The Gift Of Hana

Posted on by katmeander

This story begins several years ago when I was visiting one of my sisters in Sackets Harbor, NY (a lovely, idyllic little town on a bay of Lake Ontario). We wandered into the tiny art gallery and I saw a painting I loved, called “Let Go“. I couldn’t afford the painting but I bought a print that I took home and saved, tucked away. I saved it to hang in Hana’s room, when I knew we were having a girl. That’s where it is now. Before I hung it in Hana’s room I decided to look up the artist to see what she was up to lately and I started following her new work.

When Hana was in the hospital, the artist, Eugenia Mancini Horan, was selling a watercolor that I liked where the creature was blowing bubbles and it seemed fitting for Hana’s hospital room. To my surprise, when the watercolor came, so did a few new prints from the artist which I was happy to put on the walls for Hana. It was then that the artist, Gina, started following Hana’s story.

Then, Gina sent me a photo of a new painting that was emerging, it was a painting of Hana. When I showed it to Hana, she immediately said, “Hana!” 

Now, the painting, The Gift is finished! As a tribute to Hana, prints are available for a limited time with a portion of the proceeds going to Donate Life America. 

Here are Gina’s own words:

“The story of my painting – The Gift. It is my painted tribute to Hana Yago. I painted it before her transplant, painted it as I hoped to see her one day… No more tubes, no Berlin Heart, just a little girl with the eyes of an old soul that in her less than 2 years on earth has become to so many people known and unknown to her an inspirational sign of hope, tenacity, and stubborn determination to live. I know I am by far not the only one that has been captured and captivated by her story, that was effected by her lows – joyously celebrated the highs – no day more so than when Hana got her heart! It was very shortly after I finished the painting that her heart arrived, and it has been such an emotional journey watching the painting become more than hope – but now – reality!

And as much as in my head I like to think that Hana overcame her obstacles on her own, for I do believe if anyone were capable – it would be Hana! …I realize that there were so many factors in play to get her on the road to home and wellness that she is on now. Countless doctors, nurses, the unwavering and relentless support of her family, those that created the science and medicine that allowed her to live before getting her heart and now after… and one child, one incredible donor, that gave her a gift. A heart. Hope. A future. And that gift can not ever truly be repaid. 

But I would like to try in some way. To honor Hana’s story, and to pay tribute to the child whose heart made this day possible. I will be selling a limited edition of Giclee prints of Hana’s painting, and the proceeds will be given as a gift donation to an organization/organizations that Kathleen is still working to narrow down and will be announced this weekend (talk about limitless choices!!). Donations in Hana’s honor, paying tribute to her joy of life that is passed on to all of us, to help others in similar stories that have not gotten their happy ending, or is it happy beginning… Yet. Each person that contributes I will list and print out for Hana to have, so that one day Hana can see just how many people her life has touched. And hopefully the money will help to save others we aren’t aware of, as each and every person in need of an organ is someone’s ‘Hana.’

I will be selling the prints by pre-order only, so as to be able to donate as much as possible. (With a pre-order system I will know how exactly much paper to order/mailers/ink/etc.) Each print will be 11″x14″, printed on heavy 300gsm archival cotton rag paper with archival inks and protected in a sealed poly bag. They will be signed, numbered and dated, and the edition will close at the end of the ordering period, and no more of these prints will be made. As a bonus, I will do a small limited edition of 25 13″x19″ prints on 300gsm luster paper. I call it the Elite Edition, for those who might want a bit more of Hana!

So, if like me, you’ve been touched by Hana’s story, now is the time to do something to give back, and let her know… and to thank her for touching our hearts on her journey to get her own. I mean, if ever we needed to celebrate a truly awesome joyous story in the world – that time is now!”

Prints can be purchased here, until July 1st: http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

Also, if you are on Facebook and want to follow this event you can follow this link: https://www.facebook.com/events/969128839870400/?ti=icl

We are so touched by all of this. It has been an amazing, incredible journey.

