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!

Happy New Year

I know, I know, this update is long overdue. I’m sorry. I’m tired. It must be having a baby that makes me too tired to keep my eyes open too long as soon as I sit down. Actually, I’ve been tired mostly because I spent almost the entire fall season sick. Since we got back from Hawaii in mid-September and we all contracted RSV, I’ve had a nearly non-stop flow of bad colds, with a week in between. Luckily, colds I got that the kids did not get first, I did not spread to them. Corrina got the croup right after Thanksgiving which spread to me and then Hana. It took me the longest to get well (five or six weeks), even Hana got better long before me. This is not bragging (but may sound like it) but I’ve had people say to me, “I don’t know how you do it. How do you do so much?” Well the answer is, I don’t, I hit a wall. Because my body obviously told me I was doing too much and I needed to take better care of myself. I also struggled a lot this fall with anxiety or maybe you would call it PTSD having to do with all we’ve had to deal with Hana. Dark thoughts kept creeping into my mind and it took a lot of energy to overcome them. Maybe I’ll say more about that later. This has been too much about me already. Now, more about Hana.

Hana is doing GREAT! She is LOVING life. Truly. She goes to Forest School two mornings a week for preschool. This is 100% outdoors in Golden Gate Park in the woods. They climb trees and play with sticks and dirt and pinecones. She loves it. I would have loved the idea of it even if she weren’t immune suppressed but its an added bonus that she is less at risk of exposure to other kids’ germs. The teachers are amazing too. If you are wondering what they do in the rain, they stay outside and play in the rain and mud! I dress her with a base layer of wool long underwear and she has good rain paints, raincoat and boots.

Hana started swim lessons this fall too. She also really loves swimming and is so excited that she is will to sit poolside for 30 minutes (with a stack of library books), while I take Corrina in for her lesson first. I think its amazing that, after nearly nine months of not being able to even take a bath submerged in water, that she loves swimming so much.

Lastly, the latest addition is that Hana started taking dance class. I was not going to add another activity but she was asking to dance all the time and when I showed her a few preschool dance videos (check out Petite Feet on Amazon streaming video) she fell in love. So she started a ballet/tap/tumbling class with just the right mix of structure and age-appropriate fun and she loves it! She is very motivated and driven all on her own. I think she actually would enjoy a more focused class, which surprised me, considering her age, but its more than good enough for now.

In between all these things we try to make it to the playground, the beach, the Children’s Creativity Museum (if you go, check out their Sketchtown exhibit, its amazing), the Bay Area Discovery Museum, the San Francisco Zoo, and the California Academy of Sciences. We keep fairly busy. I think I may be trying to overcompensate for all the time Hana has had to spend stuck in the hospital. But its now winter/rainy season here in San Francisco during one of the worst cold & flu seasons in a long time and we are hibernating a little bit to keep away from the germs. So, I think we will have plenty of inside play time.

Unfortunately, the last cold caused Hana’s biopsy in December to be rescheduled. She got a 1b, which Stanford treats as mild rejection (other transplant programs treat it as no rejection) in November and was supposed to get another follow up biopsy in December. Now, that’s rescheduled for the end of January. The theorize that the 1b was a reaction to the RSV in September. This is why it is so important for her to stay healthy.

Okay, now I’m frustrated because the rest of this post got deleted somehow. Oh well, I think you got the main points! Happy New Year!

Heart On The Edge

First off I’d like to address the title of this post, “Heart on the edge” is referring to my heart, not Hana’s. The last 24 hours have involved a lot of time spent at the hospital at Stanford, both planned but also unplanned.

Over the last week we have been potty training Hana which I will say has been much harder than I thought but also much more possible than I thought. I’m not sure how those two thoughts coexist in my brain, but they do. With one of Hana’s medications causing GI upset and a sudden and real urgent need “to go” I wasn’t sure if we would have success. But I was determined and she needs to learn some time and honestly I really think she is very ready. The only reason I’m saying any of this is because we pretty much haven’t left the house during potty training week.

