Facebook Updates

I started a Facebook Page

https://www.facebook.com/HopesNewHeart

I have been updating that a lot more regularly.

Please follow our journey there.  I will try to update this blog with the past few weeks, but for now I have been updating Facebook.

Updates

Hope today after getting her hair done.

I know I totally left everyone hanging.  I have been updating Facebook  during the last couple of weeks, but I have completely left out updating this blog.  I am going to give a brief timeline of events to catch everyone up and include some pictures as well.

July 25th - Hope is in the OR at 8:21 pm waiting for her new heart to arrive

July 26th - Hope's new heart arrives at 12:21 am

July 26th - We get to see Hope for a few minutes at 9:06 am.  They have not been able to regulate her blood pressure and we were told to go get some sleep.

July 26th - Hope coded and Dr. Stewart had to manually compress her heart for over an hour.  She was taken back to the OR at 10:39 am and she is definitely going to be on ECMO (life support).

July 26th - We finally get to see Hope again at 3:39 pm.  She is super swollen and on ECMO.  They are pretty sure her brain has been affected as she arrested for over an hour.

July 27th - Hope has continuous seizure activity.  Neurology tells us this is definitely a sign of moderate to severe brain damage.

July 27th - Hope starts dialysis to give her kidneys a rest.

July 28th - Community prayers begin at 9:00 pm EST.  They definitely work!!!

July 29th - Dr. Stewart cleans out her chest, puts in a pacer, and clamps off the ECMO cannula from her right atrium.

July 30th - Everyone feels like the heart is working perfectly.  They are still scaring us with head issues.  Mommy paints princesses toenails.

July 31st - ECMO settings continue to be lowered and Hope is holding her own without any issues. Hope also gets some cool new boots.

August 1st - Hope is off life support!

August 2nd - Hope is doing pretty good.  Still some blood pressure issues, but not bad.

August 3rd - Hope is extremely sensitive to stimulus so dad and mom are sleeping at home.

August 4th - Hope's chest is closed!

August 5th - Hope moves and is starting to wake up more often.  Pacer is turned off.

August 6th - Hope is waking up and opening her eyes.  She is able to move everything other than her left arm on command.

August 7th - Hope is stable and not much planned for the day.

August 8th - They are working on vent settings.

New Heart Prayers

Hope May Have A Heart

Dr. Stewart says preliminary reports are good.  We will know more about 2am then possible OR at 6am with transplant sometime later in the morning.  They will have to start trying to get through scar tissue before they even see the donor heart, so please pray that it is a perfect heart.

I know I am asking for a lot of prayers, but please say extra prayers for the donor family.  They are grieving a profound loss and through it have made the ultimate gift.  We will not know who they are unless they want to know our family, but I have been writing to them since the day Hope was listed.  I pray they will find peace in knowing their heart is beating in our beautiful daughter.  We will cherish this heart forever and pray for the family daily.

I will update as often as possible.  We will know more in the early morning hours, but nothing certain until later tomorrow.

Please continue to be in prayer.

100 Days

100 days ago I never thought we would still be waiting for a perfect heart.  I thought we would be one of the 'lucky' ones that got a heart right after Hope was listed.  We are still waiting for the perfect heart and will wait as long as it takes because we hope it will provide her a long and healthy life.  We know the sacrifice that needs to be made for Hope to get her perfect heart and are thankful that the donor family has been able to spend one more Easter, Mother's Day, Father's Day, and 4th of July with their little one.  Each holiday that passes is a blessing for that family and even though we would like to be home with our whole family, we are also glad that the donor family is getting precious time with their little one.

100 days ago I worried that Hope would spend her days aggravated and mad about being in the hospital so long.  Quite the opposite it true...Hope loves it here and has made friends with so many of the nurses, therapists, and volunteers.  She always has someone to play with and her doll house is her new toy of choice.  She spends most of her day talking someone (usually me) into playing doll house with her.  A Special Wish of Cleveland has done so much for Hope and our whole family.  They bring her toys, food, and play with her every week.  They are the best organization I have ever met and when Hope is feeling better, I plan to get more involved with them and raising money for other families to have the privilege of benefiting from  their generosity.

100 days ago I wondered who was going to watch the boys while we waited.  We have been so lucky that our families have gone out of their way to help.  This summer has been especially difficult and will get even more tricky as my mom starts working full time soon at the Cleveland Fairgrounds.  Jerry's mom has been staying at our house every other week and has been wonderful.  The boys love having her stay there and Destiny has enjoyed using her car this past week.  I love that she has been able to spend time with all the kids and that they aren't driving her totally crazy.

100 days have gone by and we have seen several of our heart friends come and go...several having their Fontan.  It has been amazing seeing these little ones thrive and get in and out of here within two weeks with no complications.  It was our 'plan' for this summer as well.  As disappointed as we are that our plans have changed, we know we are in a great place and we pray every day that the perfect heart comes and we celebrate at home with our whole family.

100 days ago there were two amazing boys waiting for their perfect hearts.  They received them within days of each other in April.  They are both home and enjoying the summer with their families and friends.  We have met other transplant families and have seen their little ones thriving as well.  I am amazed at how wonderful these kids are doing with their new hearts and it fills my heart to think that Hope will be one of them.

I try to keep things light and medically Hope is doing good.  She is medically stable in heart failure.  Her oxygen saturation is around 75-83.  She is on .5 mcg of Milrinone and 2 liters of oxygen.  She has had one little cold and no infections.  She has had a PICC line and NG tube replaced.  Otherwise...medically she is doing good.  I cannot begin to tell you how lucky we feel that she is doing so well.  We have seen so many different situations in the past 100 days and we know that this journey could be so different.

Please continue to keep our family in your thoughts and prayers.  We have felt them and appreciate them so much.