In other news, Hana continues to do well. She loves being outside more than anything (she always did, even as a little baby). She likes watching the big kids play! She had speech therapy at the outpatient clinic, which went very well. She has been enjoying time with my parents who are getting ready to leave over the next couple of days. She is starting to nibble on food more often! She seems very happy! (Thank you to whoever sent the new mask!)


20 days with a new heart!

The Gift

First Clinic Visit

Posted on by katmeander

Today, Hana had her first clinic visit since being discharged. Other than the appointment being right during Hana’s nap, it went very well. A few minor adjustments were made. We discussed Hana’s diarrhea and bloating which is almost definitely due to her medications. We discussed her high blood pressure in the morning (but then tonight it was also high). But things are looking really good. 

Hana had an echocardiogram where they saw the walls of her heart are thickening from the steroid she is on, but it seems usual for the young kids. Hana got the staples removed from her chest- she dealt with it like a champ, I couldn’t believe how calm (some crying too, of course ) she was. They examined her Berlin Heart cannula sites and redressed them.

Hana dealt with everything so well, especially for having no nap today! Her next clinic appointment is on Tuesday and won’t be as long. Things are really starting to fall into a routine. We’ll see how well that goes next week when my mom and dad go back home and Hana starts to have outpatient speech, PT and OT appointments.

It’s been nice having a relatively slow week to catch up on sleep! And now we have the Summer Scamper to look forward to on Sunday!

Another Great Day

Posted on by katmeander

Things are pretty good. There was more bloodwork early this morning and now Hana cries because now she knows what is coming, but she doesn’t put up a fight, she is such a trooper. She amazes me. 

Since we had to go back to the hospital we decided to visit 3 West to say hello to anyone that was around. Hana wasn’t having it. She kept pointing to the exit and saying “Go!” I don’t blame her, but I wish she could understand that we aren’t staying. Hana did go to hospital preschool where Jeff the guitarist played. She seemed to enjoy it. She might as well enjoy it now since she won’t get to go to regular preschool – it’s just too risky for an immune compromised kid. 

Sleep and napping has gotten much better – she might even get on a normal kid routine.

Today Southwest Airlines grilled and provided dinner for the families at the Ronald McDonald House. It was grilled chicken and hot dogs and all kinds of side dishes. I have to say that after seven months in the hospital it is really nice to have someone make you dinner AND to eat it in a real dining environment. It doesn’t feel like a cafeteria or the hospital. It’s nice to have people do things for you – to take care of you in this way. It was very welcome and comforting.

On that note, people have asked what they can do – we can certainly use meals – although I can do some cooking now! It’s a bit tricky since it is harder to keep an eye on Hana in such a big kitchen that is not childproofed and we still need to be a little careful since she is still healing. Hana could use some new masks (vogmask N99 CV, small) and sun protective clothing. 

We can get mail now addressed in the following way:

Ronald McDonald House at Stanford
Hana Yago
510 Sand Hill Road
Palo Alto, CA 94304

It must be addressed to Hana!

For those that can and want to visit, I think we will be ready for visitors next week! We would love to visit as long as all visitors are in perfect health – no runny noses, sniffles or allergies. Also, you must be fully vaccinated (or current according to your doctor or pediatrician) this includes the pertussis/whooping cough vaccine. Lastly and most importantly, you must be willing to wash hands or use hand sanitizer thoroughly and rub vigorously for 15 seconds. When the say “Clean Hands Save Lives” they are talking about kids like Hana! 

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Ronald McDonald House

Posted on by katmeander

Today was our first day with nothing medical to do. All that means is we didn’t have to go to the hospital for anything. We will have to go on Wednesday and Thursday. I decided to let Hana sleep in a little. We finally got a good night’s sleep – there was a short period where she was tossing and turning and crying out but she was fine. We are still doing middle of the night tube feeds, so I have to get up to start and stop that but maybe my body is just so used to that by now that it’s no big deal.

