Jewelry Party Fundraiser

I have to share about the amazing fundraiser Aunt Lorraine and Uncle George had on Sunday for dad. They had a jewelry party fundraiser, and it was a great success. All women love jewelry! (Uncle George hid in the basement because he just didn't feel right around all of us women!)

Aunt Lorraine was an amazing host and thought of every little detail for this fundraiser. She even had a tree full of homemade heart shaped cookies. It was great to get together with family and friends. It is amazing how generous and supportive everyone can be in tough times like these. This was a great start to our fundraising plans we have for dad's transplant and we couldn't have done it without Aunt Lorraine and Uncle George.

This sign says it all! (Sorry for the lighting)

The super cute heart cookie tree

The goodies!

Sophia- She loves to pose for the camera

From Left to Right
Noami, Jennine, Lexie, Aunt Lorraine (Beautiful hostess), My Amazing Mom, Me and Alisa

Some of the ladies shopping

Beautiful jewelry

All the amazing women who attended the party to help support this new journey for dad

Keep Your Head Up

We found out yesterday that not only does my Dad need a heart, but also a liver. It didn't come as a complete shocker. I was there at the appointment with them when they met with the liver doctor who told us this might be a possibility. In the back of my mind, I knew this could really happen. We laughed it off as if there's no way! As the week went by, I had this feeling that the biopsy wouldn't come back okay. It seems my poor dad can't catch a break, so why not throw in a liver too!! During this whole process, I sit back on  rough days and listen to this song, which brings peace and makes me feel like everything will be okay.

Keep Your Head Up

By Andy Grammer

I've been waiting on the sunset

Bills on my mindset

I can't deny they're getting high

Higher than my income

My income's breadcrumbs

I've been trying to survive

The glow that the sun gives

Right around sunset

Helps me realize

This is just a journey

Drop your worries

You are gonna turn out fine.

Oh, you'll turn out fine.

Fine, oh, you'll turn out fine.

But you gotta keep your head up, oh,

And you can let your hair down, eh.

You gotta keep your head up, oh,

And you can let your hair down, eh.

I know it's hard, know it's hard,

To remember sometimes,

But you gotta keep your head up, oh,

And you can let your hair down, eh.

I've got my hands in my pockets,

Kickin' these rocks.

It's kinda hard to watch this life go by.

I'm buyin' in the skeptics,

Skeptics mess with,

The confidence in my eyes

I'm seeing all the angles,

Starts to get tangled

I start to compromise

My life and the purpose.

Is it all worth it,

Am I gonna turn out fine?

Oh, you'll turn out fine.

Fine, oh, you'll turn out fine.

But you gotta keep your head up, oh,

And you can let your hair down, eh.

You gotta keep your head up, oh,

And you can let your hair down, eh.

I know it's hard, know it's hard,

To remember sometimes,

But you gotta keep your head up, oh,

And you can let your hair down, eh.

Only rainbows after rain

The sun will always come again.

It's a circle, circling,

Around again, it comes around again.

I say only rainbows after rain

The sun will always come again.

It's a circle, circling,

Around again, it comes around

But you gotta keep your head up, oh,

And you can let your hair down, eh.

You gotta keep your head up, oh,

And you can let your hair down, eh.

I know it's hard, know it's hard,

To remember sometimes,

But you gotta keep your head up, oh,

And you can let your hair down, eh.

Keep your head up, oh,

And you can let your hair down, eh.

Keep your head up, oh,

And you can let your hair down, eh.

Keep your head up, oh,

And you can let your hair down, eh.

I said ohhhh no no no no

Why My Dad?

( On Sunday, Aunt Lorraine and Uncle George hosted an amazing jewelry party fundraiser for dad. Please know that details and pictures are to come...)

If we were all on a baseball team and we were in the playoffs on our way to the World Series, we would have lost our chance today. A wicked curve ball was thrown our way and we were not ready, our glove was not open. I can't even believe that I am sitting here and actually writing this blog. I swear this is a dream and someone is going to shake and wake me, or at least that is what I am hoping, but sadly this is our life.

