Saturday, April 26, 2014

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

Sunday, April 20, 2014

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 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.

Tuesday, April 15, 2014

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.

Sunday, April 13, 2014

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
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!

Saturday, April 5, 2014

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 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.