumpkin Spice Latte is back for the 10th year so I of course had to have my first one of the season

It was as good as always :)

As always, thank you to everyone who keeps us going with your kind words, cards, notes, food, and company. You are all the best kind of medicine a family could ask for!

Hope everyone has a great week!

Until Next Tuesday,

Laurie