Ok Week...so far

 Birds on the wire? Maybe that's our problem...

On Sunday Dad's numbers were off again. Everything that was suppose to be up was down and everything down was up. Needless to say Mom called Brigham and Women's. The odd thing was that instead of cardiology she ended up with neurosurgery! They changed numbers but never bothered to inform the patients???

When she finally did get through they told her not to worry and just monitor his numbers. As long as he was feeling ok they were not too concerned. Well that's what happened last time and by the time he was feeling bad it was almost too late!

I went to work and called to check in and the numbers were still off. I suggested that Dad change his main cable to see if that changed things. He said as soon as he moved the wires around all the numbers reset and everything went back to normal! I am happy to say we are still at normal and have been since late Sunday night!

So the "spare wire" I am sending back with them to the Brigham to get a replacement. Dad was suppose to go for a check up on Thursday...they have changed it to Tuesday the 5th.

His blood has been reading thicker than normal so I am hoping they get that under control quick. The thinner the less likely that clots will develop and clog the pump.

I was lucky enough to get to watch this little sweetie and her sisters. Lilly and Kylie were not feeling so good( colds ) and Brendan and Kerry were going out. Because we are trying to keep Dad as healthy as possible, I went to their house to watch them. They were so cute :) Lilly gets a little frustrated that Kylie wants to play with all of her toys too but Kylie just brushes it off and we can usually distract her long enough to play with something else. Both girls were a great help with little Julie. She needed a new outfit and Lilly helped me find one while Kylie got me a bib and a face cloth for her. Very good big sisters. Julie is one lucky kid :)

I was lucky enough at Dad's benefit to get a photo taken with both of my Goddaughter's! Usually I am the one taking the photos so I am very thankful that Joe Gonzales-Dufrense was there to help us capture all of the moments from that special day. I will remember this day forever but am very grateful there are photos that we can look at and remember every part of that day.

The Community Advocate came out in print this week! We made the front page!!!!

We have been extremely blessed to have so much help from all of our family and friends. Friends from the past, friends we see now but all needless to say all wonderful, wonderful friends. The donations continue to come in and are alleviating the extra stress that medical expenses can create. The bills will keep coming too so it is wonderful that we have the help that we do when Dad's health insurance is not enough. Health insurance is so important yet, it still amazes me that they think people have these unlimited funds to pay for their medical treatments and medicines.  

Cleveland :)

We cannot thank everyone enough for EVERYTHING everyone has done for us on this journey and continue to be there every step of the way. Even the little simple things we have needed help with like feeding my fish Cleveland while we were in the hospital was taken care of by our family and friends. 

Thanks again for all the thoughts, prayers, well wishes, meals, visits, texts, emails, cards, donations, masses, phone calls etc. We cannot ever thank everyone enough. We just hope you all know how important you all are to us and that we could NEVER do this without all of your support.

Until Next Tuesday,

Laurie

The Cold Season is Upon Us...Literally

BRRRRRRRRRRRRRRRRRRRR............Even Frosty Has Frostbite!

It's 8 Degrees out there -4 with the windchill and falling  :( 

Dad did great at his appointment this week all of his numbers are where they are suppose to be except for his slightly elevated Blood Pressure. His hematocrit level was a 32! That is way better than they expected. Again, for a recap on the hematocrit...Normal people have a level of 40-50, people with an LVAD have a lower rate because their blood gets "chewed" up through the pump so they only expect about a 30 and Dad's was a 32! He continues to keep them on their toes!

How I started my nice long weekend off!

I am very happy to say that Dad is the only one in the family household that does not have a cold! I started with a killer cold Thursday night and shocking as it may seem,  did not work out or leave the house until Sunday morning. Tammy and I went back to the Hall to hand out prizes to the benefit winners on Sunday. 

I took a nap and went to bed early Sunday. I needed the rest if I was to get over this snot. Right around Sunday, Mom started getting a sore throat. She now has a cold wayyyy worse than I did. I feel so bad for her :( Needless to say, I hope Dad isn't taking it personally that we are avoiding him. We just don't want him to get sick!