3 Months on the List

Today marks 3 months that Hope has been listed as a 1A for a new heart.  The days keep getting longer as we continue to wait.  The summer is passing and we are spending most days inside...which is hard for the whole family.  The boys are hanging out with their grandmas, aunts, and cousins (and their big sister too) and are having a great time. They have been enjoying their summer and have been spending time outside playing all the time. I am so happy they are able to enjoy the summer...even though I wish I could be enjoying it with them.  We have many years to enjoy time together and giving up the summer is a small price to pay...especially knowing that someone else will not have time to spend with their little one.

Hope had her PICC line changed the other day and another NG tube placed.  Both had been in about 3 months, so it is pretty good they both lasted that long.  When they brought her up to the recovery room, she threw up her brand new NG tube...which sucked.  It was 6:45 and her day nurse had to stay after and put in a new one (Bartok...you are an amazing nurse!)

My thoughts and prayers continue to be with her donor family.  I worry about them all the time.  We have lived with a heart defect and the knowledge that we might outlive our beautiful daughter.  I am guessing her donor family will not have lived with this and it will be a total shock.

Thank you all for thinking about our family and keeping us in your prayers.  They mean the world to us.

PICC Line Change and NG Change Too

Hope's PICC line decided to start leaking last night, so we got a dressing change at 6am this morning.  Definitely not something Hope or I wanted to wake up to this monring.  We had to move her Milrinone to a peripheral IV (which meant placement at 7am).  It has been a long morning and I am guessing the afternoon will be long as well.  She is now NPO (cannot eat or drink) until after her new PICC line is placed...which is scheduled around 1pm.  My little princess is taking this in stride and I am so proud of her.  Her dressing change yesterday and again this morning were not as traumatic as normal, so I am happy about that and hope it continues when she gets her new PICC line.  I am also having them change out her NG tube and put it in the other nostril while she is getting her new PICC line.  It clogged yesterday and I worry that it has been in so long it will just continue to clog...so a change will be good...especially when she is sedated and they can take an x-ray to make sure it is placed correctly.

I know this procedure is not complicated, but please keep Hope in your prayers for an easy procedure, hopefully using the same vein so we don't have to potentially blow out a different vein, and for an easy recovery this afternoon.  Please also pray for peace with her as she cannot have anything to eat or drink and I know she will be begging for something to drink soon.

Happy Father's Day

Happy Father's Day to the best husband and father!  Jerry is an amazing husband who goes out of his way to make sure our family has everything we need.  He works hard and long hours and rarely complains about his job.  He loves us all with his whole heart and we know we come first in his life.

Being a dad is more than a day

More than a thank-you or annual display

Your laughter and caring, adventure and humor

So giving, befitting the honor of father

I couldn’t have picked a better man

To travel through life with our crazy clan

You’re my husband, my hero, and may I suggest

A wonderful father — the best of the best!

Mommy's Birthday

I turn 45 years old today.  I am an older mommy and didn't start having kids until after I got my career off the ground and spent my 20s traveling and having a great time with friends.  I am so glad I waited, but I must say that if I had started earlier, I would probably have 12 kids.  I love my kids and even though they drive me crazy at times, I would still like to have had more.

Through my 45 years, there are few that have been as difficult as this year.  It has always been in the back of my mind that Hope could need a new heart...I just hadn't planned for it to be this soon.  I always anticipated her needing one in her 20s or 30s.  I am happy she is on the list and even though the waiting is hard, I wouldn't trade it for anything.

I am hoping my 45th year is a year of change.  I am going to stop smoking and Jerry and I have both come to agreement that we need to quit now and not wait any longer.  I am hoping it will not be as bad as I am expecting...I have a lot of tools that will hopefully help me become and remain successful.

3 Months in the Hospital

Hope and Dr. Boyle - he does her hair every day now!

Today marks 3 months that Hope has been in the hospital.  She has been on the list for 71 days...that seems a lot longer when I actually type it out.  This past couple of weeks have been really different and I think we are just getting impatient with the waiting.  I hate that we feel that way because we know that in order for Hope to receive a heart someone else will need to say goodbye to their little one.  Spending a lot of time in the hospital can try the patience of anyone and we have found ourselves getting edgy this week with each other and family.  This hospital stay has shown us how wonderful family and friends can be and we thank everyone that has come up and visited and helped us these last few months. Sadly, it has also shown us that even though we feel and live the seriousness of everything that is happening, everyone around us has their own issues and time that they need to spend that do not include us.  Our feelings have been hurt a lot and we need to figure out how to get through this and not hold our current feelings toward anyone once we get past the transplant.  It is hard, but we will get through and we will continue to lean on people that go out of their way to make sure we have everything we need...while sacrificing so much of their lives and the lives with their families and jobs.  The support we have received from family, friends, and complete strangers is overwhelming so I hope I have not taken that away from anyone...we appreciate everything everyone has done for our family.  We could NOT do this alone.

Please keep us in your prayers for peace, patience and as Hope is now telling everyone when they ask what they can get for her "a brand new heart".

2 Months on the List

Today marks 2 months that Hope has been waiting for her perfect new heart.  She has been in the hospital for 82 days and there are days that it feels much shorter and others that feel like it has been much longer.  We have moved into the 'penthouse suite' of M40.  It is a HUGE room with an adjoining bathroom.  It has a ton more open space than the other rooms we have been in and we are making it more and more like home every day.  I am hopeful that we won't get too comfortable in the room as we would like Hope to spend some time at home this summer...but we also know that waiting for the perfect heart can take some time.

We have met so many great families in our time at the hospital and I am always thrilled when they leave.  I hate to think of anyone else having to spend this much time at the hospital.  It is not easy and there are times when it is downright depressing.  Visitors are great and we love to have people stop in when they have appointments or are staying for a little while recovering (or for IV antibiotics).

We have also been so privileged to have so many great friends and family.  Hope has received so many great presents, cards, and prayers.  Thank you never seems enough for what everyone has done for our family.  Complete strangers (and A Special Wish Foundation) have shown us the true spirit of giving.  My heart is so full of gratitude and I wish there were better words to show our appreciation, but THANK YOU so much for your support.

