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!

No Word Yet

Things have been really good. Hana is making progress in her feeding therapy – we’ve dropped another feed and she continues to eat and drink more. Her Prograf levels are within the goal range (finally!). She is happy and we are making it out for trips. Unfortunately, the team at Stanford has decided that Hana is not allowed to be at home full time yet, they want her drug levels (Prograf) to be stable. We are not taking Hana to get more blood work until next week, because this week was stable they will make no changes. So, the soonest they would get another drug level would be next week with her blood work so it seems the soonest we would be allowed to take her home permanently would be next week.

I am so disappointed with this, but trying to just move on.

Things at the house are coming along. Unfortunately, our garage was burglarized. It seems when you are having your house painted (which we are, we need to get it done before Hana can be at home permanently) and there is scaffolding up it is like posting a big “Welcome!” sign for thieves. It is hard to say what was taken because I don’t know what was where anymore but for sure a PlayStation and the painter’s tools were all stolen. But the house is looking great and everything with the paint job should be done this week.

Another unfortunate incident is that our bike at the Ronald McDonald House was vandalized. As far as I can tell only the front wheel was stolen. It is almost a guarantee that someone at the Ronald McDonald House is the one who vandalized the bike, because the area is only accessible to residents. I also think I know who did it and the kid from the family has since gone back home. This is hard for me to swallow.

But again, we are trying to move on.

Things inside our house are slowly getting done. Things are getting organized and cleaned, bit by bit. It kind of feels like we are just stuck in between moving – we can’t really move out or move in to any place. I get very sad when it is time to pack up for the night and go back to the RMH. I especially hate leaving Poppy. Hana seems to really enjoy having Poppy around and I just can’t wait for our family to be a complete unit again!

We’ve been trying to have a lot of fun with Hana. She still has to endure days where we get chores or errands done and certainly where we spend most of the day at the hospital for appointments. In between we try to go to the playground, pool or the beach. We had a great time over the weekend taking the Roaring Camp train from Felton to the Santa Cruz boardwalk. We had Hana wear her mask the whole time (with a few breaks when we could be away from people) and I was constantly wiping off her hands, but it was great fun!

Tomorrow (Wednesday) Hana has another clinic visit. I’m going to advocate again for them to let us move home, but I’m feeling kind of defeated. Still, we are very grateful and loving life outside the hospital!

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Two Months

Two months ago today Hana’s chest was closed up after getting her new heart and we saw her wheeled out of the OR elevator into the CVICU. Just thinking about that moment is overwhelming with emotions – relief, joy, fear, grief and some emotions I don’t have names for. I think of the family of the donor and I like to picture a little spark of life from their child beating inside Hana. Maybe that picture can bring them some comfort or instead knowing that we honor their child every day by living life fully and with gratitude.

There’s some unfinished business I’d like to tidy up before continuing. I was reminded when I saw that today’s “Feel Good Friday” blog post from the hospital is an update on how Hana is doing post-transplant. You can read the story here:

http://healthier.stanfordchildrens.org/en/hanas-happy-with-her-new-heart/

I want to share two things of unfinished business. The first one is about one of Hana’s nurses. One of Hana’s nurses, Marisa, is the nurse who responded so amazingly the day Hana’s Berlin Heart stopped working. I wrote about it in the post “Emergency“. Well, because of her amazing response (and also the other nurses who responded were amazing in their own right) Marisa was awarded the Daisy Award, which is an award thanking extraordinary nurses. I was so proud when she got the award, even though I did nothing, but I was very proud of Marisa and grateful for having such an excellent team supporting us. She won the award back in May and it was the special news that I mentioned in the post “Climbing” but I was waiting to share it and then Hana’s transplant happened and I forgot! Here is a picture of the sign Hana and I made to hang on her hospital room door after Marisa won the award.

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My other order of business is that I wanted to share some more of the beautiful images taken by photographer Anne Daiva, while Hana was still in the hospital and on the Berlin Heart. We just recently got to see them. They really remind us where we’ve been, how far we’ve come and how grateful we are. Life is so good.