Today after a late breakfast we walked to a playground. The playground at the Ronald McDonald House is off limits to Hana during summer camp and she is too young for camp so for most of the day we will have to go somewhere else for a playground. Anyway, Hana loved going to the playground! She went of the swings and the sliding board. She like watching the other kids. It wasn’t too crowded where I felt she should wear her mask and we used lots of hand sanitizer. We did leave when they came to spread new mulch.

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Hana took a real nap today! She loves exploring the Ronald McDonald House (RMH). The house is brand new. They just started moving families from the old house (next door) over the week before we got there. I’m sure we are the first family to occupy our room. Everything feels new and clean.

You get to meet a lot of people here. Often, you see the same people – families I’ve seen over and over again over the last several months. It’s usually because their child has had an organ transplant or maybe cancer or maybe a baby in the NICU. People come from all over. I met two families from Hawaii. One woman with her son came all the way from Poland. She just got here and looked quite lonely. She was speaking Polish with another woman that I’ve seen around the hospital with her son for months. 

We share a community kitchen, dining room and living rooms. We have our own assigned pantry, refrigerator space and freezer space. It’s so much better than the hospital! They have gas stoves and ovens, toasters, cooking equipment and microwaves. It’s nice having something other than a tiny microwave to share! There is also shared pantry items and refrigerated food. Some miscellaneous fresh fruit and vegetables appear too. Hana is enjoying opening and closing every drawer and cabinet.

The living space does not seem to get utilized too much. There are playrooms, by age, that seem to be locked up most of the time. In fact, there seems to be a lot of great space that is locked up most of the time. The back patio/yard is nice too – they have tables and chairs and a few very nice grills.

Our room is nice. All the rooms are uniquely and were designed by a bunch of fancy design firms. The room is kind of small for all we need it to do. We have a small refrigerator for medications and then a freezer for storing breast milk. These are only available upon request. We brought in one of our storage carts from home to store medical supplies and to serve as a workstation for drawing up medications. We have a queen sized bed with a trundle bed underneath. They both have Temperpedic mattresses. Very comfortable. My mom’s been sleeping on the trundle. Hana is in her Pack N Play. We brought the toybox because it also serves as a bench. There is “closet area” but no drawers. This is where we park the stroller. I don’t think the rooms were designed to hang out in. They are also strict about no food or drinks in the rooms. It’s okay for now, but this newfound privacy feels kind of limited.

We feel very fortunate. It’s 200 square feet all to ourselves.

The location of the RMH is great. It’s a ten minute walk to the hospital, a fifteen minute walk to downtown and its across from the Stanford Shopping Center where I probably wouldn’t buy much but it’s a very nice place to stroll.

First Day Out

Posted on by katmeander

Well, Hana has been out of the hospital now for a full day! She has been very, very happy – exploring and running around. Sleep is still a scarce commodity. It did not go well last night – she woke for an hour or so and then we had to wake her up early to take her back to the hospital for bloodwork. She did take two one-hour naps. Tonight she got to bed a little earlier at 10:45!

Her bloodwork experience went well and she was fine with putting her mask back on at the hospital. Her tacrolimus levels were too low again so they increased her dose and she will get bloodwork again on Wednesday.

We walked to downtown Palo Alto and it was lovely. I had to get some things at Walgreens. The weather was great. Hana napped in the stroller, she was so tired. It was so nice to be outside! If only there could be more sleep happening…

Speaking of sleep, that’s what I’m going to do now. Things are falling into place and we are very elated to be out of the hospital!

Discharged 

Posted on by katmeander

Today Hana was discharged from the hospital. We walked out the front of the hospital. We walked as far outside the hospital as Hana has been and then we just kept going (by then she was riding in the stroller). We walked all the way to the Ronald McDonald House, which is our new home. As you can probably imagine, it was loaded with emotion – happiness, gratitude, joy but also some sadness to be leaving the amazing team of people who had come to be like neighbors, co-workers, friends and family! There has also been a little stress and fear with the transition, like getting all the new medications exactly right and getting the room at the Ronald McDonald House ready and organized – it’s smaller than Hana’s hospital room and we actually need to store a lot more things in it! Hana has never seemed happier and more like a normal toddler! But she has also had a tough time transitioning to sleeping in a strange place and in a Pack ‘N Play and it was almost 11:30 before she fell asleep for the night. Because of that I’ll share more tomorrow! After 205 and a half days in the hospital we are ready to start a new adventure!