Waiting

The waiting is a bittersweet experience.  It is long and provides a huge opportunity to think about life and all of the miracles and blessings we have experienced.  It is hard thinking about another family losing their child...it is unbearable actually.  It fills me with so much gratitude and love for the family...knowing that at the hardest time in their life they will think of others and donate their child's organs.  Without people willing to donate, Hope will eventually pass away.  She is stable right now, but there is always the probability that her heart will get worse and that more medical intervention will be needed.  There are still many options that allow us to wait for the perfect heart, but it is scary.

We are so blessed to have medical care so close to home.  I have met so many people while we have been waiting that travel so far for the excellent care at the Cleveland Clinic.  My friends and family are able to visit and so many do visit a lot.  We are so thankful for the great friends we have met and our families have provided so much for us.  I can't imagine how difficult it would be to travel across the country or world and be away from friends and family and wait for a life-saving operation.

I would love to thank everyone that has done so much for our family.  We are forever grateful for the food, presents, cards, and support we have received.  We are humbled by the outpouring of love for Hope and our whole family.  I wish I could express my thanks better because my heart is so full of gratitude and love for everyone.  You mean the world to our family!

Mother's Day

I wanted to share this poem from Stephanie Husted because nothing I can write today will be as eloquent as this poem:

This is for the Mothers...
(Each mother that I've known)
Whose greatest hope was someday
To have children of her own.
For the ones who proudly rocked their dolls
And kissed them each goodnight
This is for the Mothers
Who were told,"Something's not right."

This is for the mother
Who when faced with such a trial
Sits beside her child's bed
Just praying all the while.
For moms who learned of patience
In ways that no one should
For mothers who know firsthand
Life isn't always good.
When dreams of all the "oohs" and "ahhs"
As doting friends arrive
Become instead...a battle
To help their child thrive.

This is for the mothers
Who refuse to sit in silence
Advocating for their child
With constant love and guidance
Appointments fill their busy lives
It's time to go again
With feeding pumps, and specialists
A tank of oxygen.
As people stop...to take a look...
Just wondering...what's wrong?
I've seen that look, a hundred times
"You must be very strong".
The oohs and ahhs don't matter
Now life seems much more clear
I'm lucky I'm his mother....
I'm blessed to have him here.

This is for the mother
Whose shaking hands release
The child that she loves so much
(And then she prays for peace)
"We will take good care of him"
The nurse says carefully
This mother's thoughts are simple
"Lord bring him back to me.
His life no longer in her hands
She wonders what's in store
This is for the mother
Who has walked this road before.

This is for the mother
Whose worst fear comes to light
"We're still not certain what went wrong"
"We'll watch her through the night."
For mother's who sit powerless
Praying...please let her survive
For mother's who go on somehow
When their miracle doesn't arrive.
As some wake up on Mothers day
To kisses, cards and laughs
Others have just memories
and well worn photographs.

This is for the mothers
Who knows that it's a treasure
To have a child...love a child
There is no greater pleasure.
For runny eggs and blackened toast
Arranged upon a tray
With a bunch of wilted dandelions
"Mom does it taste okay?"
For every busy restaurant
And every crowded mall
The words...."I love you mama" are...
The greatest gift of all.

~Stephanie Husted

Goodbye for Now Grandpa

Today my grandpa passed away. He was a good man and had a great heart and a beautiful spirit.  I only have one grandparent left and I am sad. It is really hard knowing that my kids will not be able to grow up with my grandparents.  I love them all dearly and will miss my grandpa so much.

John Vernon Wiley, Sr.
Born in Toledo, OH on Nov. 30, 1919
Departed on May 8, 2014 and resided in Owensboro, KY.

Service: No Service

Cemetery: Toledo Memorial Gardens

John Vernon Wiley, Sr., 94, of Owensboro died Thursday, May 8, 2014, at Signature Healthcare at Hillcrest in Owensboro. He was born November 30, 1919 in Toledo, OH, the son of Ora May Yarrick and Steven Wiley. John married Marilyn Ann Post in Mobile, AL where he was stationed in the Navy during World War II. During the war, John was a pilot in the Navy where he was in the reorganized Torpedo Squadron Eight. He received his wings August 1, 1944. After the war, he stayed in the Naval Reserves. John returned to Ohio where he and Marilyn made their home in Adams Township, which is now part of Toledo. Upon moving to Adams Township, he drove a school bus, farmed, raised laying hens, sold eggs and worked as a propane serviceman. He retired from Cal-Gas in 1982. John was active in the community. He was elected to the Adams Township School Board where he served as president, was chairman of the Republican party of Adams Township and was a ward committeeman. John was a member of American Legion Post #553, and was on the Adams Township Volunteer Fire Department. The family was members of Epiphany Lutheran Church.  He and Marilyn had three children, John Junior of Owensboro; Anne (Jeffery Mitchell) of Middletown, OH and Ruth Wilson (Harold) of Owensboro. John and Marilyn bought a home on Lake Erie in Luna Pier, MI where he enjoyed his favorite pastimes of fishing and boating. Family and friends enjoyed the place at the lake and many of the grandchildren learned to fish and ski with Grandpa. Upon retirement, the couple bought a motor home and traveled the country, seeing lots of sights, meeting many new people and eventually leading them to Florida where they purchased a home. John and Marilyn then spend the summers in Luna Pier at the lake and the winters in Florida on Easy Street in Palmdale, FL. You could find him reading a good book, doing crossword puzzles or listening to the McNeil Lehrer report to keep him current with the politics of the nation and state. Family can remember his wise counsel especially reminding that "fresh air and exercise" are the ways to improve sickness and keep one healthy, which he practiced daily. John and Marilyn moved to Owensboro, KY after selling their lake home. Preceding him in death were his parents, and a sister, Janet Beidleman. In addition to his three children, John leaves six grandchildren, Elizabeth Eisenmann Thompson (Mike) of McGaheysville, VA, Phillip Eisenmann (Danielle) of Gilmanton, NH, Marilyn Amantea (John) of Brook Park, OH, Paula Wodzisz (Gerald) of Medina, OH, John Wiley, III of Cleveland, OH and Morgan Wiley of Owensboro; five step-grandchildren, Sheena Purcell (Pat) of Owensboro, and Kris Mitchell, Erin Waller (TJ), Adam Mitchell, and Sara Johnsen (Ryan) all of Ohio; eight great grandchildren, Michael and Annabelle Eisenmann, Dominic and Amanda Amantea, and Destiny, Jerry, Paul and Hope Wodzisz; eight step-great grandchildren, Candice Fenton, and Hannah and Kirstin Brown all of Owensboro and McKenna, Reagan and John Waller, and Lillianna Johnsen all of Ohio.

