Tomorrow, Thursday, is going to be a long day. Hana has her cath/biopsy in the morning. Hopefully we will get to leave around lunchtime. Then we have to go back to the hospital in the evening for her overnight IVIG treatment. I am preparing for a lot of boredom and crankiness.
It’s the first time we will be taking Hana to the hospital for these treatments as an outpatient. I hope I remember to pack everything!
Today has been another great day. Hana is talking and happy. She still runs around and says, “Happy! Happy!” I wish I were more like her. After all she’s been through and all she has to face, she can still be happy and she can share it without hesitation. Maybe I’ll experiment with walking around and saying “I’m happy!” when I feel it.
But it’s hard sometimes. I try not to worry about the results from tomorrow’s catheterization and biopsy. I shouldn’t worry because there is nothing to worry about… Not until there is actually something to worry about and we don’t know when that will be. Maybe never. If I can really put that to rest than what else is left to feel? Happy!
If you would like to support saving lives with organ donation, please consider purchasing a print or cards of The Gift, a portrait of Hana by Eugenia Mancini Horan. The majority of proceeds are going to Donate Life America!
From our room at the Ronald McDonald House, we can watch the moon rise at night. Lately it’s been fantastic. Hana loves looking at it too (she’s been getting to bed way too late)!
Thank you for all the great gifts, packages, food, visits and decorations! It’s been great and very heartwarming.
Hana has had an explosion of new words, both spoken and using American Sign Language. Some things she only signs (like poopy diaper, it’s probably good she isn’t mentioning that out loud) and some things she only speaks. Her new favorite spoken word is “happy”! Of course, she is also using it in the proper context – she’s been really happy!
Today was my first day on my own – my mom left to fly back home very early this morning and Paul is trying to get back to the routine of working from the office every day. So far, so good! We walked to physical therapy (certainly there were some eyebrows raised at this, but it’s only one mile away) and the route I took was quite nice and peaceful. In the afternoon after her nap, Hana and I cleaned our room at the Ronald McDonald House (it’s been a long time since I’ve cleaned a bathroom!), we did a load of laundry and we washed a bucket of used syringes (I don’t miss washing syringes). If you were wondering NONE of the syringes we use have needles.
It was nice to do some normal things as we start to think about going back home again some day.
Once again, I’ll mention that the amazing Gina is offering prints of her paintings, The Gift and 10 prints of Let Go. The majority of the price of these prints are going to support Donate Life America which is committed to getting people registered and raising awareness about the importance of organ donation. In addition to the prints, Gina is going to offer 5×7 greeting cards of The Gift for $5 each, again with some portion going to Donate Life. If you are interested, please contact me or mention it in the comments with an email address where you can be contacted. Support a heart!!!
Today (Sunday) was the Summer Scamper and it was great! I heard that 3,500 participants raised about $550,000 for the hospital where Hana is treated. I finished the 10K at in 57 minutes and I felt good! My only regret is that I did not do enough for our Hana’s Heart team, next year we will get team shirts, at the very least! I will admit that I cried a little when we started running – sometimes it all just feels so big, all of this, this way of life, the huge depth of emotion through all of this.
Some of the Scamper team!
Hana had a good time too. We generally kept her away from the crowds and when we moved towards more people she wore her mask. She seemed to really enjoy watching the kids race and afterwards enjoyed running on the track! We also seemed to have constant hand sanitizing going on, the poor kid had hands sticky with so much sanitizer!
Thank you to Suzanne, Delphi, Travers, Megan and Susan for being part of our team! I hope we can have even more fun next year! Thank you to my mom and Paul, especially Paul on Father’s Day, for helping us get through the morning. Thank you to everyone who donated, you are awesome!
On the topic of donation, I’d like to remind you again that Eugenia Mancini Horan is offering prints of her painting, The Gift, until July 1st, with 50% of the proceeds going to Donate Life America in honor of Hana and her donor.
Tomorrow (Sunday, Father’s Day) is the Summer Scamper race to benefit Lucile Packard Chikdren’s Hospital at Stanford. I will be running the 10K race! I haven’t had a chance to do much running over the last several weeks, so I hope I don’t hurt too much! If you’d like, I think you can still donate. Thank you to everyone who has donated! I hope we have some great pictures to share tomorrow!
Today has been a great day. We were all sad to see my dad go, but he has to get back home and get things taken care of. I’m kind of feeling the same way about our home in San Francisco. It’s been a dumping ground for things coming from the hospital – things she’s outgrown or are no longer useful or we just don’t have the room. Plus it’s kind of dusty and dirty and disheveled! Now, we need to start thinking about getting things ready for Hana to live there again in a couple of months!
Hana did a lot of walking and climbing and talking today! She also ate more than I’ve ever seen her eat – ice cream and cheese and bread. It’s not very nutritious but we have to start somewhere! Things at the Ronald McDonald House are going really well and we are enjoying the community feeling. Hana really likes watching all the big kids.
Remember, prints of The Gift are available to order!
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!”
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!)
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!
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.
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.
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!
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!
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!
205 days in the hospital, 14 days with a new heart!
Hana's Heart 