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Zero Rejection

Posted on by katmeander

The big news today was that Hana’s first biopsy results came back with zero rejection! I hope this is the result she gets for the rest of her biopsies. The big long term problem is actually with the coronary arteries of the heart and is often why a retransplant is necessary. Much of this is not yet well understood so in the meantime Paul and I are going to be making some diet changes. I think we’ve always done pretty well but now we are going to do better. 

The other news today was the result of Hana’s tacrolimus (Prograf, her most important anti-rejection medication) blood test which was even lower than yesterday. This is not good. Her levels need to be within the goal range in order for her to be discharged from the hospital. They keep going up on the dose but her levels go down. This actually means that her kidneys are doing a better and better job – so that is a good thing. So, they have gone up a tiny bit again on the dose and will test again tomorrow. It’s really important to get this right! 

I am impatient to leave the hospital mostly because Hana must get breathing treatments twice a day while she is inpatient. This is because of the construction around the hospital (for the new hospital) and the spores in the air are very dangerous for transplant patients. The breathing treatment involves holding her down in bed and forcing a mask over her face like you are suffocating her so that she breathes in the yellow vapors of amphotericin. She fights and cries and sputters and gags. It’s awful. Of course, she is too young to understand how she is making it worse. 

I really hope she can be discharged Sunday but I’m not too optimistic.

Hana is getting her IVIG therapy today. They are running it over 18 hours instead of 24 so we’ll see how she handles it. Before, when they ran it faster she spiked a fever and everyone got worried so we don’t want that to happen again. Since Hana will have to get IVIG therapy as an outpatient treatment, if it can be done in less than 24 hours then she can go to the short stay unit instead of being admitted to the hospital every time. Hopefully it goes well.

Other than all that we are just waiting around. Hana has started to eat a little. She is definitely showing more interest in food. It makes me want to cry tears of joy. I know a lot of parents stress about their young children not eating very much. Hana has never been an eater. I don’t think she’s ever eaten more than a tablespoon of food (and that was a very rare occasion). I hope she is getting ready to turn a corner!

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205 days in the hospital, 14 days with a new heart!

Cath Lab Results 

Posted on by katmeander

Today was very busy. It was just one thing after another. Hana had a better but still pretty terrible night’s sleep. I really think it’s the steroids. I’m running on fumes. Hana must be too!

The big thing today was Hana’s first cardiac catheterization. Everyone has been surprised to learn this, but before, the consensus was that it was too risky of a procedure for her old heart. But here we are with a new heart. We took Hana down where they gave her IV versed. Then they walked us to the cath lab which is on the adult side of the hospital. Hana was getting a little droopy and drooling a little in my arms. There we said good bye to Paul and I took her in and laid her on the table where they gave her propofol and I stayed with her until she was asleep. For this procedure they thread a small device into a vein in her groin area that goes to her heart. They measure the pressures of the heart and take four samples for the biopsy.

30 minutes later she was done. The doctor came out and explained the results. The pressures in the right side are higher than a normal, healthy heart (10, versus 6-8). The pressure on the left side of her heart is 20 (they want 8-10). This means that her heart is stiff. We were disappointed until one of the transplant doctors came to talk to us and said the results are what they expected. Hana’s new heart spent 5.5 hours on ice, which is a long time and it may take a while for it to adjust. So, we feel a little better. We will get biopsy results around Friday afternoon.

The other big thing we did today was check into the Ronald McDonald House. It is impressive and beautiful and brand new. I’ll talk more about this later. It feels crazy to be thinking about leaving! Now, we wait for biopsy results. We also have to wait for Hana’s Prograf levels to become stable and then we can e discharged. This could delay us a day or so. Hopefully not!

