Leo’s Story

Today, I want to share with you Leo’s story, Hana’s heart donor, as written by his mother, Kelly, about six months ago. Before I do that, I want to give a quick update on Hana. After Hana’s grade 2 rejection after her last biopsy, Hana has started on a steroid and all the associated medications required when on long term steroids. She also changed one of her immune suppression medications to everolimus. We really need a follow up biopsy to check her rejection status, which is important after having rejection AND changing immune suppression medication. Unfortunately, Hana’s biopsy keeps getting rescheduled because she has been getting colds, preventing her from being able to undergo general anesthesia. We are getting down to the wire now on how long the transplant team is comfortable waiting for this biopsy to happen, so we are isolating ourselves to keep the germs away. She is going to be evaluated by the transplant team and someone from the cardiac anesthesia team on Tuesday to see if she can safely undergo anesthesia and have her biopsy done on Wednesday! So, hopefully there will be an update about that later this week!

IMG_20190328_073022_088.jpg
Hana’s Brave face, when she is scared to get her chest x-ray, to check her lungs after getting another  cold.

And now, Leo. The little boy who saved Hana’s life. We get to read his story, get to know him, his parents and their incredible decision to save Hana’s life. This is on the eve of the start of April, Donate Life Month. So, if you aren’t registered to be an organ donor, maybe this can be your inspiration to register, in honor of Leo. (And then, tell us about it by leaving a Comment on this blog!)

“Leo’s story began on October 28, 2014 in Fort Collins, Colorado when he entered this world and changed our lives forever. When he was born, he was absolutely perfect in every way and from his first breath, Dave ( his father) and I knew he was something special. From the very beginning, he was hitting all of his milestones and growing exactly as he should. He was even ahead of some kids his age when it came to walking ( he started just shy of turning 11 months) and from then he was running everywhere he would go and one of his favorite games was chasing our cat, Buddy. He also loved “sumo wrestling” with his dad, playing with trucks, playing in water and chasing our dogs with the broom. He was a handful but he was also so incredibly loving. He could always tell when Dave or I were having a bad day and he would stop to give us a hug or pat his dad on the back like “ it’s going to be ok Dad”. He was so intuitive and looking back, he seemed so much wiser than kids his age and that he knew more then we could ever recognize. It was almost like he knew his time here on Earth was going to be short so he made the most of every moment he spent here.

Leo had a condition called Dravet Syndrome, that he was diagnosed with post mortem after we did genetic testing. It started out as a seizure that occurred right after his 6 month vaccinations, that most likely was triggered by a fever NOT the vaccinations (Dravet is a disease that develops in utero during development when there is a deletion in one of the sodium channels). The doctors at that time believed that it was a fever that triggered the seizure and that he was going to be totally fine. Another 3 or 4 months passed, seizure free and he had another one at his babysitters. This one was not triggered by anything, totally out of the blue. Following this seizure, Leo had an MRI and EEG done to check for any kind of underlying disease and both came back completely normal. We consulted with the pediatric neurologists at Children’s Hospital of Colorado and they diagnosed him with “ idiopathic epilepsy” and put him on medication twice a day to try and control the seizure, which it did minus one febrile seizure, until his final one.

In the 9 months prior to his final seizure, life was normal for our little family. Leo continued being a totally normal toddler and hit his milestones as he was supposed to. We were also in the process of planning our wedding, which was to occur on May 21, 2016. We were so excited to start our lives as an official family and to have Leo as our ring bearer and walk us down the aisle. All of this changed 2 days prior to our wedding on May 19, 2016 when Leo had what would be his final seizures.

We were at my parent’s discussing plans for the wedding when all of a sudden, Leo’s face just went blank. He starting have what they call an absence seizure and we could not get him to snap out of it. We administered his emergency medication that we had on hand and called 911. The ambulance came and picked him up and rushed him to a local hospital in Loveland. While there, he proceeded to have 2 more grand mal seizures and was flown via Flight for Life to Children’s Hospital in Denver. The second seizure was still going when they got to Children’s and it took another few hours to get that one to stop. After that stopped, we thought we were in the clear until his last seizure started. That seizure lasted 12 hours and is ultimately what ended up taking his life due to the brain damage sustained. The doctor’s put him in a medically induced coma to get the seizure to stop which worked but we would never see our little guy wake up again.

The staff at Children’s Hospital Denver were amazing. They are very attentive to the families and the needs of the families. They were there for my husband and I every step of the way, they explained everything to us in detail and never sugar coated over anything. When they were concerned that Leo wasn’t going to make it, the neurologist came right out and told me that he was ‘very concerned for Leo’ . I won’t ever forget that conversation but the way he delivered those words to me was still very comforting. I think they do wonderful work at that hospital and once I think that I have the strength to return, I want to help donate to the children and families that stay there.