John will be buried in Toledo Memorial Gardens. A memorial service will be planned in Luna Pier, MI at a later date. James H. Davis Funeral Home & Crematory in Owensboro, KY is in charge of arrangements.

2 Months In Patient and 40 Days on the List

Hope has now been in patient for two months and on the list for 40 days.  I am surprised at how comfortable she is in the hospital.  I was expecting a really rough time when we were planning the Fontan for this summer.  I thought she would be scared, angry, and grumpy during the whole hospital stay.  At two months, she is doing so much better than I expected.  She is up and about, playing, making friends with lots of nurses, doctors, and various other people that stop by to visit.  She is still pretty shy around people she doesn't know or people that come in to talk to her.

Another surprise is my own attitude.  I was awful during prior hospital stays and hated every minute that we spent in the hospital.  Little things got on my nerves before and I would be grumpy most of the day.  This hospital stay is different for me too.  I know we are going to be here for a while, so I am making the best of the situation.  I am able to work in the room during the day and part of the night.  I take a few breaks from work to take Hope to the playroom...once in the morning and once in the evening.  I don't get mad about much at all and I appreciate everyone so much more than I did before.  The staff is awesome and tries to make life a lot easier and I appreciate all the little things they do for me.

I have learned so much in these last two months.  I have learned to lean on other people when I need help and a shoulder to cry on.  I have learned that people love to do things for other people...this is something I have done, but I didn't realize there were so many awesome people out there.  I am overwhelmed by the support we have received from family, friends, and strangers.  I don't think THANK YOU is enough for all the support, but know that our whole family THANKS YOU for everything!!!

Dr. Boyle (Hope's new doctor because she is in heart failure and waiting for a transplant) is in Italy this week for his wife's birthday...what a great guy!  We have been told many times that hearts seem to come available when Dr. Boyle is away.  I don't know how true this is, but I am hopeful that her new heart will arrive at the perfect time.  I am kind of hoping it will not become available until after Mother's Day.  I would like to think that the donor family will spend a great Mother's Day together.  I think about the donor family all the time and know that they will be making the most difficult decision of their lives.  I know it is a decision that cannot be easy to make and I hate knowing that another family will have to make this decision for Hope to live.  Please keep the donor family in your prayers as well.

One Month on the List

Hope has been on the transplant list for one month today.  Some days it feels longer and some days it seems like just yesterday she was at home.  We are so thankful for all the help and support we have received over the past couple of months.  Living at a hospital is not easy...especially when you have little ones still at home and a marriage to keep alive and well.  Jerry and I have been able to spend a few cherished nights out with the help and support of our family and A Special Wish Foundation.  It means the world to us to have so much help and support and I don't know what we would do without every single person that has called, texted, spent time with us, supplied awesome meals, helped with our kids, sent Hope wonderful presents and cards, and just kept us in your thoughts and prayers.  I don't know how to thank everyone because my heart is so full of gratitude for the thoughtfulness of others.

I wanted to share some other information with everyone as well.  The biggest questions I get is how long will we be in the hospital and when will Hope get her new heart.  These questions are impossible to answer.  There are so many factors involved in receiving a new heart and while Hope is at the top of the transplant list for her size...someone has to go through the unbelievably difficult time of losing their child and be willing to donate their organs.  It is something we think about so much...the grief this family will have to face in order for Hope to live.  It breaks our hearts all the time.  I started a letter to our donor family on the day Hope was listed and I have continued writing many other times.  I plan to give the letter to the hospital the day after Hope receives her heart and I will continue to write to this amazing family.  I don't know if they will ever read the letters or respond, but I really hope they someday want to know how much they have impacted our family with their ultimate gift of life.

As many of you that follow me on Facebook know Hope has been getting out of her room a lot.  We try and get her out and walking around as much as possible.  She is dressed every single day (thank you mom for supplying the endless sundresses as that is the only thing that works well with her PICC line).  She loves the playroom, fish tank, Ronald McDonald Family Room, Rooftop (we have to have a nurse with us that is certified in Pediatric Advanced Life Support with us when we go there), and the Lobby.  It takes some work to get her out of her room, but it is totally worth it.  She is getting the strength back in her legs and likes to be around other people (we do practically rub her down in sanitizer when we are out and when we get back).

If anyone would like to send a card, here is the address (she loves cards and we hang them all over her wall in her room):

Hope Wodzisz
Patient Mail M40-16
Cleveland Clinic Children's Hospital
9500 Euclid Avenue
Cleveland, OH 44195

Happy Easter

I have always loved Easter.  It has been about the Easter bunny, candy, food, and family.  We didn't grow up with strict religious views and faith is something I have relied upon through silent prayer and asking for forgiveness.  While we will not be attending church on Easter morning, we will pray and we will remember that Easter is the day Jesus rose after dying on the cross for our sins.  My kids will still get their Easter baskets, we will all eat way too much food, and we will spend the day with friends and family at the hospital.  This is the first holiday we have ever spent with Hope in the hospital.  4 and 1/2 years with a girl with 1/2 a heart and we have been so lucky.  We have friends that have spent most of their holidays in the hospital and I have always said a prayer for them to enjoy the holidays and remember their real meaning (sometimes not even remembering it myself).  I think about the families that will be celebrating without a special person in their life and pray they will find some joy in the day.  I think about some very close families that will be celebrating this holiday after losing their child...be it the first holiday without him/her or several years later. My heart breaks for those families most of all.  I will be praying for them and praying for the family that will make the ultimate gift of life to give Hope a chance to grow up.

