transplant – Hana's Heart

The Donor Family Letter

Posted on February 1, 2018 by kathleenyago

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

Half A Year

Posted on May 25, 2016 by kathleenyago

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!

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

Watching Jeff, the guitarist, at preschool

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

Posted on May 15, 2016 by kathleenyago

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!
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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.

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!

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

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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

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

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

Putting Your Heart On Ice

Posted on May 1, 2016 by kathleenyago

Saturday morning I had the rare pleasure of driving in the car. I was listening to West Coast Live, which is a local San Francisco radio show that is broadcast on public radio. They were interviewing Eleanor Coppola (yes, the wife of Francis Ford). One thing she talked about was something Francis had read in a book and it was the phrase, “Putting your heart on ice”. She described it as meaning a time in your life when you are frustrated and you aren’t doing what you want to be doing, what you were meant to be doing and you were just slogging through, maybe to just make it through a difficult phase.

Some would say that right now we are “putting our hearts on ice”, as we wait. I’ve heard people say that our lives are “on hold” until we can get back home. Certainly, this is true in many ways. But, life goes on no matter what and we’ve tried to live it as fully as we can, even when we are stuck in a hospital. Or, you could we have the privilege of being cared for by an amazing group of nurses and medical staff at an amazing hospital on an incredible life saving device. Because of this, Hana has a chance. We get to watch her grow and develop and really be an incredible joy in our lives. So, our lives do have a lot of joy. Maybe we are exactly where we need to be.

It also really struck me how ironic the phrase “putting your heart of ice” was in that it is exactly this that will happen when Hana gets her chance, her gift of life. A donor heart for Hana will arrive on ice. I hope we can always honor that gift with lives full of joy and gratitude.

It is with gratitude that I’d like to show a couple of things, that Hana has received lately. A couple of nurses made some things for Hana (and one thing is in the works).

Hana-4638_web — Custom made window cling!

Hana-iPhone-1378_web — Hot air balloon decoration!

Then, I’m very excited because an artist I first discovered years ago in Sackets Harbor, New York, when my sister lived there, heard of Hana’s story. She was inspired to paint one day and realized she was painting Hana. She shared this painting with us while it was in the works, but it recently was completed. Its been very exciting and we are really in love with the final work! I feel it really captures a certain part of Hana. When I showed Hana a picture of the painting, she said, “Hana! Hana!”

Hana-iPhone-1368_web — by Eugenia Mancini Horan

To see some of her other work, you can follow her Facebook page, The Art of ima.GINA.tion. Or you can visit her website.

Lastly, Hana is still doing great! She did slip and fall and hit her head the other day. This is always a big deal because she is on so many blood thinners. They do neuro checks every hour for the first four hours and then every four hours. She is fine. Tomorrow she has another round of IVIG therapy. She had two play dates in the last week that really made her day! Monday, another one of my sisters and her husband arrive. We are really looking forward to the visit!

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164 Days in the hospital, 146 days post-Berlin Heart, 138 days on the transplant list.

ABO Incompatibility

Posted on April 27, 2016 by kathleenyago

Today, Hana’s transplant listing was revised so that she could receive offers for hearts that are not of compatible blood types. For children under two, this has been a common practice in Canada and Europe. This made me very nervous at first.

Yesterday Hana had to get unexpected blood work done to see how much incompatibility she had with other blood types. Hana has A positive blood, so she could receive a donor heart from an A positive and O positive blood type donor. When they measured her incompatibility with type B blood, back in December, she measured 64. I don’t remember the specifics of “64” but I think it means something like the blood titers/antibodies to type B blood was 64, which is high. She would not be able to accept a type B blood donor heart. When they did the blood work yesterday her titers were down to 4!

UNOS (United Network of Organ Sharing) recently changed their rules for children under two, allowing ABO incompatibility to be considered in their listing. Research has showed that children that received an incompatible donor heart actually did better (it was suggested to me that this is because they are watched more carefully). The cutoff is two because a child’s immune system is not fully developed at this age. So, this means for Hana, that when a donor heart because available, she will not be passed up because she has an incompatible blood type. The reason for her titers to be down to 4, I believe, is because of her IVIG therapy.