This is why I was very surprised when Hana threw up late yesterday afternoon. We just haven’t been anywhere to pick up a stomach virus. So I thought it was a fluke. Then two hours later she puked again and I started to fear she really was getting a stomach virus. So I called in and was very surprised that they wanted us to bring her to the Stanford ER (no rush but they definitely wanted her to come in). I really thought they would just check in with us over the night to see how much she continued to vomit and if she could keep her medications down. But no. So we quickly packed a bag of necessities just in case we had to stay a couple days at the hospital.

What complicates all of this is Hana already had a Cath Lab/biopsy scheduled for the next morning. I had already talked to the Nurse Practitioner about our pre-op instructions and they always check in to make sure Hana has no symptoms of being sick.

At the ER they get us back to a private room and the cardiology fellow comes to do an exam and an echocardiogram. I might also mention that since her last vomit Hana sucked down 6 ounces of Gatorade and was clawing at Paul’s sandwich like a starving animal. She also was climbing all over the chairs in the waiting room.

After the echocardiogram, the attending heart transplant cardiologist walks in and does an exam and looks at the echo and talks with us. Hana is looking very well and I almost wished she’d act a little sick so I don’t seem like I was being dramatic with her episodes of vomit. They explain again why they wanted Hana to come in – dehydration can be dangerous for her, not being able to keep anti-rejection medications down can be dangerous and also, most scary, unexplained vomiting can be a sign of heart failure or rejection.

Ugh. This is our reality of the world we live in. It doesn’t mean that Hana is going to ever experience heart failure or rejection and I don’t live that way, but it does mean that it is always a possibility that must be considered. My heart is on the edge every time I again must consider this again. Why am I wasting time potty training when we could be out and about experiencing life? But I don’t live life this way, nor do I take it for granted like everything will now be “normal” and we never have to worry again, that would be denial. It’s a balancing act and my heart is always on the edge.

After getting blood work in the ER and some time spent observing Hana after she ate and drank, everything looked perfect and they let us go home with strict orders to return right away if she threw up again. They were kind of pushing to just admit Hana overnight just in case she kept vomiting they could give her IV fluids and it would save us a trip back to the hospital in the morning for her Cath Lab/biopsy, which they really didn’t want to cancel (she can’t be dehydrated for the procedure). But Paul and I really didn’t want to spend the night back in the hospital. So, at 1am, we went home.

We got home a little after 2am and after a few hours of sleep Hana and I left for the hospital at 7:30am. Things when smoothly for the preparation and during the actual Cath Lab procedure. I went back to the PACU afterwards and Hana was still out cold. They decided not to do the usual echocardiogram post-procedure because she had just had one the night before (the risk was low of a complication they might find on an additional echo).

One of Hana’s transplant Nurse Practitioner’s came to the PACU to do an exam, as usual. Hana was just starting to wake up. Unfortunately, the NP heard a gallop – an additional heart sound. Hana has had this before, with her original heart and it is often(? Or usually?) a sign of heart failure or rejection. I felt cautiously crushed. Now this gallop on top of unexplained vomiting was starting to look concerning, despite everything else looking good.

My heart is on edge. So the NP is trying to get a hold of the attending cardiologist from last night and in the meantime another transplant cardiologist is headed over to listen and the NP talks about moving us out of the PACU and getting an EKG and an echocardiogram anyway. Hana is wide awake and goofy in her post-anesthesia bliss and she is mostly concerned with eating nearly four cherry popsicles and watching cartoons.

The cardiologist arrives and does an exam and listens carefully. The gallop is gone. She explains that sometimes anesthesia wearing off can cause this or something like that but I don’t listen too hard because I’m too busy feeling relieved. They review the echocardiogram and a bunch of other things (like the pressures in her heart that they measured in the Cath Lab which were great) for awhile and again ask me to explain the vomiting episodes. But in the end everyone feels very confident and relieved that all is well and the cardiologist just reminds me that I can always call any time night or day for any reason even if it’s just, “something just doesn’t seem quite right.” Tomorrow we get the biopsy results that measure rejection.