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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
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Photo Credit: Anne Daiva Photography
In current news, Hana had a great week. We spent the day at home on Tuesday and got a lot of things organized and cleaned. Several women in the neighborhood came over and got to work. I love my neighborhood and my neighbors! There’s still a lot to do but it might have to wait until the painters are done painting the house. Hana seemed to love being home and drank more milk than I’ve ever seen her do. On Wednesday I took her to a public wading pool (we went early and left when it started to get a little crowded). She loved it! She was smiling and laughing and splashing! On Thursday she had her feeding appointment and in the evening she got to go swimming again! Thank you Stacy! We had a great time.


Still, when I hear stories of other kids that don’t do so well I get very scared. It continues to be a bit of a recalibration every time, every day. Heart transplant is not a cure. Things are going well today, I celebrate that. I focus on what is going on now. I suppose it will be something constant that I will need to remind myself of, but, not only does it stop my fear from blooming out of control, but, what I am left with is how grateful I am for what I have today.

Lastly, Hana had her clinic visit today. They did not give us a date when we could move home. They want her Prograf levels to be consistent before they let us go. I think that is reasonable. They did seem to think that two weeks would get us there. They also said that Hana could go to music class when we get back home and that she could attend birthday parties! I was pretty excited to hear that. Maybe we will even have a birthday party for her! It is coming up very soon!

Thank you everyone, for all that you’ve done.

 

 

People Can Be Awesome

It’s been a really great week for us. It has not been a great week for some of our neighbors here at the Ronald McDonald House. The news has been crowded with depressing stories ever since Hana was discharged from the hospital (Orlando shootings)

That’s all I’m going to say here about the news. I will say there are a lot of sick kids around here, some get better, some get worse, some hold steady. I hope we can all help each other the best we can at any given time. Sometimes you are the one who needs help. I’ve been that person. This week an amazing group of moms in a Facebook group in San Francisco rounded up an amazing collection of newborn gear for a mom here that needs it. This mom is one incredibly strong woman who I would never ever describe as needy but life has handed her and her family an incredible challenge and it warms my heart that people have jumped at the chance to make someone else’s life less stressful when a baby is coming and an older child is very sick in the hospital and the rest of the family live far away. People can be awesome too! 

People like Gina are awesome, who worked so hard to raise $3,000 for Donate Life America in honor of Hana and her donor. I started writing this post Friday night before I dropped my phone (I write almost all these posts using my phone) on my face because I was so tired, so I decided to finish it tonight (Saturday). I’m glad I did because now I can include the blog post from Mitch at Apericots. Mitch sent us the Tiny But Mighty t-shirt seen in this video. The blog post is about Hana and Gina and a little about me but it’s mostly about Hana and Gina. It’s a great story! Here is the link:

http://www.apericots.com/blog/the-good-in-the-world/
People like Mitch are awesome!

This past week we went to a new playground called Magical Bridge Playground, it was developed for special needs kids and has an incredible assortment of play structures that are fun for all kids. Hana’s physical therapist recommended it. We’ve had a great time going four times this week! We met up with some San Francisco friends one day. One time I even jogged there (and back) with the jogging stroller. I decided on the way back midway between mile 7 and 8 that I am probably crazy for taking on this adventure and I wish I could bottle up my motivation to be used in other areas of my life. 

Besides physical therapy, Hana had feeding therapy, bloodwork, an echocardiogram and a clinic visit. Feeding therapy is actually showing progress! Hana loves pickles. She’s trying more and more foods. It still requires a lot of effort on my part every day but small steps are being made. Blood work showed that Hana’s Prograf (tacrolimus) levels are still way too high, but not dangerously so. Her echocardiogram looks great, for a transplanted heart, which I think means that it looks like a transplanted heart and it is functioning great. The only note was that the walls of the heart look a bit thick, which they said is not surprising. Lastly, Hana is finally gaining weight and is above her pre-transplant weight! This is definitely the way we want things to go especially if we are talking about tube weaning. The doctor said, about her clinic visit, that there really wasn’t much to talk about!

