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