As we are getting ready to leave, Hana’s primary transplant cardiologist shows up just to check in to see how we are doing after all the craziness. I always appreciate that. He reminds me that sometimes little kids just throw up for reasons we never know. Yup. I’ll take it as a fluke (especially because now I don’t have to bleach everything in my house to kill the germs).

Now I’m tired and Hana was really tired. We took off her diaper that we went back to for all this and I think she was happy to be rid of it. It’s like she’s just picking up where we left off in potty training. I’ll take it, happily.

One year ago

On this day last year, December 7th, Hana was getting her Berlin Heart. I can’t believe all that has happened in the last year and we are so incredibly grateful to be where we are now – HOME! Not in the hospital. I do wish we were spending time with some family for the holidays but we will get to do that soon enough!

I have good news and sad news. First, the good news is that Hana gained 100 grams when she was weighed last Wednesday! Everyone was quite happy. Let’s just hope this continues as Hana finds her own, new weight gain curve.

The sad news is that our friend Zack passed away on Wednesday. He had a double lung transplant in October and ultimately it did not go well. After being on life support, ECMO, for weeks he decided he was done fighting. It seems that everyone who knew him is heartbroken. I know we certainly were and still are. Zack was a good kid who was dealt a crappy hand, although he was blessed with devoted and loving grandparents who were also his legal guardians.

Zack’s family lives outside of Tucson and his grandfather, Jay, moved with Zack to the Ronald McDonald House to care for Zack while he waited for donor lungs. Jay was one of Hana’s favorite people at RMH and he has an old-school, east coast, unpolished chivalry about him that is friendly, thoughtful, respectful and decent without unnecessary refinement. As you can imagine, this has been heartbreaking and devastating for Jay and his wife Patty. Not only did they have to return home without Zack but all of this, I’m sure, has been a financial strain for them (they are both still working). If you feel moved to do so, please consider contributing to their GoFundMe: https://www.gofundme.com/f4e4kyus

Rest In Peace, dear Zack and may all who loved you find peace too, in their own time. I hope Jay and Patty don’t mind me sharing this photo:

Zack and Jay
Meanwhile, at the Yago house, we are getting ready for Christmas. So far, Hana seems very excited about the Christmas tree and Christmas songs. She’s been enjoying taking some of the Christmas ornaments off the tree! We’ve been busy making some of our own homemade Christmas ornaments too. We are trying not to go crazy with gift buying, but it’s been a little hard after giving and getting nothing last year.

Speaking of Christmas gifts, if you are looking for a nice artwork gift to give this year, our friend Gina who painted the portrait of Hana, has a nice selection prints and original artwork for sale for a limited time. Check it out: http://eugeniamancinihoran.bigcartel.com


I know I am planning to get a print! Gina has been a great, supportive force in our lives.

Last but not least, I want to share a few photographs a friend of ours took for a project several weeks ago of Hana and I at home.

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Photograph by Francine Zavala
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Photograph by Francine Zavala
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Photograph by Francine Zavala
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Photograph by Francine Zavala
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Photograph by Francine Zavala
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Photograph by Francine Zavala

Here’s a photo from my iPhone:


 

Heart of Hope

You want to hear something crazy? There is a guy, a couple years younger than me that went to the same small, rural high school in Pennsylvania. He and his wife had two kids and when the younger one was six months old they were told she needed a heart transplant. She eventually was put on the Berlin Heart and got her transplant (it was actually her second transplant). It’s crazy only because if you knew the rural area where I grew up and how many kids need a Berlin Heart you would not believe the odds. Unfortunately, about seven months after the second transplant their daughter died of sudden cardiac arrest. I encourage you to read the story, I can not do it justice here. My heart aches when I read the story. I’ll be honest, it is also terrifying.