P.S. Airborne def. shortened the length and severity of my cold. I swear by it. The only catch...find a pharmacy or supermarket that hasn't sold out of it!!!

We were lucky enough to have a little visitor come to keep us company on Saturday night. She smiles and makes you smile too :) Our newest family addition Julie came by to celebrate her 6 week birthday with us :) Her Mom, Dad and Big sisters went to see Sesame Street Live at the Hanover. From what I hear it was quite a show :) Lilly showed us a few pictures too. It looked very colorful from the photos.

Lilly came over to play on Saturday. They asked her where she wanted to go she said Grammy Papa's. So to Grammy Papa's she came complete with new sparkling purple shoes which she informed me "they bought at Target." So if anyone is looking for new, purple sparkle shoes, word on the street is that Target has em!

On Sunday a Prayer shawl was presented to Mom and Dad from the nice people of St. Mary's Prayer Shawl group. They made two very beautiful shawls and Dad's even had a little angel sewn into it's knit. The sun was shining in the window right on the angel, making her almost glow. I hope it is a good sign that things will get better soon.

On Monday, I was treated to a girls Day Out with Tracy and Adele. We went to Boston to the Children's Museum. It's my first trip to Boston in a LONG time, for something other than Brigham and Women's. We had a blast! There was so much to do and see you could spend a week in each section and still never play with everything. It really is a fantastic safe place for kids to play.

On our way out, I took this picture of Adele looking at the big giant milk bottle in front of the museum. Tracy and I stood in the exact same spot 35 years ago and did the same thing! The photo is timeless.

So all in all a week of ups and downs, but, we made it through another week and no calls yet. Days are sneaking by with no call from B&W of a heart being available. So we move forward...and will wait another week, and another for how ever long it takes. We may be giving up days, but we are not giving up hope and with hope and faith, family and friends anything is possible! 

Please keep the prayers coming, we still need them everyday. Your prayers is where our strength comes from. Keep up the well wishes and prayer and until next week, the last week of January, I wish you all warmth! May the warm weather be upon all of us soon so we can go out and enjoy the outside :)

Until Next Tuesday,

Laurie

WOW!

It's a simple word, WOW...  because there is no other way to express it!

This was our family picture taken at the event on Sunday

It wasn't easy to get everyone looking at the same time. This one is my favorite because even baby Julie is smiling. It's as if she knows how happy the event made all of us.

On Sunday we were overwhelmed with the outpouring of support. We had a really busy weekend...the fundraiser wasn't our only great news this weekend. My brother Joe and his girlfriend Lauren got engaged!!!!! They went to the pizza place where they had their first date. Everyone, including Lauren, were surprised! Lilly and I will have another LP in the family. Lilly Palumbo, Laurie Palumbo and very soon Lauren Palumbo. We may just start our own fan club! The three amigos move on over for the three LP's!  They have decided to have a Spring wedding. There is nothing like a nice spring wedding when all the flowers are in bloom and everything is fresh and new. With a little luck Dad will have a new heart for the special occasion! That would just be incredible and a true gift.

This group of people and so many more are part of our "dream team" Never in our wildest dreams did we anticipate the turnout that took place on Sunday. There were so many people there supporting Dad and our family. The best part was Dad was there to greet everyone! We were thrilled that he was well enough to join us :) 

The event was not just one day. The event was planned over 6 months! The blood, sweat and tears that went into this event made it the event of a lifetime.

Tammy and Marie Mastro came up with the idea six months ago. They approached Fr. Foley, the pastor of St. Anne's Church in Shrewsbury and asked if they could have a fundraiser for my Dad to help offset all of his medical bills and expenses. Fr. Foley not only agreed that they should have one, but, he jumped on the committee rolled up his sleeves and got to work!