About a week after Leo was admitted to Children’s, we had a care conference with all of Doctors that were involved in the care of Leo. That day was the worst day of my life. Sitting in that room, and looking at everyone’s face, I knew that they were going to tell me that we were going to lose our baby. The heartbreak and pain from that day will never leave me and it’s still so hard for me to go back and remember those feelings so I’ll just leave it there.

After the care conference, we had a representative from Donor Alliance come and visit us in Leo’s room. The first thing she told us was, ‘Your son has the potential to save 8 lives’. Dave and I both broke down when she said that and it wasn’t even a question that we had to discuss. It was an immediate yes. Although Leo was young and couldn’t quite talk yet, we knew that this was something he was meant to do. Why would we say no to the potential of someone else’s life being saved when we knew that our outcome wasn’t going to change? After we said yes, they began all of the testing that needs to be done to determine if a patient is a candidate and good match for organ donation. They determined that Leo’s heart and kidneys qualified for donation and began the process of finding a match. I’ll never forget when the tech came in to do the echo on Leo to check the quality of Leo’s heart and she stopped and looked at my husband and I and said ‘His heart is PERFECT’. All I could say in response was ‘I know’.

Leo was officially pronounced on May 27, 2016. I don’t remember when they told us that they had found a match for him because those days are somewhat of a blur to me. I just know that he was taken to surgery on May 28. All they told us at the time was that they had a recipient for his heart that was located on the West Coast and his kidneys would be going to recipient in the Midwest. We were told that if we wanted to contact the recipients we could write a letter to Donor Alliance and they would forward the letter to the recipient family. At that point, it would be up to the recipients to respond. At that point, I wasn’t sure when we would have the strength to write such a letter and so for the time being, I just prayed that they surgeries would go ok and that Leo’s gift of life would live on.

Dave and I obviously postponed our wedding from May 21 to a later date. We proceeded to get married on June 26, 2016 at a ceremony in the mountains of Colorado in the same place that Dave had proposed to me. It was very important to me to share my last name with Leo so I felt that I couldn’t put off the wedding any longer than that. When we had Leo, before we knew we were going to lose him, Dave and I had decided that he was going to be our only child. He was perfect in every way and we wanted nothing more than to focus all of our energy on him. When we lost him, we made the decision that we wanted to have another child. We were meant to be parents and the love that Leo showed us was something that we were not willing to give up on. On August 16, 2017, Leo’s little sister Aubrey was born. She is such a gift and is so much like her brother, it is amazing. She does not have Dravet and is a totally healthy, perfect little girl. We are going to make sure when she grows up she knows all about her brother and what a special kid he truly was.

Last year, just prior to what would have been Leo’s 3rd birthday, I wrote a letter to the recipients of his organs. I wanted them to know that I think of them every single day and that I wanted to know how they were doing. I wanted to know more about them so that I could share their story with Aubrey when she gets older so that she can truly understand what a little superhero Leo was. I never imagined I would get the response that I would get!

6 months passed after mailing the letter and every day, I would check the mail hoping for a response. Then, on Good Friday, there was a letter in the mail from Donor Alliance! I knew that it was THE letter that I had been waiting for. I immediately called Dave and told him that he needed to come home because we got a letter. He started crying before he even got off of the phone. I have never been more nervous, scared and excited at the same time opening a piece of mail. Inside the envelope was a 3 page letter from Kathleen and Paul. I couldn’t read a single word without crying. They told me all about Hana and the struggles she had been through with her heart condition and how far she had come since the transplant. They were so grateful for our choice to donate Leo’s heart and I could feel the love and gratitude coming through. They gave us the information for her online blog in that letter and we feel so blessed and lucky that she was the little girl that got Leo’s heart. To be able to see her journey documented from when she was diagnosed with her condition until now, is such a gift in itself and there are not words to describe what that means to Dave and I. After receiving the letter, we mailed to release of information form back to Donor Alliance which would give us the freedom to speak directly with Hana’s family and remove Donor Alliance from the relationship. In the meantime, Kathleen was able to find me on social media and we connected that way, just prior to what would have been the anniversary of Leo’s passing and Hana’s ‘Heartversary’. We continue to be in contact via Facebook and it is so special to be able to see all of the updates on Hana and their family and she is able to see our family and we can check in and see how the other is doing. It’s such a special unique relationship that I am forever grateful to have.