In honor of their daughter, they created Heart of Hope – The Caralynn Titter Foundation whose mission is to provide support for families dealing with pediatric heart transplants. This Saturday (that’s tomorrow!) they are doing a fundraiser race for their foundation – the 2nd Annual Heart of Hope 5k & 1 Mile Family Fun Run in Newark, Delaware. My very oldest (not eldest but most number of years) friend, Erin has organized Team Hana and if you’d like you can donate to their team to support an excellent cause (because if you are reading this blog you probably understand how important it is to support families dealing with pediatric heart transplants!) click this link.

Thank You!

In Hana news, its been a good week. Things feel like they might be settling down instead of just trying to keep our heads above water. Hana had another cardiac cath and biopsy on Wednesday. The results are good – pressures are good, same as last time, and biopsy results are 0! I am so relieved! I always have a build up of anxiety a few days before.

Hana even gained back some weight! Her eating tends to have sporadic results. One day she loves her smoothie and the next day she won’t touch it. One day she wants to eat cream cheese and the next day she just wants strawberries. I guess she is kind of a normal toddler. Lately she seems to want fruits, veggies and water which would ordinarily be wonderful but I keep trying to push the high calorie foods as much as possible.

Lastly, Hana’s sleep patterns are starting to really wear on me. She has always been the kind of baby/kid that needed a while to settle into sleep but it has gotten bad. Naptime is not usually too bad, 30-60 minutes (unless grandmom is trying to get her to sleep in which case I just hear lots of noise and laughing coming from Hana’s bedroom). Bedtime is very challenging. Hana tosses and turns for one to two hours before she falls asleep. By the time she is asleep it is so late and I am so tired it is hard to get anything else done. I’m wondering if what’s causing this is the steroid that Hana has been one since her transplant.




 

Overdose

Thursday night I was drawing up Hana’s medicines for that night and the next day. I was a little distracted because I was setting up the evening meds so my mom could easily give them. I was also in a slight hurry because Paul and I were going out to dinner. I grabbed the Omeprazole (to treat Hana’s stomach while on some harsh meds) and the Amlodipine (a calcium channel blocker used for high blood pressure) out of our medicine refrigerator. They are in the same size bottle and virtually the same color. I drew up 5mL of Amlodipine and two syringes of 1.5 mL each of Omeprazole. The problem was that it should have been opposite. Hana gets 5mL of Omeprazole and twice a day she gets 1.5mL of Amlodipine.

That night my mom unknowingly gave Hana 1.5mL of Omeprazole. The next morning I always start with Omeprazole as Hana’s first medicine. It always makes her gag and is more volume than other meds and I don’t want her throwing up her other meds from gagging, so I give it first. She didn’t even flinch when she got the 5mL of medicine. Then I have her the Tacrolimus (anti-rejection med). Then I waited about 20 minutes and gave her Valcyte (to prevent cytomegalovirus), diltiazem (protect coronary arteries, lower blood pressure), and then I picked up what was supposed to be Amlodipine and I thought it looked a tiny bit yellowish. When I gave it to Hana she gagged and then I knew I had made a mistake. I knew it was a big mistake as I knew Hana was already on the highest dose of Amlodipine she could get. I also know that too much of a blood pressure lowering medication is a dangerous thing.

I immediately called Stanford. They started discussing what to do and had me take another blood pressure (100/62). Then they asked me to call Poison Control to find out how much was a toxic level. So I called Poison Control (and was glad the number was already programmed into my phone) and they said they send people to the ER if it’s 0.3mg per kg (that’s about two times Hana’s dose) and Hana got 0.45mg/kg. I was already gathering stuff to go to the emergency room at Kaiser while the pharmacist finished talking to me. He did say she would probably be fine but I needed to go in. Then one of the doctors from Stanford called me back to discuss the plan. 

My mom and dad are visiting but Paul was not at home and had the car, so we hurried out the door with Hana to walk to the ER. It’s only five blocks (but a few uphill) but it was pouring rain. I kind of ran and pushed the stroller and I arrived at the emergency department drenched and out of breath. Paul had gotten there a minute before us. Hana was just fine through all of it. My mom and dad arrived a few minutes later just as they were taking us back.