The amount of planning and the logistics that went into making this a success was just AMAZING! Meetings were held at the church while other meetings took place at Leo's Restaurant and St. Vincent's Hospital. So many people from so many places came out to help. The response was overwhelming. From old neighbors who came back to the neighborhood to support Dad to our GIANT extended family. It was like a wonderful reunion. If I wanted to have a party and had no limit to the amount of people I could invite, it would be what Sunday was.

The food table and dessert tables were UNBELIEVABLE! There was SO much food. My Uncle Tony Mastro, Tammy and Marie's Dad, would have been so proud to see what Marie and Tammy did. Marie and so many people worked tirelessly in the kitchen all day. Actually, Marie made food for me Friday, Saturday and Sunday! I was VERY spoiled. I have so many food allergies and Marie made sure that there was something for me to eat everyday we were there!

Our youngest guests had a great time at the event :) This is my newest niece Julie and her cousin Maddie who is a few months older than her. They were so sweet.

We had a fantastic photographer Joseph Gonzalez-Dufresne. I am hoping to put a few photos from the event onto the blog with his permission. He took a lot of photos and I am very excited to see them all. Special thanks to Adam Towner for finding Joe and sending him our way. He was nice enough to take the day off and spend the day with us taking photos free of charge! Thanks Joe!

Lilly and Kylie took a cyber break at the event to catch up on Auntie's blog! Seriously they are 20 months and almost 3 and 1/2 and they already are iphone users. Apple eat your heart out...no pun intended!

There will never be enough hours in the day or days of the week to thank everyone who made Sunday a reality. The funds raised will be a huge relief from the bills that are amounting by the day. It amazes me that they can expect everyday people to pay the amounts listed on some of those bills. I know health care is expensive and they do cover a lot, but not enough. In order for a person to survive he must rely on the goodness and generosity of his family and friends to go on for another day. If it wasn't for the wonders of modern medicine, Dad would not have been with us Sunday. He is one of the lucky ones who has been receiving the best of care from some amazing doctors and nurses starting with Dr. Stephan Pezzella. He was Dad's doctor when he had his first heart attack all those years ago. He keep Dad going for more than 20 years before Dad's condition became one that he recognized was not treatable in Worcester and referred him to the good doctors of Brigham and Women's. 

Dad is doing pretty well now since his 10 day set back following Christmas. We spent new year's in the hospital but we made it home in time for my birthday, the Epiphany. The wise men didn't have a heart for Dad but they did move him up to the top of the list for two weeks. Dad is on level 1A status for two weeks! They moved him up because of everything that happened those last days of December.  Now more than ever we need your prayers for a new healthy heart to come in! If a heart becomes available in the next two weeks Dad will go in and get the ultimate gift. 

Please continue to keep Dad in your thoughts and prayers. We still need your prayers to keep us going. I can't wait until Dad gets a new heart and we can focus our prayers on someone else who needs a lot of prayers so we can give some back.

Thank You, Thank You, Thank You from our whole hearts. The generosity people showed to our family this weekend is something that not everyone will be lucky enough to experience. We are so blessed to be surrounded by such love and friendship. It was so amazing to see all of the people there. There were people we haven't seen in a long time and they heard from someone who heard from someone and they came. I had past students and friends from as far back as elementary school who came back to support us! Thanks will never be enough but please know how thankful we are for all of you and we could NEVER make this journey without you.

Until Next Tuesday,

Laurie

Family and Friends are Everything!

The Fundraiser is Only 5 Days Away!!!

Sunday, January 13, 2013

 11:30 a.m. - 4:30 p.m. 

St. Anne's Church, Shrewsbury, MA

Tickets are available from committee members and at the door the day of the event.

Dad's Fundraiser is fast approaching and this committee has worked tirelessly with our entire extended family. I have often been made fun of for having so many cousins. I can't go to far without running into a family member and I can say I have never been so proud to be part of such a wonderful family! 

This all started when Tammy and Marie Mastro asked Father Paul O'Connell if they could hold a fundraiser at the church to help with Dad's medical expenses. That day grew into this group which gets bigger and bigger at every meeting! We have had so many generous people give of themselves to make sure this event is a success. So many people have made so many wonderful things to raffle and auction.