Every year since Leo’s death, we participate in something called the Donor Dash, which is put on by Donor Alliance. We do it to honor Leo and his recipients. This year was extra special for us because we had a face to put to not only our son but to the little girl who received his heart. Kathleen had shared that they do the Summer Scamper each year for Lucile Packard and this was something that our family wanted to be able to participate in, even if it was here in Colorado. My aunt even participated in South Dakota! My husband broke his foot in June so he was in a walking boot and scooter during the scamper, so we rolled/walked during it . We were in Winter Park, Colorado at that time so we did the scamper through the forest.

Since the moment we found out that Leo’s heart was still beating, it has been a hope and a dream to be able to meet Hana. There are no words to describe what it would feel like to hear his heart again and to see Hana thriving and living life to the fullest. We get to see that every day through pictures from Kathleen but to meet them in person would be a whole different level of amazing.”

img_6780img_7145-1img_7144-1img_7143-1

img_7147img_7142-1img_7141-1

To celebrate Leo and his gift of life to Hana, our family is traveling to Colorado this summer to join Leo’s family, on the team “Leo’s Pride”, for the Donor Dash that Kelly mentions.

37050003_10214957675208163_9107413095298367488_n

Tomorrow is the beginning of Donate Life Month! Please register to be an organ donor, if you haven’t already, and encourage everyone you know to register as well!

IMG_8173.JPG

The Donor Family Letter

Today, when my phone rang and when I saw the phone number come up, a little gulp of fear surged through me. It was Hana’s Nurse Practitioner and I was sure she was calling with biopsy results except that it seemed way to early, at 10am, to already have results. Nancy sounded cheerful and immediately said she had more good news. Hana’s biopsy result was a 1a, which is essentially no rejection. I felt incredibly relieved and said “whew!” Out loud. Her next biopsy is not until early May. We will begin to taper her steroids. We also discussed flu precautions, which has me slightly terrified this year. They had no additional precautions than the ones I’ve already implemented. Anyhow, we have reason to celebrate such good biopsy results!

On to the big news that Nancy gave me yesterday. After discussing Hana’s biopsy yesterday Nancy’s said she had more good news and then she said, “You have a letter from the donor family.” And then she handed me a plain white envelope, very thin, which appeared to have one sheet of a typed letter inside. I immediately started crying. I took the letter feeling like it was the most precious paper I had ever held in my hands.

I felt so many things at once that I can’t even really identify them all. They were just very very big emotions. Not since we received the call that there was a heart for Hana have I felt like this. I felt intense gratitude, relief, excitement. I felt the intensity of loss, grief, suffering. I even felt love and hope and desire. Of course, I did not open the letter until Paul was home. I cried on and off throughout the rest of the day. I waited. This is one reason why I did not mention this yesterday – I still had not opened the letter.

The letter was short and heartfelt. The donor was a boy, a little younger than Hana, who died unexpectedly. He had a contagious smile and was full of life – running, jumping, chasing. He was an only child. The parents said they think every day about the recipients who received his gifts and would love to hear how they are doing. We have decided that we are not going to post any identifying details that were shared by the donor family. As much as we love and appreciate all of the readers of this blog we want to respect the privacy and anonymity of the donor family.

It has been very emotional and we are still processing it all. I am incredibly grateful that the donor family reached out first. As much as I have wanted them to know our gratitude for their choice, it just never felt like it was the right time. Not just yet. Now, it feels like the right time! In a few days, after a bit more processing, Paul and I will write a reply. I hope we can somehow find that words that might begin to express how we feel. I hope we can perhaps offer some solace knowing that their son’s heart beats within Hana and explain how much she loves life. I hope we can continue to be the best stewards of this most incredible and amazing gift for Hana.

Thank you donor family. You are in our hearts every night.

With Love,

Kathleen

Finally, Another Biopsy

Today, Wednesday, Hana finally had her follow up biopsy to the 1b result she got back in November. They wanted her to have her follow-up biopsy a month later in December but Hana was sick and so it was canceled and couldn’t be rescheduled until the end of January. We got to go to the brand new hospital, which is right next door to the old hospital. It is beautiful and new and fun for the kids. Biopsy days are always exhausting for me. Its the preparing, getting up early, packing, figuring out care for Corrina and then there is the mental and emotional drain, which is probably the most exhausting. This time, my mom was here for the biopsy. She and Corrina came with us to the hospital, which makes things easier for us.

When Hana’s biopsy was over and she was in recovery but still asleep from her anesthesia, they called me back to the Consultation Room to talk to the surgeon who did the procedure. They almost never do this for routine biopsies so I started to get really worried that things had not gone well. I sat in the Consultation Room for a long time trying to calm my fears. I had Corrina with me while my mom went back to the recovery room where Hana was waking up. After 20 or so minutes someone finally came in to tell me they had talked to the surgeon and she had to go and would talk to me later. I was relieved because I was almost positive that this meant everything was fine. But for twenty minutes I was pretty stressed.