So back up a few days and one post and that puts us at dad's liver biopsy. The one we thought would be a piece of cake and the results would come and dad would be back on the transplant list, lickety split, but the path already paved for us threw us another bump. This time it was a huge bump and one no one, not even dad's doctors saw this coming.

I spoke to mom and dad this morning and everything was fine. I asked dad if he heard anything about his results and he said, nothing yet. That was that and we all went on with our day. Normally I talk to dad multiple times during the day, and I should have known something was wrong when I didn't hear from him all day. Chris comes home from work and looks like he is holding the world in, and I still didn't think anything of this. He sat down and started telling me about his day, and then he hit me with it. "Sand, I talked to dad on the way home from work today and he wanted me to come and talk to you." I knew it, I knew something was wrong, very wrong. The tears were there and coming quick. " Dad, got the results from his liver biopsy today and they were pretty bad. The doctors told dad that there are serious signs of liver damage and the only option at this time is for dad to get a liver transplant." No words and tears were all that were coming out of me. Chris kept talking and trying to tell me that this was all okay and dad will be better off. Chris looked at me and said, "Sand, we need to be strong for dad. I promised him we would be strong." Our strength will always remain but there are times when we feel broken down and just need to let out a good cry.He told me that dad couldn't bring himself to tell me, so he needed Chris to tell me, and my heart broke. My dad was so upset and hurt, he wasn't strong enough to tell me.

I refused to listen, this couldn't be happening. Is this a joke? There can't be anyone else out there in this world  that has this many things thrown at them all the time. Dad never catches a break, never. Why can't the man just get his heart and move on to a new life? Now he needs a liver. Dad will have to go through tests and evaluations within the next few days and will hopefully be back on the transplant list for both organs in two weeks. Both organs, two, this can't be happening. We were all just accepting the fact of a heart transplant and now we are all shocked at this news and are trying so hard to let it all sink in. There is no doubt in my mind that we will be fine and we will rise above this, like we always do, but this is so hard. I cried for hours after Chris told me. I am not sure there was one reason why I was crying, there were so many reasons. Why my dad, my poor dad who just wants to live his life like the rest of us, the man who is my hero, the man who gave me away on my wedding day, the strongest man alive, why him? Please pick me, take me, give him a break, he is so tired.

Of course, there are pros and cons to this new addition to dad's journey. The surgery will now be 10 hours long instead of 4 and the recovery will be a lot longer and more intense. Dad has less of a risk for rejection now because the liver is the major organ that has problems with this, but since dad is getting a new liver there should be less of an issue with rejection. The doctor was explaining the surgery to dad and the different options of how they may go in and replace the organ. They will either go through the chest or through a Mercedes emblem shape on his side. Dad is very excited because this will be his first taste of a Mercedes in his life! Oh the little things, to bring light to a hard topic.

Chris and I went to see mom and dad tonight. I just needed to see him and hear all of this from him. I made sure to get all my tears out before I went. I spoke with Nikki and James and let my tears out with them as well. We all check on each other and make sure we are all standing strong. The distance between us can't keep us from holding each other up through times like this. At mom and dad's we laughed and joked and discussed the liver transplant and what all this means for dad. Mom and I agree that dad will out live all of us because he is getting a big tune up and we are all just walking around with our old organs! Dad is one lucky man because he gets a second chance at life, as scary as this all may be for us.

We are all looking to the bright side of this and we know that in the end our dad will be much better off with both organs. Although the end seems so far away, we know it is coming soon and we will be able to look back on all of this in amazement at the journey we traveled to get dad to his second chance at life.

Another One For The Books!

Well, here we are another round of doctor appointments down the drains and it was one for the record books. Mom, dad and I made the journey in to the city and enjoyed another day in our second home, the University of Penn. Dad was scheduled for a liver biopsy today and it is the obstacle that is standing in the way for dad to be placed back on the transplant list. So we were all ready for this to be over and for dad to get back on the list so he can get the heart he needs to move on with his life.

In the back of our minds we were thinking, "Is dad going to come home with us today?" Let's be honest, there is NEVER a time when dad goes in the hospital for a simple procedure and comes out to go home. There is always a reason that dad has to stay for at least a month. Well, surprise, surprise, dad was released and sent home! Woo hoo, a new accomplishment for dad! He overcame a simple procedure and walked out the same doors he walked in the morning. Dad did well with the biopsy and we should have the results in 2-5 days. We are confident the results will come back good and dad will be back on the list and transplanted in no time!