Tammy is doing a great job organizing the meetings and keeping us all informed and delegating tasks. Brendan and I have been doing things here and there to help as much as we can with the schedules we have been keeping in the last month it has been difficult. When we add up the month of December it turns out that we were in the hospital more than we were out :(

Dad visited the illustrious Shapiro Center at Brigham and Women's today for a check-up. They let him go home on Friday as long as he came back on Tuesday and Thursday this week. Mostly the appointment went ok but his blood pressure is on the rise and they are trying to get it down. They also increased the diuretic to make sure he doesn't regain too much fluid. 

He rests a lot, and so far since we have been home, has not overdone it. 

Last night Mom made dinner for my birthday complete with a chocolate cake! Mom made me a gluten free chocolate cake and Lilly and Kylie helped me blow out the candles on my cake. Kylie wasn't happy with blowing them out once so we did it three times! It was worth it just to hear her sing Happy Birthday :) 

Thanks to everyone who is doing everything they can to help us out. People have been coming out from everywhere to help us when we need it! From little things like picking up the mail and paper to taking care of snow and bringing Dad into Boston for appointments we could not be more grateful! Those who have family and friends like we do will always be blessed. I am certain that we would not be where we are without all of your love and support. Thank you for your continued support and prayers which are always appreciated.

Thursday Dad has another appointment so I will update the Blog Thursday with his progress.

Until Thursday,

Laurie

HOME !!!

START THE CAR!!!

My favorite place to shop at Brigham and Women's is The Shop On The Pike. Its the little gift shop that always has the cutest things. This week since the holidays are over they came out with a few new fun things. The picture above is from a pop up book of flower arrangements. There are 5 to choose from and each one is with different flowers. It would be nice in a patients room that cannot have real flowers. They were very cool to look at.

Today was a day filled with ups and downs. We thought today was going to be leaving day so by 8:00 this morning we had everything packed and ready to go. That was before all the doctors came in. When the Doc. following Dad's case this time came in he wanted to know if infectious disease had been in yet. When we replied that he was the first doctor we had seen all day he went to try and speed things along. 

The infectious disease doctors confirmed what we knew right along...Dad has an infection in his arms. Now he has two types of infection and his BP is a little high and his IRN wasn't where they wanted it. They told him he wasn't going home! Well Dad was none too happy. He said "I did everything you told me to do and you still aren't letting me go home???

After much discussion and consultation they decided to let him come home for the weekend and come back in for a check on Tuesday. We were a little worried but Dad wanted out!

This was our last sunset in 709 and the sky did not disappoint! IT WAS beautiful!

Mike and Linda Curry picked all of us up and we headed home.

This is the Palumbo pharmacy. I dont know how he keeps track of them all.

I would write more but I am falling asleep typing. I will continue my updates from now on back to Tuesdays.

Thank you everyone for everything!!!

Laurie

Hooray For An Uneventful Day!

Home May Be Closer Than We Think !

It has been 48 Hours and so far Dad's heart is "resting" and doing the job it and the pump were designed to do together! All his numbers seems to be where they want them except for the potassium which they keep having to give him. That's small stuff compared to what we were dealing with even 48 hours ago. There have been no V-Tach episodes AT ALL today!!!!! Dad got up and walked the halls  twice with just Mom, no nurses needed!

Auntie Janet came to visit again today and she beat Mom at Scrabble....as it seems she always does. At least this time it was a closer score :) She took us out to lunch at the Mission Grill. It is a really cute place about a block away from the hospital and an easy walk to get there. She also brought me some yummy rice krispie treats :)

We went out to lunch when they finally called to have Dad go down for his testing procedure. They wanted to make sure all the leads in Dad's Device were working properly. They put him to sleep in the lab and fired the leads to make sure they were A-OK. They were all working perfectly and Dad said he didn't feel a thing and felt fine after he was just STARVING.