Hana’s Nurse Practitioner came out to talk to me and was looking for a private room, which made me nervous again because they don’t do that unless they have some kind of news. We found a empty sitting area and went over Hana’s results so far. Her heart pressures are improved since her last Cath Lab procedure and are in normal range of a transplanted heart. Her echocardiogram also looked fine. So that’s reassuring. That is all good news. Her biopsy results should be in tomorrow (Thursday) so we will know if they are seeing any rejection. Then, Nancy told me she had more good news. I couldn’t imagine what this could possibly be. Unfortunately, I will have to keep you all in suspense for now. More on that in the next day or so.

In the meantime, I want to introduce you to two special boys that are the sons’ of a childhood friend of mine.27605374_10155962716568830_1905743854_o

Michael and Jon Dougherty are participating in a fundraising event through the American Heart Association. They are doing a jump rope event where they learn to jump rope, learn about their heart and raise money to help kids with special hearts. Both boys have chosen to jump in honor of Hana. If you feel moved to do so, you can choose to support their fundraisers by following these links:

Michael: http://www2.heart.org/site/TR?px=6657997&pg=personal&fr_id=3191&et=9-2w0hbcXW7w9L1KXVB1_g

Jon: http://www2.heart.org/site/TR?px=9303519&pg=personal&fr_id=3191&et=dhLUceL_IFTUNNl2ChGSDw

Stay tuned!

Better Today

Hana’s fever is down to normal range. They still have her on the cooling blanket. She is still getting two broad spectrum antibiotics, although they switched out the zosyn for something easier on the kidneys. The attending doctors don’t feel like the fever was caused by infection. Attending doctors seem so much more calm about these things than fellows, or at least the newer fellows.

Hana’s CVP is down to about 10, which is where they want it. She is starting to have good urine output. They are still pacing her heart. Her blood pressure has been good. They took out her femoral line and the Foley catheter. Her sedation seems to be in a good place. They started her on Prilosec since she is not getting anything in her stomach.

They will do another echocardiogram today. Her X-ray this morning looked good – a lot less fluid. It’s actually amazing to see her X-ray now, her new heart is so much smaller and doesn’t take up almost the entire left side!

They will most likely not extubate today. Unless they can wean the vent more and if her echocardiogram looks amazing, than maybe. But it’s a holiday and Hana’s had three failed extubations so maybe it’s better to wait until tomorrow when all the normal staff is back and close by.

Overall, they think she is doing really well!


193 days in the hospital, 1 full day with her new heart!

4:30 OR Time

So, all of a sudden things are moving along quickly. Blood is drawn and IV is placed. IV fluids are started. Hana is finally napping. 

OR time is scheduled for 4:30, pacific time. Of course, that could always change. They want to move Hana to the CVICU right before surgery to secure a bed for her there. The hospital is completely full so we have to vacate the room as quickly as possible too!

Half A Year

It’s been a great week and a half! We’ve hit a lot of milestones too. First, we passed the half a year mark since Hana was first admitted to the hospital (this time around). Hana turned 21-months. I celebrated a birthday too.

Unfortunately, Paul was pretty sick most of last week and kept himself and his germs away and at home. We really missed him a lot but we tried to make the best of it too by doing a lot of activities. It was hard and I had a lot of tension headaches, but Hana and I had a lot of fun. 

Hana is still climbing a lot but now she is better at it and I don’t worry quite as much. She has also climbed most things in the room and has moved on to identifying letters and numbers (no, this does not mean she is a genius, she’s just watched a lot of YouTube cartoons!)

Watching our dog Poppy in the PoppOlympics

We continue to go to the music concerts on the adult side of the hospital. Hana loved dancing to the Latin jazz!

​​
We had a very special treat in that Poppy came for a short visit. Hana had the delight of feeding her treats!

The whole family together!

A few hours free of her NG tube!

Preparing for her dressing change.

Living on the edge!

We are trying to get better at habitual hand washing but Hana turned it into a bath!

​​
Below is Hana saying some letters and numbers.


This is what happens (many times a day) when Hana kinks her Berlin Heart pump.