Hana’s blood pressure continues to be high, but it seems to be trending down a bit. She is nearly maxed out on her current blood pressure meds so we just need for her Prograf levels to come down and her blood pressure should follow. Hana’s last scab fell off on Friday – the larger of the two Berlin Heart cannula sites. I’m giving the site a few more days and then Hana will be able to take a real bath and she will be able to swim, for the first time since mid-November! We are so excited!

This coming week we have physical therapy, feeding therapy, clinic visit, blood work and another cath lab/biopsy. It’s busy! They moved up the cath lab/biopsy because they were having some scheduling problems. After that we should know more about some medication levels and weaning. On Monday we hear about the results from her last round of IVIG therapy and we will know if we need to continue it or if she is done. Then, maybe, we will even have a clearer sense of when we can move home! There is still work to be done in and around the house. The exterior is being painted (we were advised to do so before moving back). Amazing friends are helping to clean and organize! The backyard needs to be free of all the dried leaves and the compost pile. I am so excited! In the meantime, we are enjoying warm summer weather while it lasts, since it is not really ever warm in San Francisco.



Lastly, there is a family here from Hawaii whose 14-year old daughter, Destiny, desperately needs a bone marrow transplant. Unfortunately, there is no match for her in the registry. Destiny is of Japanese, Filipino, Hawaiian and Puerto Rican descent. Ethnically mixed people are the hardest to match for bone marrow. There is less than 4% chance of matching ethnically mixed people from the bone marrow registry. If you are not already registered, I urge you all to register to be a bone marrow donor. If you are of mixed ethnicity similar to Destiny, I urge you to register or encourage someone you know to register right away, maybe we can still find a match for Destiny that will save her life.

Hana Visits Home

Its so strange to say that we are “visiting home” but that is indeed what we did. It makes you think about what “home” really means and for us it is still our place in San Francisco. That’s where we want to be, soon! On Saturday we made the trip, with Hana, to our home in San Francisco.

Hana got out of the car, walked out of the garage and immediately started climbing our front steps. This is all after we picked up Poppy and the two of them were quite excited to see each other. Anyway, Hana walked in the front door of our house liked she owned the place and started walking down our long hallway. You know what she was saying? “Happy! Happy! Happy! Happy!” I couldn’t believe it. I really didn’t think she would remember it, not after eight months and being so young and little when she left. She certainly seemed to remember it.


Hana LOVED being home. She had a great time. She loved being in the backyard checking out all the plants. She loved climbing things and going through all the toys she hasn’t seen in a while. Poppy loved being home with us too. Poppy also loved getting LOTS of treats from Hana. Unfortunately for me it was rather stressful. Hana was putting lots of things in her mouth. The house is quite dirty and dusty and Hana was touching everything and putting her fingers in her mouth. I found the rubber end of a door stopper and several dog treats in her mouth. Instead of getting much done, I was following Hana around wiping her hands.

The hated blue ball, kind of hoping she breaks it.

It was very clear that our house is NOT a place ready for an immune compromised person to spend more than a few hours. At least, not when they are a toddler and can’t comply with keeping their hands clean or at least out of their mouth.

We did have a great time being out in our neighborhood. But it did remind me how much dirtier our streets and sidewalks are compared to Palo Alto. It is definitely going to be another transition we will have to make when we get home. We walked through our neighborhood, got some ice cream and just checked out what’s new. Later we went to the BBQ place where we could sit outside with Poppy. It made me really sad to leave. I can’t wait to be back home! But for now, we wait and we make the best of what is.