So, this is good news! (It still makes me just a little nervous.)

In other news, Hana is doing great. My mom left on Monday morning, we were very sad to see her go. I think Hana considers my mom her favorite playmate. Hana is saying lots and lots of new words and continues to use her sign language. She has been a real delight. We are chugging along and I’m trying not to get weary. It’s good to have something like the Summer Scamper to work towards! Thank you to everyone who has donated!

I also stopped pumping about three weeks ago. It has dramatically changed my quality of life! It also means there is now a finite amount of breast milk for Hana to drink, so hopefully she makes some improvements with drinking cow milk and eating! (Some days are better than others).

Below is another beautiful image from Anne Daiva.

Here are some more images of Hana (that I took…)

Hana-4840_web — For some reason she loved wearing the gloves.

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160 days in the hospital, 142 days post-Berlin heart, 134 days on the transplant list.

Summer Scamper

Posted on April 22, 2016April 26, 2016 by kathleenyago

The rest of this week has been great! I decided to sign up to do the Summer Scamper 10k race on June 19th. It is a fundraising event that benefits the children’s hospital were we are living. You can visit my fundraising page here: https://my.supportlpch.org/fundraise?fcid=661013
You can also visit our Hana’s Heart team page. If you’d like to join our team, please let me know! My friend, Suzanne, is organizing the team. It sounds like it is going to be a great event. The unit here forms a team each year.

This week, Hana got to go to the adult side of the hospital not once, but TWICE to watch live music. She seemed very excited and couldn’t stop looking all around her – there were so many new sights and people. During the music, she mostly wanted me to hold her and dance around. She kept signing “dance”! Our amazing nurse practitioner accompanied us both times.

My mom is still here and she and Hana have been having a lot of fun together.

Hana also had another great play date this week with friends from San Francisco. As you can see in the photo below, Hana has a backpack on. I very reluctantly got Hana a little backpack with a tether on it. She is just getting too fast and I’m afraid she is just going to take off running and forget about the drive line and really hurt herself.

In other news, the issue of freedom outside seems to be clarified in Hana’s favor. This does not mean that a nurse is required to take Hana out front, individual nurses may still decline to take her, but it was made clear to everyone what the protocol is and how to handle it and why it is important to Hana. From the very beginning the medical team has said that they want and expect Hana to meet all of her developmental milestones despite being in the hospital and on the Berlin Heart. I think going outside and getting to explore the great outdoors is important for that! I am very grateful to everyone who has helped make Hana’s life in the hospital as enriching as it has been!

Sadly, things with our dog, Poppy, have not been going well lately. She has been acting out and doing things like peeing on beds, snapping at dogs and whining all hours of the night. This has made it very difficult for the various generous people who have been looking after her. When we pick her up and have her at home with us she is not like that at all. We are not yet sure what we are going to do but we are brainstorming different possibilities.

On Friday, a really wonderful photographer, Anne Daiva, came to the hospital to take some Hana and family photos. Below is a quick sneak peek, but hopefully we will get to share more wonderful images when we get them!

Hana-iPhone-1248_web — *Photo Credit: Anne Daiva Photography*

The rest of the images are just life as it is as we wait!

There have been some other fun things that I hope to share soon.

155 days in the hospital, 137 days post-Berlin Heart, 129 days on the transplant list.

My Name Is Hana

Posted on March 29, 2016March 29, 2016 by kathleenyago

Today Hana said her name for the first time. Just in case you were wondering how to pronounce “Hana” I will tell you it is not like the name “Hannah”. You say it like “hah-nah” or the town on Maui with the same spelling (Hana, the road to Hana) or you could say it rhymes with Mama. Either way, Hana kept looking at herself in the mirror during her PT/OT session and saying her name. Later in the day, she would sign “name” and say “Hana”. It was very exciting!

