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.

Emergency Admission

I haven't posted on here in a long time...which is good.  It means Hope has been doing great and there has been no need to worry.  I have become pretty good about not worrying about her heart, kidneys, or her health in such a long time.  Today I got a swift kick in the butt about how serious her heart condition is and how quickly our perfect life can change.  Hope has been fighting a cold for a while now.  I took her in for a sinus infection and after 10 days of antibiotics, she took the last dose on Monday.  Tuesday morning she woke up pretty swollen in the face.  I didn't think too much about it...kind of blamed it on a possible peanut allergy because she has been eating a lot of peanut butter lately (and her weight is showing what a great job she is doing eating).  This morning she woke up and was swollen again.  I decided to call and get an appointment down at the Clinic to see if something else was happening.

Sadly, something else is happening.  Her heart function has decreased, her tricuspid valve is leaking, heart heart and lungs are enlarged, and her blood pressure is high.  All in all...she is in heart failure and I am scared to death.  I try to stay strong for her and my family, but today I totally broke down.  I fell apart in front of everyone and I felt a true loss of control.  I don't have any control over this situation or Hope's heart and that is something that has been so hard to admit and think about.

I am not sure how long she will be in the hospital, but they have her on Milrinone and they gave her a hefty dose of Lasix to get rid of the extra fluid.  She is totally miserable and keeps asking when we can go home.  I am heartbroken seeing her like this...totally unexpected and I was not prepared at all.  My princess is finally sleeping and I needed to purge my thoughts and feelings before I go totally crazy with worry.  This is her first emergency admission and the first time since March 8, 2010 that she will probably be here more than overnight.  March 8th is when she was admitted for her Glenn and she was home on the 14th.  6 days for open heart surgery and I am praying that she gets out of here before 6 days with this admission.

I will know more about the thoughts from all the doctors in the morning.  I am thinking that her being sick kicked her already sick heart into failure and that when she gets this ick out of her that her heart will be better too.  Dr. Prieto was not able to see her today...she had an emergency cath, so we saw Dr. Golden.  He said something similar and I hope we are correct.  Dr. Prieto stopped by this evening and she is kind of thinking it may be due to high blood pressure (hypertension) with a possible kidney issue as an underlying cause.  Medicine could help with this as well, so I will wait and see what happens in rounds in the morning.

I am hoping to keep this blog updated through her admission because it is a good release for me and I need that when I am here.

Please keep Hope in your thoughts and prayers.