Back in Palo Alto things continue to go well. Hana’s blood pressure is still high and I try not to worry too much about it because the doctor’s don’t seem to be too worried. Hana went to her first feeding therapy appointment with one of the speech therapists that she worked with in the hospital. It went really well. Hana has been putting food in her mouth and then holding it in her cheeks. She will do this for more than an hour. Then I have to fish it out. In feeding therapy we worked on getting her to chew smaller amounts and getting her to swallow. At home (oops, I mean the Ronald McDonald House) we have been continuing this rather laborious process but every day she seems to be making progress. Today she ate three baby pickles (she loves pickles), a string cheese stick and various crackers and pickle flavored popcorn (the latter two I mostly had to fish out of her mouth). She also will eat ice cream or frozen yogurt but seems to self limit. I honestly can’t believe she’s eating this much. Today she actually drank enough milk that I could reduce the volume of one of her tube feeds.

Feeding disorders or tube weaning is VERY stressful. Anyone and everyone I know that has had to deal with it will agree. I didn’t stress about it in the hospital, I decided to wait to tackle this after Hana’s transplant. Now I actually have hope!

Speaking of hope, I saw a sneak preview of the very nice letter written to Hana for the awesome check donated to Donate Life America. The word from Gina is that they aren’t used to getting sums of money because of a toddler or even a living recipient. 


Thank you for making this so special! One of these days I hope I have the opportunity to more specifically honor Hana’s donor. Sometimes those things don’t work out. Sometimes they do. I think of the donor family often. The loss they must feel. What it was like to go home and see their child’s things around. It’s been six weeks. How are they doing after six weeks? Would it give them some peace to know Hana is doing so well with their child’s heart? Or maybe it would make them feel even more sad. I would get it either way. I hope they can feel somehow that we honor their child and choice to donate life to Hana. Below I am reposting the lovingkindness meditation for Hana’s heart donor:

May the donor family be wrapped in a blanket of love and tenderness.
May they be held and rocked in their grief.
May their memories and stories be heard as sacred.

May their compassion and generosity be a lesson to us all.
May their child’s life force bless the world with each sunrise.

In time, may they find solace and meaning in their most loving gift.
In time, may their hearts be healed and at peace.

We’ve been getting out and about and Hana is climbing and talking and really making up for lost time. She is definitely closing the gap on her development!

Thank you everyone!

The Most Fun, Ever.

On Monday, Independence Day, we drove to Santa Cruz for the day. If you are on Facebook you might have seen the little video that Facebook automatically made from a few of the pictures on the beach. It does not even tell half the story. Let me tell you the rest of it. But first I just want to plant a seed in your head because its been growing in my mine – its about embracing every moment, there are best days and there are worst day and there are good days and there are bad days and for some of us, our “bad day” is someone else’s good day. But more on that later.

We had fun on Monday seeing the redwood trees and walking downtown Santa Cruz while Hana stuffed her mouth with chocolate covered biscuit that she wouldn’t swallow. Eventually half of it was spit out and the rest was swallowed. Then we went to a tiny little beach near Pleasure Point, about a block from a house that Paul and I rented when we got married in Santa Cruz (well technically Pescadero). To say Hana loved the ocean is an understatement. She was kind of scared and intrigued by the waves at first. Before we even got to the beach she kept going to the railing over the cliff that went down to the ocean. Then, after witnessing the waves for a few minutes she decided it was the greatest thing EVER. She clapped every time a wave crashed. She squealed with delight when the waves rushed over to us. I’ve never seen her so excited and happy. My parents got to witness a slice of this when we FaceTimed with them for a few minutes. (Too bad I didn’t really capture it on video.) She got pretty wet from her diaper on down but was very excited. When we left she kept running back to the stairs down to the sand because she did not want to leave. It was so heartwarming and joyful to witness! It was a good day, maybe even a best day!

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​Hana had another clinic visit on Tuesday. It went well. Things seem to be going very well. She doesn’t have another cath/biopsy until late July and then the next one is late August. Maybe after that we can move home. We shall see. In the meantime, we can do some day trips to our house in San Francisco! I am excited to get some things done around the house so that we can live there again! The other news from the clinic visit is that Hana’s blood pressure is still too high. We are working on meds to get that down, they increased her diltiazem again. She is continuing to wean off of the sildenafil and the prednisolone. I worry a bit that her appetite hasn’t taken off that much while on the steroid. I’ve heard that its supposed to and it did get better but has now plateaued.  I really want to get rid of this NG tube. I want Hana to be eating!