Going to check out the hospital prom decorations
Trying to scale the side of her crib!
Watching Jeff, the guitarist, at preschool
This is what Hana’s bathtime looks like

This week Hana’s been throwing up more. I hope she is not getting sick! We are grateful that she has been doing so well. Not everyone is as fortunate and it makes our hearts ache for them. In a lot of ways things are easier here than at home – I don’t have to get up to start feeds in the middle of the night, turn off feeds, give late night meds, wash as many bottles, I don’t wash syringes or draw up meds, I don’t fortify milk or mix formula, there’s no running to the pharmacy or lots of appointments, I don’t order medical supplies, I don’t have to do laundry other than our clothes, I can’t cook dinner or walk Poppy. Ok, the last two I wish were different. Another thing, there is always someone around to help when you need an extra set of hands! We are grateful!
188 days in the hospital, 170 days post-Berlin Heart, 162 days on the transplant list.

Climbing

This post is long overdue. I’ve been wanting to post about something really special that happened last week, but I’m waiting on something, so I’ll just leave you in anticipation. In the meantime, I thought I’d better send out an update.

It’s been a busy couple of weeks. My sister and brother-in-law were here the first week of May and we had a really great visit, which included the excitement of the News Media Event. I’ll post more links as they become available. We’ve gotten some nice feedback so I’m really glad we decided to do it and I really hope it helps raise awareness on the importance of organ donation.

Hana also had another IVIG treatment on Monday and Tuesday of their visit. They had to poke her four times to get their blood draw and to get the IV started. It was awful and I hated seeing the fear in Hana’s eyes, it really hit me hard this time around. They ended up putting the IV in her foot and then another, better IV in the other foot. So, Hana was not able to walk or stand for 24 hours, or even leave the room which was HARD. Thankfully, their were three adults, full-time, to keep her occupied!
Hana-1418_web

Hana-1423_web
Getting silly during IVIG

We already got the results of her IVIG therapy and she dropped another antibody (If I’m even saying that correctly). So now she is down to 2, which I guess mathematically means she would not be able to accept an organ from 22% of the population because of her antibodies.

Weekends here are generally slow and boring. The nurses are staffed short so they are usually a little too busy to take Hana outside, maybe she can go out once a day. Strangely, we get most of our visitors during the week too so it makes for long days on Saturday and Sunday. It is nice to get visitors to break that up! Sunday (Mother’s Day, we will double celebrate next year when Hana is not in the hospital) and Monday felt like really, really long days. Then on Tuesday we started to get visitors all the way through Saturday.

Hana-iPhone-1538_web
A little bored!

Thank you to everyone who visits, it really makes a difference!

Hana continues to go to the music concerts on the adult side of the hospital. It has been really great. She has started to squeal with delight when she realizes that we are walking in that direction. Her favorite performer is still Jeff, the guitarist that plays at preschool on Wednesdays. Sometimes we see him at the concerts in the audience and Hana will stare at him like he’s a rock star.

Hana-1446_web
Staring at Jeff the guitarist.

One of Hana’s nurses has taken it upon herself to make cloth wraps with velcro to use over Hana’s abdominal dressing. This is to replace the ace wrap that we’ve been using. We are experimenting with what she’s made so far and she is perfecting her pattern based off of our experiences. I am so grateful and honored that she is taking so much time and energy out of her personal life to do this. They have been working out great! Jenny is amazing!

May 11, 2016
Replacing the Ace Wrap!

The big news of the week (other than the special announcement that will come in another post) is just that Hana has been climbing everything. She is climbing up her crib, on chairs and stools and on top of the table and on the stuffed chair and couches and up the slide. It was inevitable. I’m glad she is climbing but I can’t turn my back on her for a second! Because of all the blood thinners Hana is on it is really dangerous if she fell, not to mention her pump that goes into her heart! But it is really fun to see her go at it, I fully support it as long as we can keep her safe and she doesn’t irritate the cannula insertion site into her chest.

May 9, 2016

Hana-iPhone-1671_web

Hana-iPhone-1664_web

I also learned how to give Hana her Lovenox shot, which is just a subcutaneous injection, so its not a big deal. I want to be able to give it if the nurse is really busy, especially at night and I want to get Hana to bed.

The waiting has been getting to me a little bit. It takes vigilance on my part to continuously adjust my attitude about it. We are stuck here and we are waiting for a heart, but it doesn’t mean we can enjoy every day and every minute, not that I don’t, but I don’t need to be getting down because we’ve been waiting for five months. That’s right! Hana has been on the transplant list for five months, as of today.

Here are a few more pictures of some activity!

Hana-1493_web
Cinco de Mayo celebration

Hana-1488_web

Hana-1463_web
Watching the ants go marching one by one.

Hana-iPhone-1672_webHana-iPhone-1636_web

178 days in the hospital, 160 days post-Berlin Heart, 152 days on the transplant list.