Heart Buddies

The last few days have been a roller coaster of emotions for myself and several families that have spent a lot of time waiting for their gift of life.  I don't want to mention names because I don't know if the families would feel comfortable so I will use an initial for each of them.

W has been waiting for a heart for quite some time.  He waited at home for about a year and then was admitted to PICU to continue waiting.  He has been in since January.  A few days before we arrived, he went downhill pretty fast and had a Berlin Heart placed.  I think all these new devices are really cool and they do give kids more time to wait for their new hearts.  Yesterday I was talking to his parents and they were scared because he was not doing too well at all.  Hope and I have been praying for a heart for W for the whole time we have been at the Clinic.  I was so worried that I asked to be moved to Step Down because I know I would not be able to handle it if something were to happen to W.  This morning I went down to the Ronald McDonald family room and W's parents were there...looking happier than I have seen them in the whole time we have been there.  W got a heart last night!!!  It is amazing to me that he needed it so very bad and it was there.  I am so happy for him and his family and I pray like crazy that I can watch him grow up and run around and play with his brothers and sisters.  His parents are amazing and have been through so much.  Please keep all of them in your prayers as W makes a strong recovery and is out playing soon.

L has been waiting for a heart for a couple months as well.  He is a little older than most kids and didn't find out about his heart until he was 17.  He is a cute and fun young man and has been walking through the Clinic since he received his LVAD.  His mom is so sweet and tiny and the cutest lady you could ever meet.  I can't imagine how hard it would be to find out at 17 that you are in heart failure and I know his mom has been in shock since finding out.  After finding out this morning that W got his heart, I saw L's mom (we are now next to them in Step Down...we were next to W in PICU).  I had seen a post on Facebook, but I knew when I saw her face that they had received their miracle as well.  I am stunned at how fast things change and the whole atmosphere has been totally changed...overnight.

K is a cute little boy (Hope's boyfriend) that we have been through the Norwood and the Glenn with at the Clinic.  His parents are the best people you could ever meet.  Hope and K have been across the hall from each other during the Norwood and the Glenn and it was always my intention to have them get their Fontan done together as well.  You know what they say about best laid plans...Hope sure put a kink in my plans.  K had his Fontan last Wednesday and has done AMAZING!!!  He is in Step Down and Hope gets to watch him walk the halls and take lots of rides in the wagon.  Hope has been in the wagon too and hopefully we will be allowed to venture off the 4th floor sometime soon.

C is a little princess that has flown the coop (literally...she is now in Boston).  Her mom kept me company and spent lots of time playing with Hope in the PICU.  She decided to take C to Boston to get her heart repaired and I know they are all in good hands.  We love the Clinic and know they provide excellent care, but C is complex and Boston sees complex heart kids all the time.  I can't wait for C to come back and have a cool play date with Hope.

There are so many families that I have met and become close to during our stay.  I hope that as each of you pray for Hope that you will also say a pray for W, L, K, and C because they are all on the path to recovery and I know their families could always use the extra prayers.

Hope's Room

Just a glimpse into Hope's room in the ICU at the Cleveland Clinic.  She has received a lot of cards and notes from friends and family and we make sure we put them all up for her to see all day.  Hope also spends a lot of time doing her own artwork and has so much fun we have to put it up.

Thank you to everyone that has sent notes, well wishes, and prayers.  We appreciate them more than you can ever imagine.

If you would like to visit or send a card, here is the address:

Hope Wodzisz
M43-13
Cleveland Clinic Children's Hospital
9500 Euclid Ave
Cleveland, OH 44195

We may be moving to Step-Down again this week, but it is not a for sure thing yet.  She is slowly being weaned from the high flow oxygen and we have to wait until Dr. Boyle returns this coming week.  She will have a lot more wall space over there, so it will be fun to decorate.

Thank you again for the prayers...they work and are being felt!

One Month and 10 Days

Hope has now been at The Cleveland Clinic Children's Hospital for one month.  I reflect on this so much because prior to this admission, it had been years since she has spent any time in the hospital.  I think I took her health for granted because she had such an easy time and has done so well for so long.  I never would have thought it was possible for her to be in heart failure and needing a new heart at four years old.  We have always been told it was possible, but I always imagined it in the far future.

Hope is currently listed as a status 1A on the transplant list.  She has been on the list for 10 days and counting.  I have heard of people getting their new hearts in hours, days, weeks, months, and even over a year.  We really don't have any idea when the perfect heart will arrive, but we do know it will be bittersweet.  We have thought about the family that will be giving Hope a future...a family that will be living a nightmare that we are praying to avoid.  I cannot describe how thankful we are that a family, while going through a grief that is unimaginable, has selflessly donated their child's heart to live on in our daughter.  It is the kindest gift a person could ever give to someone else.

Our days are filled with games, stickers, painting, music, and lots of fun activities.  It is also filled with blood draws, stethoscopes, bandage changes, lead changes, blood pressure checks, medicine, and NG feeding.  It is filled with smiles, laughs, giggles, playing, and lots of love.  It is also filled with cries, de-sats, and rest.  The days pass...sometimes fast and sometimes slow.  They pass with prayers filled with blessings for the times we have spent as a family and the hope for many more times together as a family...at home with a new heart and a new journey.  It is scary and emotional and we rely on each other and our family and friends to help us through.

Please keep Hope in your thoughts and prayers and keep the family that will donate their child's heart in your prayers as well.  That family is not aware of what the future holds and I pray that they are spending their days enjoying their little one.

Hope's Medical Team

This post is going to be a lot harder because even though I see people every single day, I don't always remember their names.