After the biopsy we headed over to the transplant clinic to see dad's doctors or people who have become our second family. We decided to get dad a wheelchair because the walk was long and dad was still woozy from the anesthesia. Well, I thought I was in pretty good shape, but man, pushing dad in the wheel chair was tricky. There were tons of ramps we had to go up and I found it to be easier to do a little run while pushing, more momentum. Dad was loving every minute of it and for some reason mom kept walking right in front of the wheel chair and it was hard to stop because I had a nice little flow going. We really are a walking mess, it is quite the sight to see!

Well, once we got in the doctor's office the sight we made in the hallway walking here was nothing compared to the scene we caused in the office. We have so much fun at the doctors. Who would ever imagine a doctor visit being so fun? We laugh our heads off merely at the expense of dad. We all like to pick on dad especially the shoes he is wearing and don't ask me why, but his doctors are obsessed with his shoes. Amongst all the laughing and making fun of dad, the doctors were very happy with how well dad was doing and they are going to try their hardest to get the results soon so dad can get his heart.

So today, another one for the books for more than one reason. Dad is another day closer to his new heart and we all can't wait for the day when he can run up ramps pushing us in a wheelchair!!

Spring Break

To most college students spring break is about partying, going away, doing nothing, sleeping in and having fun. My spring break was about going home and spending much needed time with my dad and family. I did not sleep in or party. I was up early and learned how to change my dad's bag. I was scared at first, but I knew that if my sister could do it, so could I. We spent a day in Penn. We went to his doctor appointments. I was able to meet most of his doctors, and see how much they love him. My dad always has a smile on his face. The doctors would come in just to say hi and see what shoes he was wearing. They wanted to make sure they were cool. It was like a party with him, laughing and having a good time. But mind you, we were in a small examining room in the transplant area. I was also able to be with him when his visiting nurses came. I wanted to see what a day in the life of my family in PA was like. But all in all my spring break was just perfect. I was able to just hang out. We spent great family time. It was awesome. I would not want any other break. It was great to wake up and see mom and dad there and be able to kiss them goodnight like I used too. It was great to see my sister, and be able to be with her. It was great week. That flew by, and was sad to see end. Like they say, time flies when your having fun. I wish it would have slowed down, but I will be home again soon.

Looking handsome!

No matter what the bag looks like, He will always be handsome!!

Waiting for a New Engine

Another week of doctor appointments down and of course always an interesting visit with new finds. The latest with dad is that his liver enzymes are elevated, so dad is still a status 7 (on hold) on the transplant list. Doctors don't feel fully safe putting dad back on the list until they now figure out the issue with his liver.

I can remember the call from dad last Friday telling me the latest news. We were all waiting for dad to hear from Nicole to tell dad he is back on the list, but a call came with different news. I was on my way home from visiting my students in Philadelphia. I always call dad and let him know I am safe and I could just hear it in his voice. This is how the conversation went:

"Hey, did you hear about your blood work?"

"Yes, everything came back fine and normal...(a very long silence)... but they have now found that my liver enzymes are elevated and I have to see a liver doctor now. I can't be put back on the list until I see him."

Of course, I just reacted and didn't fully think through my response, which is kind of funny now, "Dad, do you need a liver transplant now?"

"No, they may just need to take a biopsy and see what is going on, but it is probably just my medicine"

"Dad, I just don't get it, why now, why is everything being found now? Hasn't this been happening forever?"

"Sandi, I know I am asking the same questions. I just want to sit here and cry."

A HUGE lump in my throat, I swallowed and pretended to be strong, "Dad please don't cry, you know it is not going to get you anywhere."

"I know, this is what it is, and there is not much I can do about it."

The phone call ended and a deep breath came from me and a whole lotta tears. I immediately sent a text to Chris and called mom. What now? How much more? Come on, can't someone just cut him a break? Hasn't he been through enough? Just let the man get his heart!! Of course mom and I shared our thoughts and frustrations with each other, but in the end we both realized that this is all a part of the journey and we will once again overcome this like everything else.