When you spend enough time living in a hospital and then living at a place like the Ronald McDonald House, especially at a place that serves very severe and complicated medical conditions, you get to hear a lot of stories. In some ways it is a comfort to feel “normal” amongst all these families that have experienced very tough times with their children. You see a kid wearing a mask or has a feeding tube or oxygen? No big deal. My kid’s been there. There is less explaining.
After hearing so many stories over the long months I realized that we have it easy. Now, many people reading this might think that’s crazy, that this has been tough and incredibly hard. It has, but its all perspective. Someone’s “bad day” might be my “good day” and my “bad day” may be someone else’s “good day”! I’ve also realized that this does not matter too much. Stress and suffering is still stress and suffering. I’m not saying that all stress and suffering is equal. Life threatening situations are indeed stressful. This has been hard and stressful for us. Paul and I laugh, actually laugh out loud, about the things we used to stress over. I think what I am trying to say is, lets be kind and gentle with one another because almost all of us are experiencing some kind of suffering or stress. Maybe I’m saying it because I haven’t always been kind or gentle. Or I could have done better. I could do better. Maybe I’m saying this because I’d like people to be kind and gentle with me. People have been kind and gentle with me, thank you.

This (hospital, Ronald McDonald House) is a very hard and inspiring place to be. There is both a lot of suffering and a lot of hope. There is a lot of heartache and joy. You see it on the faces of the kids. You see it on the faces of the parents. Thank you for reading and loving and praying and commenting and gifting and sharing it helps bring on the inspiration and hope and joy, and the good days! We need it!



Getting In A Groove

Things have been great! There is much happiness. Hana is really loving life, she’s so free. She does still have to put up with a lot, but she is such a trooper. She is talking like crazy. There are so many new words. She is drinking a lot too and experimenting with more foods. 

We are starting to get in a groove here at the RMH. A routine is taking shape. We have a flow. I still have a longing to be home, which is even stronger since the day is in sight. I can’t wait to have Poppy with us again. So, I think the longing is really to be back as a family doing day to day things in a permanent place. I say it like that because all of this has made us think about moving out of the city. We love our neighborhood in San Francisco, mostly because of all our great friends, but city life is making less sense for an immune compromised kid. Plus, we are really enjoying warm weather here in Palo Alto, it would be nice to live somewhere warm again. For those of you not aware, a warm day in San Francisco is maybe 70 degrees for just a few hours and then the fog rolls in and it’s 55 degrees. Occasionally it gets hot, but that’s freakish weather. If we move, it won’t be any time soon.


Hana has been so happy! She still has a hard time getting to sleep at night. She still has diarrhea and bloating and seems to have intestinal pain from medications. Unfortunately, I don’t think is going to change any time soon. She does have a lot of appointments, but that won’t be forever!  I did take her out jogging in the stroller and seemed to really enjoy it. She was very quiet and I discovered her mouth was loaded with cheese she hadn’t swallowed!

Thank you all for following this journey with us. All of you inspire us! We have received many letters and packages and notes and comments and they bring us joy. We feel loved and that makes all of this so much easier!

One person who has been putting forth a lot of love lately is Gina, the artist who painted the painting of Hana, The Gift. Her enthusiasm is inspiring to me. Her willingness to be so transparent is inspiring. I think that shows in her art work. I am so honored that she is making prints of her artwork to raise for Donate Life America in honor of Hana and her donor. I am in awe of her efforts, which makes me feel like I can afford to be a bit braver!


To help support the donate life effort, get your prints using the links below. They are only available until July 1st!

http://eugeniamancinihoran.bigcartel.com/product/donate-life-america-prints-4-hana
http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

Hana will thank you!