Dr. Prieto - she has taken care of Hope since she was born.  She is very caring, but will definitely tell you how it is.

Dr. Preminger, Dr. Golden, and the rest of the Cardiologists at the Clinic have been there for my family and have been following her through our new journey.  We get a new one every week who is on call and we will eventually know all of them very well.

Dr. Stewart is an amazing surgeon and a wonderful person.  He has never operated on Hope, but he will be the one that gives her a new heart.  He has laughed and cried with me during this stay and I am forever grateful to him.

Dr. Boyle is now Hope's doctor.  He takes care of all the kids with heart failure and the ones that need a new heart.  He is the big reason Hope is on the list.

PICU Doctors - I don't know half of their names, but I truly thank them for keeping Hope comfortable and as healthy as possible.  They really listen to me and that makes all the difference in the world.

The Nurses - I wish I could list them all because we love so many of them.  Oksana is my favorite and I really think she loves our family as much as we love her.  Kristen, Adam, Allison, Kate, Travis, and so many others to list.  The nurses know Hope better than most of the doctors and are always there for our family if we need anything.

Big John - everyone knows he is the best blood draw around.

Christine (Music Therapy) - she does amazing things for Hope.  Whenever she is at the door, Hope's face lights up.

Meredith (Art Therapy) - she also makes Hope's face light up.  We have so much artwork on the walls and the room looks awesome.

Sarah (Child Life) - she always gets the call when they need to distract Hope.  She plays and helps so much.

The Volunteers are amazing.  Every day we get to take advantage of these wonderful caring people.  They not only come and play with Hope, but they relieve me for a little bit...usually so I can take a much needed shower.

There are so many other people that I need to thank and yet I can't remember their names.  We get so much support from everyone and feel like everyone is looking out for our whole family.

So Many Thank Yous

I have been posting thank yous on Facebook, but I wanted to post them here too because our family appreciates everything everyone has done for us so much.  We have received so much support from family, friends, and complete strangers that I am overwhelmed with love for so many people.

Mom...you are always there for us...anytime.  I can't thank you enough for everything you do for our family every single day.  You wake up the boys, get them dressed, get them to the bus on time, and still spend time with me and Hope.  You are an amazing mother and there is no way I can ever thank you enough.

Marilyn and Family...thank you is not enough for all the support you have given us through this journey.  The food, gifts, visits, and especially the night out Jerry and I spent together (alone).

PaPa and MaMa...your kindness and support are appreciated so much.  Hope loves her presents and loves your visits.  Sharing your FuelPerks makes a huge difference...gas is crazy expensive and we are always traveling an hour away.

Aunt Betty and Uncle Tony...there is not enough thanks for the Calico Critters that keep Hope entertained so much of the day.  She loves them and loves you so much.  I hope you will come and visit soon so she can thank you in person.

Uncle Bernie and Aunt Olga...your visit was unexpected and filled our hearts with so much love.  Your generous gifts provided smiles for Hope and for Jerry and I.  Living at the hospital is difficult, but you made it much brighter.

Danielle and Greg...thank you so much for visiting and bringing candy to cheer up Hope.  We love visitors and hope you come by again soon.

Geraleia and Dylan...thank you for the presents and the visit.  I hope you will come back again soon.

Aunt Kim and Aunt Julie...thank you for making the drive to visit our sweet little girl.  I know it is quite the drive and we are so glad you made it to visit with us.

Bob and Shoshana...thank you for stopping by and visiting Hope.  I wish I had been there to see you two.  I hope you can make it back for another visit.

John and Mia...thank you for the visits and keeping Hope in your thoughts and prayers.

Chippy Molnar...you have done so much for our family and just keep giving more of yourself all the time.  You are one heck of a woman!

Jinx...thank you for everything...taking Destiny to school, bringing us home-cooked meals, and presents for Hope.  You have done so much for our family and it is so appreciated!

Erin Driscoll...yummy cupcakes.  Hope and I managed to get through all of them...although we did share 2 with the nurses we had.

Erica Kuhn...I know you didn't have time to stay, but thank you so much for the refreshment and food.  Hope and Kylan are traveling different paths now, but they are still heart friends and always will be (maybe even heart boyfriend and girlfriend some day).

Monica Kelley Nelson...thank you so much for everything you have done for our family (and the nurses in PICU loved the lasagna too).  It was great finally meeting you IRL (in real life).  Carter is a super cutie!

Anne Hazel-Curwen...I got the banana bread almost all to myself and I thank you for the 5 pounds I probably gained from it...you are an excellent cook too.

Becki Libby and Kristin Becker...you ladies amaze me so much.  You have been through the loss of your boys from congenital heart defects and still find it in your hearts to support those of us going through the worst with CHDs.  You make me a better person and I love and respect you both.  Your boys are so very proud of you!

Margaret Andorf...you are truly the Mended Little Hearts leader and even with as busy as you are, you managed to come and visit.  Thank you so much for the presents and for spending time with us...it means so much to have company.

Kristin Faniola...thank you for bringing the Blanket for Love and presents as well as Cam...he is a super little guy.

Kathy Fatica...we love the cross so much.  Hope keeps it in bed with her every night.

JoEllen Podoll...I was looking forward to helping you celebrate Maryn's 1st Birthday.  I am glad she got to come for a visit and we appreciate all the presents from her party.

Devine Family...we love visitors and were so happy to see all of you.  The Clinic is a crazy place and so far from home...thank you so much for coming and keeping Hope in your prayers.

Jeri and Dylan...thank you so much for the gifts and the card for Hope.  She loves them!

Buckeye Local School...WOW...that is all I can say.  Everyone has been so supportive of our family.  Hope has tons of cards on her wall from her classmates and classmates of her brothers.  The presents that the teachers and staff have sent are overwhelming and so appreciated.  She is keeping herself busy and we are hoping to get some preschool tutoring help in soon.

A Special Wish Cleveland Chapter...this is an amazing organization and run by some of the most wonderful people I have ever met.  They have provided food and some awesome presents for Hope to play with during her stay.