So fast forward to today, dad went in to see the heart transplant team and the liver doctor. He got an awesome bill of health from the heart transplant team and they told dad if the liver doctor gives him a clean bill of health he can get back on the list this afternoon. Well, now why would the liver doctor give dad a clean bill of health? That would not be normal life for us. The liver doctor decided he needed to take a biopsy of dad's liver to make sure it is absolutely nothing. Just another test on dad's track record.

Maybe dad just needs a tune up before he can get his new engine... 

Distance....

Hello from Middle America.  Approximately 890 miles from where my father sits now with an awesome multidimensional fanny pack.  I know how terrible it must be to carry that thing around all day, but at least he can tuck his wallet, cell phone, and heart pager in there.  It is hard to believe that dad is probably 30-60 days from the inevitable....a new life, a new beginning, a new challenge.  Not many people get a second chance at life, but if there was ever a person who deserves one it is my dad.  That sounds cliche but I honestly feel that man has been through so much that it is about time for him to relive his early 30's.... believe it or not; that is the last time he was healthy.  You would never guess he was living with half the heart function as you and I.

Being so far away has proven to be very difficult during times like these.  Not being able to drive to the house and hang out with my dad when he is down is tough.  I know my Mom, Sandi, and Chris have everything under control, but like everything else we are a unstoppable team when all together.  I guess I have come to the realization that there is a pretty good chance I will not be able to get to Philly in time for the surgery....really it all depends on what time the call comes, and what state I happen to be in at the time....Amongst the excitement for my dads new life, comes the excitement for us all to be together again.  I can only believe the eagerness for dad to see his grandchildren will ease and speed the recovery period for him.  As I write this Gabby is lying on top of the couch like a dog watching TV, and James is running around the living room acting like a ghost jumping on Gabby and Nikki.....how can anyone not laugh at these 2 crazies?

Hi Poppa!

Kisses...

Many Gifts...Large Impact

This is a post that has been long overdue. I have been trying to write about this post for months but some events have happened that needed to be written about first. This goes all the way back to Christmas (I know, I am ashamed I have waited this long to share something this special).

Everyone was in from Missouri and we were all together as a family. Before we put the kids to bed on Christmas Eve and got ready for Santa, Dad sat us all down and handed each of us a white gift bag decorated with hearts. He got his real serious voice on and we knew a speech that was going to bring tears was coming.

He said, " Before you open you bags I just want to say something. This is just a little something to remind us of this journey. This has been a long road and I am not sure if I could have done it without all of you." Of course he said a lot more, but I didn't want to quote him incorrectly. He was talking from his heart about his heart and the journey we have all been through together. We also talked about the road to come and how we will handle it together. Although tears came to all of our eyes we were all so excited about what is to come and the new future for our dad.

We all ripped into our bags at the same time and this is what each of us found:

A scroll of paper reading:

My New Beat

" It is not the heart itself but what is in it that fills a life."

A heart that is so full of love can never be replaced.

My heart is overflowing from the love of my family. 

I am blessed knowing that this special love

Is what keeps the beat continuing, be it old or new.

I look forward to receiving my special gift and living 

The rest of my life with the people

I love the most. 

For I am poor and needy,

And my heart is wounded within me...

-Psalms 109:22

Prayer for the New Heart

Thou who art over us,

Thou who art one of us,

Thou who art; 

Give me a pure heart, that I may see thee;

A humble heart, that I may hear thee;

A heart of love, that I may serve thee;

A heart of faith that I may abide in thee.

Amen

After reading this we looked in the bag through tear filled eyes and saw this:

Heart jewelry boxes for the girls engraved with:

"Dad's New Beat"

These pictures don't do the jewelry boxes any justice. They are beautiful and such a great reminder of this amazing journey for dad. 

Snow globes for the kids each with their own picture in it. James got a car and Gabby got a carriage engraved with:

"Papa's New Beat"

Once again the pictures do these no justice at all. They are absolutely amazing and so precious. The wording of "Papa's New Beat," is a great memory for Gabby and James when they grow up and look back at them. They can remember all that their Papa has been through and never stopped living. A great lesson to learn and live by. 