Brendan, Kerry and the Kids came up to visit again today too. It makes the Day go by so much faster when everyone is here. We waited in the waiting room for a while until Dad got back to the room. The girls love to stand on the ledge of the windows and look out across the city. 

 Lilly was extra silly today while we were taking pictures on my phone. She couldn't stop laughing and it was contagious :)

Little Julie woke up for a little while so we could see her pretty eyes 

 The girls took turns sitting with Papa. Kylie wanted to show Papa her new shoes...Nike's :) Lilly told Papa about the fun stuff she did at Gymboree today with Mommy and Kylie. Just the big girls got to go to gymboree today. 

The girls are trying to watch Brave on TV but as you can see from Lilly blocking her ears sometimes Papa's tests can be a little loud. They didn't miss a beat though. Never worried about the noise or anything.

Dad's partner in crime, Kylie! Dad had been asking for a Milky Way for the past few days and we wouldn't give him one until all of his levels evened out. Everything else he was eating was being closely monitored and we didn't want to screw anything up. So today he was allowed a treat. Lilly was more than happy to share his treat and Kylie went back for seconds...and thirds. In reality Dad ate about a third of the candy bar :)

When the movie was over and the girls finished their dinners. They wanted to play a few games on the iPhone and iPad. They played a memory game and drew some pictures. They were really cute!

Tomorrow they are sending an infectious disease doctor in to check out Dad's arms. Both of his arms and hands are swollen and read and several sited where the IV's were look like they may be infected. They want to take care of the infection locally before it spreads and becomes a systematic infection and a really big problem! They have been using heat therapy for three days but they seem to be getting redder which the doctor wasn't happy with when he saw them tonight.

So it was another day of waiting but at least we had great company and the waiting in the end turned out to be good news.

Thanks to everyone who has been calling, emailing, texting, writing, visiting, helping with the fundraiser, and making this less painful for all of us. We would never have been able to do this without you and we appreciate all that our family and friends are doing for us. Keep the prayers coming :)

Until Tomorrow,

Laurie

Still Here In The New Year !

And we wait...................and wait........................and wait........................and wait....................and wait!

I am starting this Blog entry with a picture of the sunset because that's how long we waited for Doctors to come in and check on Dad and talk to us! So much for it being a better day with more staff! 

When they FINALLY came in they lowered his pump speed to try to counteract his levels dropping a bit when he stood up.  All other numbers look good. Hematocrit numbers are in the mid 20's and rising which is great! 

Auntie Janet came in today to hang out with us...and beat Mom at Scrabble...AGAIN! She brought me a really cool book for my Birthday. It's based on 1,000 homemade cards. There are some great ideas in the book. Every time I open it I find something different :)

The third doctor that came in told us they were going to send Dad down to the lab tomorrow, sedate him and test his internal defib to make sure it is working correctly. They want to make sure that when it fires that it does at the correct power. There is a concern about one of the leads he has, it is under advisory or basically means recalled. They said they have only seen 6% of the cases where it has actually had an issue but we and they don't want to take any chances. So no food after midnight...again.

Gabby came to visit us today! We were so excited to see her :) When she got here Dad showed her his "Alien Skin" arms. They honeycomb shaped heat therapy wrap they are using to take the phlebitis puffiness down leaves honeycombed shaped marks on his arms...like alien skin.

Dad did not get up to walk all day because they told him to lay low. We were waiting for the doctor's ok. They came and confirmed no Vtach episodes today so they said he could get up and walk.

Dad, Mom,Gabby and I walked the halls for a little bit. We didn't want to push it. 

Tomorrow, Auntie Janet is coming back in to visit and hang out again. It will probably be another very long day of waiting. As it has happened in the past, they say you are going down to have a test and you  could wait all day. The worst part is not being able to eat while you are waiting! It seems like meal times at least break up the day and remind you of what time it is. 

Thank all of you again, for all of your calls, texts, e-mails, visits, well wishes and prayers! 

Until Tomorrow,

Laurie

What Year Is It?...Oh, The New One!