Blankets for Love...thank you for the great blanket that keeps Hope warm day and night...it also adds a girly touch to an otherwise sterile environment.  She loves her doll too!

THANK YOU to everyone that has prayed for us and continues to keep us in your thoughts.  This is a new journey for our family and we appreciate all of the kindness we have received from everyone.  Thank you never seems like enough to tell people when we have been blessed with so much from so many people.

Tomorrow will be my thank you post to all the wonderful doctors, nurses, specialists, therapists, and so many others at the Cleveland Clinic Children's Hospital that have been with us and continue to support us through this journey.

HOPE IS LISTED

Hope with her favorite nurse, Oksanna

Hope was listed today as a 1a for a new heart.  I am thankful the Cleveland Clinic Children's Hospital is willing to provide Hope with the possibility of a longer life with a brand new heart.  I was really concerned that it might not happen, but now I know it will.  I don't know if it will be today, tomorrow, or 6 months from now, but the perfect heart is waiting for Hope.

As excited we are that Hope will have an opportunity to thrive with a brand new heart, we also know that in order for that to happen, another family will be mourning the death of their child.  It is bittersweet and very difficult to comprehend and think about all that goes into receiving a new heart.

Please keep our family in your thoughts and prayers as we wait for a new heart.  Please keep the family that is generously donating the gift of life to our daughter.  We will cherish this heart and protect it with everything we have.

2 Down 1 To Go

We have received approval from The Cleveland Clinic Children's Hospital and the Adult Transplant Team.  We are still waiting for approval from the Ohio Solid Organ Transplantation Consortium.

The Ohio Solid Organ Transplantation Consortium is dedicated to improving the lives of individuals with solid organ failure who could benefit from an organ transplant.

The following goals have been identified to assist the OSOTC in achieving its mission.

1. Optimize utilization of the scarce resources currently available for transplant by carefully selecting patients listed for transplant.
2. Improve and ensure the quality of care provided by all of the transplant programs and services from member institutions.
3. Represent the needs of the patients and issues of importance to the transplant community to the Ohio policy makers.
4. Advance the medical technology of organ transplantation.
5. Expand patient access, address disparities and promote early referrals to end stage organ disease management programs in the state of Ohio.

Please keep Hope in your prayers...specifically for approval to be put on the transplant list.  This is our last step to being listed and the only thing they have to go on is medical summaries.  We should know by Friday and I will be sure to post as soon as we have an answer!

Still Hanging at The Clinic

I wish this post would be a turn around post to let everyone know that Hope is home and no longer in heart failure.  I have been keeping up with Facebook, but I have been slacking on keeping the blog updated.  It is hard sometimes to think about what to write and to keep things in good spirits.  Hope has a bunch of accessories now and the plan is to evaluate her to see if she is a candidate for a new heart.  Let's start with accessories:

She has her PICC line...which is good and bad.  She gets her Milrinone and Heparin through it and they can sometimes draw labs.  It is mid line because there is a chance of clotting and they don't want a clot in her heart, so they didn't run it all the way.  This makes it harder to draw labs, so she is usually 'stuck' every day.  She is taking that pretty well...for which I am thankful.

She is on oxygen...usually 100% at 2-5 liters depending on her oxygen saturation level.  The lower it goes the higher the liters.

She now has a feeding tube.  This happened yesterday because she is not eating enough to sustain her and they want her as strong as possible if she is a candidate for a transplant.  This is something I have fought for over 4 years, but I finally conceded and let them put one in.  She seems OK with it and hasn't figured out how to pull it out (thank God).

She also has the normal stuff...pulse ox monitor and EKG leads.

Now...onto the transplant information.  This is a lot harder for me to write about and it scares the HELL out of me.  Hearts are a very precious gift from a family that is going through a parents worse nightmare.  Not many are available because not too many children die and have parents that are willing to donate something so precious.  Hospitals have to make sure anyone on the list is a good candidate...meaning if they put in a new heart it will improve the child's life and keep them alive for as long as possible (10-20 years is typical).  With that said, there are anatomical issues that Hope was born with that may not make her a very good candidate.  She has very small pulmonary arteries (about 2mm and normal for her age is about 8mm).  The pulmonary artery carries deoxygenated blood from the right ventricle (the only one Hope has) to the lungs.  Because Hope's are smaller, the wedge pressure is high (14mmHg) and there is fear that a new heart would increase the load too much and create pulmonary hypertension (which is bad).  The other issue we have faced since Hope was born is her kidney function.  While it has remained stable for years, we do know that her kidneys are not the greatest.  She has multicystic (which means her good kidney has cysts) kidney disease.  She has also renal agenesis (meaning her other kidney is very small).

Hope has also received blood products during her open heart surgeries, which means her antigens (any substance - usually a foreign substance...blood from someone else which provoke an adaptive immune response) may be high.  If that is the case, it would also be harder to get her listed and much harder to get a heart.  She will have her blood drawn in the morning to get the number (between 1 and 100) to see her potential rejection factor.

We have started the process, but everyone is very up-front and honest about the issues and the likelihood that she will be listed at the Cleveland Clinic Children's Hospital.  We should find out more tomorrow and I would appreciate everyone to pray between 3-4 tomorrow afternoon for approval to be on the transplant list.  There is a meeting from 3-4 tomorrow where the cardiac and transplant team gets together.  Hope is on the schedule and I am guessing she will be talked about a lot.  She can be approved or denied at this point.

At any point in the approval process they can deny her to be listed.  If that were to happen we would seek opinions until we find a transplant facility that will list her for a new heart.  We will NOT give up on Hope.  We would prefer to stay in Cleveland, but if they do not believe in Hope...we will find somewhere that will.

If she is approved by that group, she will be presented on Tuesday to the adult Cleveland Clinic transplant team.  She can be approved or denied at this point.