Desk organizer for the guys also engraved with:

"Dad's New Beat"

I am not going to repeat myself, so please remember these are much nicer in person. These are perfect for the guys because it allows them to remember this journey and an example of how they should live their lives, like our amazing dad. 

After opening these from dad it didn't matter what else was under the Christmas tree because no other gift brought as much of an impact and message as these did for us, then and for the rest of our lives. 

\

This Could Only Happen To Us

Sunday was one of those days. It started off with Jim's pump alarming telling us the bag was empty. The nurse was not going to arrive for another 15 minutes. We decided that we were going to try and change the bag on our own for the first time. When the nurse arrived she said we did a great job except for skipping one step, which she fixed. After she checked Jim's vital signs she gave him a good bill of health and left for the day.

It was a rainy day so Jim decided he wanted to go to the mall to walk. So off to the mall we went for a nice stroll. While in the car on the way to the mall we heard another beep. We thought that is was just a fluke but for some reason the pump continued to beep each minute that passed. Before entering the mall Jim decided to call the infusion team for their opinion on the beeping. The nurse was not sure why this was happening and said she never heard of this before. She said she was going to contact my nurse for further assistance. While we waited for the call we went in the mall so Jim could exercise. Today he walked 717 steps, which was another great accomplishment. All throughout the 717 steps the beep continued to sound every minute.

We received a call from the nurse and quickly returned home to meet her. When we returned home the nurse was here and I could tell she was a little confused herself. The nurse was looking at the pump and said that everything was working perfectly and she was not sure where the sound was coming from. This lasted for an hour an a half. Within this time she tried everything from, changing the pump again, drawing blood, flushing the lines, changing Jim's dressing on his pic line and even made numerous phone calls. Now the pharmacist, doctor, coordinator and delivery staff were all on high alert to bring us another pump.

At this time I could look at Jim and see that he was clearly upset. He looked at me and said, "Please tell me I don't have to go back to the hospital." So I helped Jim inside and sat him down and allowed for him to take a breath while the nurse continued to try and find the cause of the beeping. As I was standing next to Jim making sure he was okay the beep alarmed again and it came to me, the beep was coming from another place in the house. At this time I am now running around the house finding all things that could possibly be letting off a beeping sound. I took and hid cell phones, back up pumps, phones and pediometers. After all of this I realized that the sound was coming from the bag that holds the pump and not the actual pump. We looked and saw that is was the beeper in Jim's bag that was letting off the beeping sound every minute.

Checking the pump to make sure
it is set up correctly

After we finally realized what it was we all looked at each other with a sigh of relief and each of us let out a loud belly laugh. The nurse then had to call everyone and let them know it was a false alarm and everything was okay.

So just another chapter in the life of Jim and Jennise. I really think I am going to take my kid's advice and start up our own reality TV show, I think it could be a large success!

When we realized it was the beeper making the beeping
sound

Everything is always okay in the end

Camera Study, Status 7, Coming Home...Oh My!

I am making a vow that I am going to be a better blogger about all of this and the upcoming days leading to dad getting his new heart. Before I do that I need to get caught up with last week and all that happened.

So here goes...

Monday:
The doctors have decided to place dad as a "status 7" on the transplant list, which means he is "on hold." This status means that if a heart were to come in dad would not be able to receive it at this time. This was done because of the upcoming tests dad had during the week to identify the area of internal bleeding, which is the cause of his low hemoglobin level. The doctors wanted to identify the issue and make sure dad was completely healthy before transplant. If all of this were left untreated dad could bleed out on the table in transplant and/or have other medical issues. Dad's doctors kept telling us that dad is so high on the list that they can not take any chances. Dad will only stay as a "status 7" for about a week and then he will be placed back on the list where he previously was.