The few things to report are that the surgeon came back to the room to re-tie Hana’s new pump since the cannulas seemed to have some torque in them and the pump was not lying flat. Then Hana’s latest bloodwork showed that her liver enzyme tests were continuing to trend down since stopping the Zantac.

It continues to be a little difficult to get out of the room as much as I’d like. Hana only gets outside maybe once a day for 15 minutes. I find myself frustrated more than ever. I’ve been feeling a bit impatient and some small things are getting to me a bit. I’m tired of random people barging into the room, especially without knocking and especially when I am pumping. I am tired of personal belongings being thrown away. I get frustrated when Hana is clearly sleeping and the sign on the door says so yet people insist on coming in and speaking at a normal volume. I get upset when the housekeeping folks do not change their gloves in between patient rooms. Then they touch biohazard trash and move our personal belongings with their contaminated gloves. I think mostly I am just weary of not having much privacy or personal space. I think people forget that their workplace is my home. Sometimes I just need to vent and then figure out a way to make things better. We’ve been told that people start to get a little crazy after the 4-month mark of life in the hospital, it seems we are trending in this direction!

I am sad to report that another young child from the CVICU has passed away. Tonight I learned that Jacob, who had hypoplastic left heart syndrome and then a heart transplant and then a host of other complicated medical issues, passed away on March 12. He was just shy of being 14-months old and had spent his entire life except maybe eight weeks in the hospital. It is very hard to hear this type of news.

People have asked how they can help. Right now, what is very helpful is prepared food. We are weary of the cafeteria food and Trader Joe’s frozen meals. We only have a microwave. The other helpful thing is for visits with younger or youngish kids. This is for Hana who has been really, really loving seeing other kids! Everyone just needs to be healthy and willing to use hand sanitizer.

We have some fun things for the blog coming up soon, so stay tuned!

Thank you again for all the support!

131 days in the hospital, 113 days post-Berlin heart, 105 days on the transplant list.

Pump Change

Posted on March 26, 2016 by kathleenyago

For the last week the team of nurses, nurse practitioners and doctors have been more closely following the deposits in Hana’s pump. I realize using the word “pump” is a little confusing especially since it is both a verb and a noun. The Berlin Heart is both the Ikus (air compressor and computer) and the external “chamber” of the heart through which you can physically see blood moving. It is the latter part, the chamber, where deposits collect and clots may form. They decided that an “area of deposits” had caused enough discussion that it was time to change out the pump (chamber).

If a large deposit or clot were to break off from the walls or valves of the pump chamber than that could cause Hana to have a stroke. This is obviously very serious. Usually by now they have already changed out the pump but somehow Hana made it 110 days with the original pump that was implanted.

When Hana’s surgeon was done with his transplant surgery he came up to the floor where we were getting ready. We had moved a bunch of stuff out of the room to make room for carts and equipment. They had certain drugs and blood on hand downstairs in the CVICU in case we needed to go down there. We moved the position of the crib and they set up a sterile field next to it.

Hana had to have her arms and legs tied down with restraints. I put on the iPad and let her watch Rachel And The Trerschoolers. Everything was set up. The surgeon scrubbed down the cannulas with betadine. They unhooked her from the Ikus and hand pumped. Then the surgeon cut ties holding the pump on and clamped the cannula. He put the new pump on, which was filled with saline, and the OR person (surgical nurse, I’m guessing) put the new ties on while Hana’s bedside nurse hand pumped. The actual procedure time was only a couple of minutes.

Hana did lose the 15mL of blood that was in the old pump. Some of it did flow out and over the sterile cloth and onto her diaper and legs. I requested to have the pump when they are done with it (they examine the deposits). I think it will be great for Hana to be able to have it some day.

Hana did great during the whole thing. There was one point where she squirmed, when the surgeon had blocked her view of the iPad! She just seemed so relaxed! It was really interesting to watch the surgeon at work since this is the only scenario in which I would have that opportunity. He was great. Serious, down to business, very clear on who is doing what. He is quick and moves on. He seems very busy and does not linger. It seems really nice that we do not have to go to the OR for the procedure. We don’t even have to go to the CVICU.