 HAPPY NEW YEAR

As we have been doing for the last few mornings we woke up to Dad having a V-Tach episode. He didn't move. He was still lying in bed when it happened, as it did yesterday morning and the morning before that. The nurse came in to make sure he was ok. She made sure that his pacemaker paced him back to normal without a shock and paged a doctor to come up to speak with him. The Doc that came up was an intern. She did not seem too concerned, because he was able to pace out of it without shock. She said they would continue to monitor his rhythms and we would have to wait for Dr. Lewis to come in...in an hour! 

This is again why I hate holidays and weekends here! It seems like we have been waiting for answers since FRIDAY!  When Dr. Lewis did come he was great. He increased two of Dad's meds and told them no more IV's. If he did need more IV's later on they would put in a central line. Dad has developed phlebitis in both hands and arms, from the IV Meds. This is typical for the type of drugs they were pushing through his veins. While they are getting better, they were like balloons yesterday. He told the nurses they should watch for his hands in the Macy's parade because they would be floating by tethered by the balloon guys! He was referring to his fingers as Jimmy Dean sausages! Still joking... which is great :)

Brendan and Kerry brought us some new clothes and supplies today including Dad's much needed breathing machine. He was not loving the one they had here so he just stopped wearing it. We just needed a few things from home and Bren did a great job following my descriptions of where to find things. 

We were very lucky to have some special visitors today!

Kylie is not very happy that Lilly
wants to sit on the
window seat too! Lilly gets "the look"

Brendan, Lilly, Mom,
Kerry and Kylie have a snack

Little Miss Julie's first visit with Papa at the hospital.
She is cute as a button :)

 Lilly and Kylie ready for lunch !

The girls were very excited to see Papa today...especially Kylie. Papa is Kylie's favorite!  It was so good to see them. They came with their gifts that Santa had brought them to show us. Kylie also brought one of her favorite babies that Uncle Joe and Lauren gave her for Easter. 

Papa ended up with Kylie's baby and Lilly's Rapunzel!

MOVIE TIME!

Dad was very happy they came. He almost told Lilly that the LORAX was still on the movie channel...lucky for us her new favorite movie is Disney's BRAVE! So since we have only seen that once it was not as painful as the LORAX for the 75th time!!!

While they were watching the movie Mom ordered lunch for Dad. They had a special holiday menu today. At least they try and make the best of the holiday's for people who are stuck here. 

The BIG SISTERS watched Brave with Papa and Little Julie spent some quality time with Grammy while Brendan and Kerry grabbed lunch. It's not often that they are able to eat lunch together without the kids so I am sure it was a nice break for them too. The kids keep them pretty busy but they are such great kids, they are truly lucky. They brought a smile to anyone who came into the room today. Doctors, nurses, housekeeping, dietary, social workers etc. all smiled when they saw them.

Kylie and Lilly had a few pretzels and animal crackers for a snack. While Lilly sat and ate hers a little at a time, Kylie chose to use hers like a cigar! Brendan and I thought she looked like the character from the old A-Team episodes...the one who always had a cigar in his mouth. She makes us laugh. She is quite a comedian. Maybe that is why Papa is her favorite...they are both Jokers!

Grammy walked to the door with the girls to say goodbye. We were sad to see them go but they had a busy road ahead of them today. We hope to see them again soon. I have been promising Lilly she could have a sleepover on school vacation. Unfortunately, we spent most of school vacation here, but, she is a very patient kid and understands. While everyone was packing things up she walked over to Dad and said "Papa, I hope you feel better" it was so sweet. 

Tomorrow will probably be a very busy day, full of tests and hopefully some answers. We just want to get Dad back to normal levels and rhythms before we go home. We are thankful he is here and receiving great care. They are running on a smaller crew, but they are still a quality team who help each other out.

Thank you all for your thoughts, prayers, calls, texts, e-mails, cards, snacks, company and for being there for us every step of the way. I have said it before but I can not stress it enough, we never could have come as far as we have without all of you...our support team is immense! We are truly blessed.

Until tomorrow,

Laurie