Tuesday:
This was a very rough day for dad. He had his scope test done today and for the test he was given anesthesia. Dad was given this test so the doctors could look in dad's stomach and see if there were any areas that dad was bleeding, which would be the cause of his low hemoglobin level. Dad has had many surgeries and procedures and many doses of anesthesia, and never once was sick afterwards. For some reason today the anesthesia did not sit right with dad and he was very sick after the test. I was with dad today and he really spent most of the day sleeping trying to get the anesthesia out of his system. Dad looked so sick and unhappy, but he said he was happy for the company because no one wants to be alone when they feel icky. I enjoyed the time with dad and we had a nice and quiet day together.


Wednesday:

Dad was shocked to hear the difference
in our heart beats

Listening hard to hear dad's heart

Today was a pretty quiet day for dad. No tests or procedures. Mom and I were with dad today and we just spent time together laughing and goofing off. Dad was feeling much better from yesterday. We walked the halls a lot with dad and he was doing great! Mom and I had trouble keeping up with him. Today I decided that I wanted to listen to dad's heartbeat after we got back from walking. I am so intrigued by dad's heart and how it performs. I was shocked when I listened because it was hard to hear dad's heart and it sounded like it was in a pool of water. His heart is working so hard. After I listened to dad's we switched and listened to mine and it was amazing how different it was. My heart was loud and beating without the sound of a pool. Dad and I were both amazed. Mom was interested in what we were doing so we let her listen to both as well, and she was just as shocked. It was so interesting to hear the different between both of our hearts. Dad's poor little heart is so sick.


Thursday:

We don't have a picture of the actual camera because
it's still in dad's stomach or at least we think!

This is the case for the camera

Today was a $70,000 day but sadly, we did not get that in our wallet. Dad actually swallowed it!! Today dad did a camera study, which was a pill that dad had to swallow. The camera was in the shape of a pill. Dad says that one side of the pill was blinking. He was not able to put the pill in his own mouth, the doctor had to. This test allows the doctors to see deeper into dad's stomach and intestines. They chose to do this so they can be completely sure that there are no other issues in dad's stomach. This test lasted 8 hours and dad had patches all over his stomach which took pictures all day. The infusion team came in and gave us a preview of what dad's IV pump would look like and how it would work. It was great to see and get a little preview before it became a part of dad tomorrow. Chris and I were with dad today and we had a relaxing day with dad. We walked the halls many times and watched some TV together. We received good news that dad was going to come home tomorrow! We were all so excited!


Friday:
Woo hoo, dad is coming home today! Mom went and picked dad up. Before he could come home the nurse came and hooked up dad's IV pump. Dad received a large box full of all his supplies and medicine that he needs while at home. Mom had to get a wheelchair just to get the box to the car. Dad was discharged and he couldn't have been happier. He was feeling good and was able to stop at the store for a few groceries on the way home. We were all so proud of him. This was his first time out of the hospital in a week and now he had a fanny pack full of medication. He said at first people stared and then he didn't care anymore. Dad did well when he came home and Chris and I came over after work to spend time with mom and dad. It was great to see dad back at home where he belongs. We walked in to see dad at the stove cooking some homemade soup. Dad loves to cook and I was so happy to see he was up and cooking. He is going to continue to live his life, no matter what. He is so amazing.

Dad right after getting his IV pump set up

Dad's fanny pack with the pump. The IV bag is on the bottom
and the pump is on the top.

Don't mind dad's closed eyes but his
first trip to the grocery store with fanny pack

Saturday and Sunday:

Doing what he loves best, cooking a great meal!

Saturday the nurse came to the house for the first time and taught us how to change dad's IV medicine. We all felt much better after she left and we all felt like this is something we could handle together.Chris and I were with mom and dad all weekend. We had such a nice and relaxing weekend together. The guys did some work in the garage and mom and I ran some errands. We all cooked dinner together and just enjoyed each others company. We also walked with dad all weekend. Dad did a great job walking both Saturday and Sunday. Each day he walked abut 1/3 mile, which is a great accomplishment because a month ago dad had trouble walking up steps. Dad is doing great adjusting to life back at home and mom is doing great with making all the adjustments around the house for dad and establishing a routine for each day.

Dad's line in his arm

Dad's new bodyguard, Hunter. Hunter never left
dad's side. He followed dad everywhere.
(Sorry for the poor picture quality and yes, Hunter is
wearing a blanket)

My cute mom modeling dad's strap cover she
sewed for him.