Okay, so tired, must sleep!

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Rescheduled 

Posted on by katmeander

Last night was one of the worst night’s sleep in months. Hana was tossing and turning and crying out. I finally elevated her in the crib more with some pillows and she slept soundly for a couple of hours, which is when I finally was able to get sleep too! Today I felt like I was in a daze! 

Around 10:15 they told us Hana’s cath lab/biopsy had been canceled because a child in the ICU needed that spot urgently. I was very disappointed but that is just how things go in the hospital. I’m sure a few times Hana was the one bumping other kids scheduled procedures because she needed something more urgently than they did. Anyway this kind of threw everything out of whack for the day. Eventually, they rescheduled Hana’s cath lab/biopsy for late Friday morning. This will delay her discharge by one day. Now we are looking at Sunday, if everything looks good.

We kind of feel like we are just twiddling our thumbs and waiting. I can’t believe I’m impatient now after all the waiting we’ve done, but the end is so close (at least, I hope). I picked up Hana’s meds at the Kaiser pharmacy and reviewed them again with the transplant pharmacist. The car seat was delivered. We met with the Infectious Disease doctors to go over a few things. I haven’t heard from the Ronald McDonald House yet about moving in. This makes me a little nervous because I feel like there is still a bunch to prepare before we can be ready for life outside the hospital!

Hana has been cranky with GI upset. It’s probably medications causing both. She would only nap while my mom held her and for less than an hour (while I made the trek to the pharmacy). This child needs more sleep! We wheeled her around in the wagon a lot because I was honestly too tired to try to do much else! She did do some smiling today. It’s the first time I’m positive she smiled!

Tomorrow – cath lab/biopsy. Saturday – IVIG therapy. Sunday – discharge from the hospital to the Ronald McDonald House!

Getting Ready

Posted on by katmeander

We are starting to prepare for discharge on Saturday. It makes me a little nervous partly because I know how much work doing all of Hana’s care at home can be (and we won’t even be at home!) and also because I just want tomorrow’s cath lab/biopsy results to be such so that she actually can be discharged. We need healthy pressures in her heart and no signs of rejection!
Things are in motion. A feeding pump and medical supplies are being delivered on Friday. Thursday I have to go to Kaiser to pick up medications. The Ronald McDonald House has been asked to find room for us starting on Friday. We still need the car seat to be delivered and then get it installed! I need to buy gloves and hand sanitizer and diapers and wipes. We need to bring things from home – a stroller, pack ‘n play and a diaper bag (I have no idea where it is!)

At least this is not our first big discharge. The first time, after we discovered Hana’s heart condition, was a shock. It was learning about medications and medical supplies and tube feedings and cleaning up lots of vomit and being worried that her heart was not well enough for her to be out of the hospital and trying to cope with it all on very little sleep after weeks on intense stress. This should be easy compared to that! I hope it is! Now Hana has a new, beautiful, healthy heart. It is miraculous.

Hana has been very cranky. It’s probably her steroids making her this way. She went to preschool and got to see Jeff the guitarist and her nurse took us to the adult hospital for the music concert. It was classical music and it was the first time I could dance and twirl around with Hana in my arms without getting wrapped up in a driveline. I could just carry Hana around with both arms and we could move freely about. It was incredible. We could go up and down stairs and we could stay outside as long as we wanted. We took her to the cafeteria while we got coffee. But despite all of these freedoms, Hana is often cranky. She will still only nap if I hold her which today was for two hours but if I tried to put her down she woke up. She needed the sleep because she slept terribly the night before.

Tomorrow is the next big day! The catheterization is where they send a catheter up her vein in her groin area to the right side of the heart to measure the pressures. Then they go into the heart and take a handful of biopsies to check for rejection. It will happen in the afternoon (Thursday) and take a couple of hours. We get biopsy results on Friday afternoon. 

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202 days in the hospital, 11 days with a new heart.