Biopsy Results

First, Sunday the 26th is the deadline to order The Gift (portrait of Hana) greeting cards. All the profit from the cards are going to be donated to Donate Life America, which raises awareness about the importance or organ donation (amongst other things). See the link below!

http://eugeniamancinihoran.bigcartel.com/product/fundraising-event-the-hana-card-pre-order-only-and-only-until-sunday-6-26
I could mention the cards first because the second news, Hana’s biopsy results, were the same as last time, zero rejection!!! This news came as we were waiting to be discharged from the short stay unit, which was delayed because Hana’s blood pressure was so high. They decided to double her dose of amlodipine, her blood pressure medication. This is the second time in a week they’ve doubled it. I guess as you taper off the steroids, blood pressure can go up for a while. Anyway, we are very happy with zero rejection! 

Hana has been very happy. She is talking a lot more, signing a lot more and almost running! She is really starting to climb which means all the wounds in her chest and abdomen must be feeling better. Her Berlin Heart cannula sites are hardly weeping at all. She still isunder sternal   precautions for another two weeks.

Today we took Hana on a road trip eight miles from the RMH. It may be pushing the boundaries a bit but it is only 20 minutes away. There was a special occasion at the golf course there at Shoreline. Bill, an instructor, was giving golf lessons all day long to raise money for the hospital! I think he was doing it from 5am to 9pm. By the time we got there in the morning he had already raised $5,000! I think it was a nice surprise for them when Hana showed up. Bill was first inspired to do this when he saw the Dateline show about the Bingham family. Two of their kids have had heart transplants (one of them has had a second transplant) and one of them was on the Berlin Heart for a very long time waiting. Their youngest is currently waiting for a transplant. After seeing that show, he met Paul a week later and discovered Hana was waiting for a heart so he decided it was a sign to do something!



Hana is enjoying the social activity at RMH. Today they celebrated patients and siblings birthdays. People made tons of food and drink and cake. We brought out the tricycle and she loved being pushed around with the big kids on bikes.


Remember, you can order prints of The Gift by Eugenia Mancini Horan, as well as some other beautiful prints by her, for one more week. The majority of the proceeds will go to Donate Life!

http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago


http://eugeniamancinihoran.bigcartel.com/product/donate-life-america-prints-4-hana
Thank you to everyone! We’ve received so much support we are so thankful! You have kept us well stocked and fed and most importantly you have kept our spirits up and reminded us how much we need each other and what a difference we can all make, no matter how big or small.

Four Weeks with a new heart!

Welcome To The Short Stay Unit

We’ve been spoiled rotten. In the past, I mean, not now. I’m laying in a hospital bed. The last time I was in a hospital bed, Hana was a newborn. It’s 10:30 and the movie Frozen is playing on the other side of the curtain in our tiny shared room in the short stay unit at the hospital. The mom on the other side is talking on the phone. The door to the room is open. The lights are dimmed a bit. Monitors are beeping and IV alarms are sounding. 

They let Hana sleep in a hospital bed instead of a crib. It wasn’t my idea or request. Before I knew it they were ordering a bed instead of a crib like it were my idea so that I could lie in bed with Hana. It sounds like a lovely idea to me – cuddled up asleep next to your baby, when you couldn’t do it for months. But Hana is not crazy about the arrangement. She kept pushing me away. She likes her space, I guess. She is finally asleep.

Hopefully the 12-hour run of IVIG therapy goes well! We need more time out of the hospital. We got up really early this morning for the cath lab appointment. We had to be at the hospital at 6:30am. It went smoothly, her heart pressures are still high but they are coming down. The will get her biopsy results tomorrow. 

In more exciting news, the amazing Eugenia Mancini Horan is offering six more of her prints for a limited time where half the proceeds will be donated to Donate Life America. Check out the link to get a better look!


http://eugeniamancinihoran.bigcartel.com/product/donate-life-america-prints-4-hana
You can still support Donate Life America by ordering The Gift cards until June 26th and prints until July 1st.


http://eugeniamancinihoran.bigcartel.com/product/fundraising-event-the-hana-card-pre-order-only-and-only-until-sunday-6-26
http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago
Show your support for Donate Life!

Giggly Hana agter her versed.
Suiting up to go into the Cath Lab