They got Hana set up in a code room and took her vitals. Everything looked great. Hana was not happy about being there but adjusted like the little champ she is. The doctor got all his info and went to call Stanford. They decided to monitor her in the ED a bit longer and then move her up to the pediatric ward until 8pm that night. They decided against transferring her to Stanford because it just didn’t seem necessary. They brought in a dose of atropine (the antidote) in case they needed it. Of course they wanted to get an IV started in case they needed it and I requested the pediatric team to come and start that. While we waited, the attending physician from the pediatric ward walked in and that’s when we got the greatest, serendipitous surprise.

In walked the doctor who said, “you probably don’t remember me …” but I said, “Of course I do!” I turned to my mom who was next to me and said, “This is Katherine Herz. She is the one who ordered the first chest x-ray that showed Hana’s enlarged heart!” I wrote about Dr. Herz in “The First Thank You“. She seemed excited to have the opportunity to care for Hana again and had been following her progress. It seems that the first incident with Hana also made a big impact on her and she said she used Hana’s case all the time as a teaching tool. I was very glad to have the opportunity to thank her in person. I don’t think a week has gone by where I haven’t thought about trying to send her a meaningful thank you note, but she was hard to track down. 

We chatted a little bit about how Hana was doing and what was going on. I asked her what made her order a chest x-ray because so many doctors told me that most pediatrcians would not have done so. She told me (humbly, I might add, saying it was the great training she got at UCSF) that it was February and she had seen sick kid after sick kid. Then Hana came in with a persistent cough and a little vomiting, just like lots of sick kids, but the first red flag was that Hana didn’t have any other symptoms (runny nose, sneezing) and was nursing so little that I had to pump afterwards. She said something wasn’t adding up. The second red flag was when she listened to her heart it sounded “distant” and she couldn’t hear anything on the left side at all. That’s when she was worried it was something pretty serious. We are grateful to her, who knows how badly Hana would have gotten before she was treated. If it had gotten much worse Hana might have had a stroke or even worse.

Then a bunch of nurses showed up to start the IV, which was the worst part of the day. It ended up not being the pediatric picc nurses (their first try failed) but our fantastic ED nurse who got the IV started. Unfortunately it was in Hana’s foot so she wasn’t allowed to stand the rest of the day. Then Hana got transferred upstairs to the pediatric ward where we waited out the rest of the day. They kept Hana hooked up to the monitor for O2, heart rate, respiration rate. They took her blood pressure every 30 minutes. I was able to give Hana the rest of her anti-rejection meds but they held her enalapril (of course, it’s another blood pressure med), lasix, diltiazem, and other non-essential meds (about five more). Nothing significant happened. Her blood pressure never got below 91/52 (which is actually the range they want her in).

The rest of the day we ate hospital food, played with Hana, watched cartoons. Paul worked. Dr. Herz came by again to chat some more. The resident checked in with the doctor at Stanford at 7pm and finalized the discharge instructions. At 8:20, 12 hours after the accidental overdose, we were walking out of the hospital.

One of the NPs from Stanford called me right before discharge to see how I was doing. I thought that was great. Not one person I encountered had even a hint of criticism towards me. Everyone makes mistakes and has made mistakes. At least I caught it so early. As for my own reaction, I was so focused on getting the situation treated that I didn’t have room to feel bad. Later, I did feel bad, especially when Hana was getting her IV and was crying and screaming. I felt bad my parents had to spend a whole day of their visit in a hospital. But I was surprised how little I felt bad. I kind of felt guilty for not feeling more guilty. But I think, by far, the main feeling I experienced was Alarm. I was very alarmed, even frightened, that I would make such an error. I think most people who know me would say I am always on top of these things and I’m very responsible and cautious. But even I make mistakes. So the real lesson is humility. Be kind to others who make mistakes, be kind to yourself and come up with methods to prevent making future mistakes.

We are grateful to the great team of people at Kaiser and Stanford looking out for us! It was really great to see Dr. Herz, the silver lining in all of this!