The third round of approvals goes to LifeBanc (a consortium of Ohio hospitals) to determine if she is a good candidate.  They will not know her...only her medical information.  It is based solely on scientific information based on her medical records...which sucks because it doesn't give them an accurate picture of what a fighter she is.  I think they have 48 hours to make a determination (which would be Friday).  She can be approved or denied at this point.

The 4th and final round of approvals is at the national level (UNOS).  They will also only base their decision on her medical records.  This is the final level where she is either listed or denied.

Please, please, please keep Hope in your prayers on Monday that they will approve her for a new heart.  This is one of the biggest and toughest decisions that a hospital can make and we will be praying that they accept her.

Plans Change all the Time

PICC line...no PICC line...YES...we now have a PICC line.  I hate it and Hope hates it, but it is there and we are now used to it.

CT scan...no CT scan...NO CT SCAN!  This one is pretty darn certain.  The risks (intubation, additional hydration, and possibly not getting good enough pictures) made Dr. Prieto decide against it.  This is what they are looking for...they want to make sure her ascending aorta has not kinked or narrowed where it meets her native aorta.  Her ascending aorta has always been small (about 2mm when she had the Glenn) and they are wondering if when her aorta grew (which happens when kids grow) if maybe the ascending aorta might have kinked or narrowed.

Cath...no Cath...still no decision on the Cath.  This is kind of a wait and see.  I think it will happen...probably this week.  I actually think it may help figure out what is happening, but I know it will help rule out what is NOT happening.

Tomorrow is a day free of everything.  We are pretty much going to hang out and just wait until Dr. Prieto has time in her schedule to do the cath.

Please keep Weston in your prayers as well.  He will be re-listed for his heart tomorrow!

More Hospital Days

The days are getting a little easier for Hope and she is not having as much fear as when she was first admitted.  She has been chatting with the nurses and doctors and being her cute little self.  This picture is from her hair styling this morning.  They through on this cap and scrub and when it is done...hair is clean and shiny.  Hope wants to take a lot of these home because she hates getting water in her eyes when she gets her haired washed.

Sadly, we were not able to celebrate my niece Amanda's birthday with her at home.  So the next best thing...Hope decorated her room for Amanda!  Marilyn (my sister), John, and Amanda brought up brownies to celebrate (we shared with the nurses).  It was great having everyone there and we hope Amanda had a great birthday!

We also had a surprise visit from one of the teachers, Mrs. Shrader at Buckeye Schools (where the kids all go).  She helps get Hope out of the car every day and she is the reading specialist my son Jerry sees during the week.  She is an amazing woman and brought stuffed animals for Hope and for a few other cuties that are in the PICU with her.

When I got home tonight, we had a huge surprise...a full dinner for our family from Destiny's best friend's mom (Jinx).  She is an amazing cook and I can't wait for dinner tomorrow to try everything.  She made us pork, sauerkraut, potatoes, dumplings, and gravy.  She also bought Hope a really cute present.

Tomorrow is the big day where they check her heart again.  I am scared to death and actually came home tonight to get the boys off to school in the morning.  Jerry is staying with her and will hear the news at rounds in the morning.  I am praying like crazy that the medicine is working and her heart is doing better.  I am also realistic in knowing that what she looks like on the outside isn't always indicative of what is going on with her heart.

Please pray for Hope and for our whole family.  Also...there are a lot of great kids in the hospital that need your prayers as well.

Yesterday and Today

A PICC line was discussed in rounds yesterday and Dr. Prieto wanted to see Hope's echo today before making that decision.  Sadly, Hope's echo did not look much different today than on Wednesday so a PICC line was ordered. 

Hope's numbers were not great yesterday, but today they are looking much better.  She spent the day telling me how hungry she was and asking for a cheese sandwich, chips and cheese, chocolate bar, macaroni and cheese, a brownie, and anything to drink.  I felt so bad telling her no...she had to wait until after they placed the PICC line.

Sadly, her IV blew in her hand so she needed a new one.  They put this one in her foot and she really likes that much better.  The one in her left hand made it hard for her to do stuff and she didn't like it at all.  

Fast forward to 5pm.  It has been crazy in the PICU today.  Two new little babies...one needed an urgent Septostomy in the cath lab and the other one was 'just' an admit.  Dr. Stewart was also performing a Glenn on a little one, so it was totally crazy.  Hope will not get a PICC line today.  I am actually perfectly fine with that...I feel like I want to give the medicine the weekend and pray with everyone that her heart gets stronger.

I also want to make sure I thank so many of the fabulous people at the Clinic.  Child Life and Occupational Therapy have been awesome.  We didn't have to use these services when Hope was in the hospital before because she was so young.  They are always available and come to the room to play with her anytime.  She has had Art Therapy and Music Therapy as well and loved them both.

I want to thank the great nurses that Hope has had during her stay.  Kate has been her night nurse and is great.  She doesn't bother us too much and we appreciate that more than I can say.  Liz was her nurse yesterday and is a great lady.  She played with Hope when we ran out with the boys to get a bite to eat.  She is also a great listener and I can tell that she loves working with kids.  Finally...Oksana.  So far she is my favorite nurse and is just so perky.  We had her today and will have her tomorrow too.  All of Hope's nurses have also been keeping an eye on Weston.  He is getting ready to get back on the transplant list.  Be sure to keep him in your thoughts and prayers...he is an amazing little guy and his parents are so nice.

I HUGE THANK YOU to Margaret Andorf and Joellen Podoll.  Both of these ladies spend a lot of time with their girls at the Clinic and still came to visit Hope and I.  Margaret brought Hope some awesome Dora stuff and she loves it all.  

Last, but definitely not least...THANK YOU to my family.  They are the best and are always there for us.  Most everyone has visited and they have made sure Hope is happy and they take stress away from me.  They also make sure we eat (Slyman's was excellent) and have someone that will be there for any help we need.

Please keep Hope and our family in your thoughts and prayers.  THEY WORK!!!  We have witnessed so many miracles in Hope's life and so many of her heart friends.