Everything went well. They monitored Hana for 30 minutes after the procedure. Then we hung out, had some lunch and then a nap. In the afternoon Hana and I had some visitors which included some older boys but they were really great with her and she loved their company!

Overall, it was a good day!

128 days in the hospital, 110 days post-Berlin heart, 102 days on the transplant list.

19-months Old

Posted on March 19, 2016March 19, 2016 by kathleenyago

Today Hana turned 19-months old. It is also the 4-month mark of Hana being in the hospital. It seems like a lot longer than that. Below is the sign Hana and I made for the door to her room. We are really hoping that her nurse, Marisa, gets some special recognition for doing such an amazing job of handling the situation when Hana’s Ikus stopped. I think everyone deserves some kind of recognition because there were many others that also responded so quickly, it was really a great team effort.

Our restrictions with plugging in the Ikus have been mostly lifted. We still have to keep the Ikus plugged into the wall while Hana is in her room. This does limit our mobility in the room but we are working with it. Other than that we are just trying to get out of the room for twenty minutes at a time so that we wear down the battery each time.

I took the plugging into the wall situation very hard. Sometimes all of this hospital living can wear on you. Actually, having a child with a long term medical condition can wear on you. I deal with it by having a positive outlook and really trying to shield myself from negativity but it is a fine line. This latest thing just pushed me over the line, but I just remember that really, we are extremely grateful. Hana is being cared for by an amazing team of people in an amazing hospital. She has a very serious heart condition that has treatment options, even though transplant is not really a cure (it is swapping one heart condition for another). Not everyone has options. So we are very, very grateful.

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I know I complained a little about her nurse the other day and I feel bad about that. The nurse is a very kind and caring person who is dedicated to giving Hana the best care she can. She is very attentive. She is a really nice person. I just was not thrilled about how she reacted to the light on the Ikus being a little slow to go off. But we are grateful to have so many great nurses.

This afternoon we got to take Hana outside twice. The first time we went to the atrium and took some pictures of Hana without her mask on (just for a few minutes). Today we also changed out her NG tube so she got several hours break from the tube and we got to take some tube free pictures too! She really loved smelling the flowers! She scrunched up her nose when she was working on smelling them! She loved inspecting the small flowers.

Later in the afternoon we were able to take her out to the grassy area in the front of the hospital. Hana was thrilled to see some new sights. There were some big birds (ravens) and squirrels. She also got to feel some grass! It was very exciting for her.

Thank you for all of your support!

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122 days in the hospital, 103 days post-Berlin Heart, 95 days on the transplant list.

Another Freedom Gone

Posted on March 17, 2016 by kathleenyago

I have a bitter taste in my mouth, so my tone may reflect that. Tonight they took another freedom away – now Hana’s Ikus must stay plugged into the wall, rather than the extension cord. One time, when we plugged the Ikus back in to the extension cord, it took three or four minutes for the red light that indicates no warnings to go off. Somehow, I feel like it has gotten carried away. I don’t know how the message got relayed but I felt like our nurse was not really getting what I was saying and was kind of adding more to what was going on (or not going on). I hate complaining about nurses but I’m just so annoyed and irritated with myself for saying anything at all.

Hopefully this is not a permanent change but it has already been harder. We are definitely not getting out of the room as much and I can tell it is wearing on Hana.

Hana did have a great play date today when two kids from the neighborhood came down to visit and Hana was VERY excited and happy.

In medical news, Hana was taken off of the drug Zantac altogether because the pharmacist felt like it was the only way to really see if this drug is what is causing Hana’s elevated liver enzymes. I don’t even know if the Zantac was really working. The exciting news of the day is that the IVIG therapy seems to be working. The very basic report I heard was that of the ten antibodies that were high, six of them have come down. I don’t know much more than that but it is good news!