A Secret Garden

Today we had a day free of any appointments so I decided it is time to embrace “not busy”. It’s been so busy for so long, just trying to keep our heads above water. Even before being hospitalized I was trying to cram as much fun into our day to make up for all the appointments and being restrained due to tube feeding and all the times a big vomit would ruin our plans. Also, I wanted to make Hana’s life good and full of experiences just in case she didn’t get to have many of them. Seize the day, I suppose. Maybe part of me knew a time would come when things would be limited, even very limited.  Now we are relatively free again yet limited by exposure. We have all this time and only a few ways to spend it. It actually feels great! Plus I think Hana has a lot of catching up to do playing outside!

After breakfast Hana and I walked to the park. She was bored after an hour so I thought maybe she’d enjoy preschool at the hospital, although being in the hospital is not too appealing to me. Besides it felt like we spent all day there the day before. We started walking, meandering through the neighborhoods when we came upon an interesting looking place called the Arts Alliance Guild. I was even more intrigued when I saw it benefited the hospital.

It turned out to be a lovely Spanish style collection of buildings with courtyards and paths and fountains and gardens. Hana enjoyed running around there more than the playground! There were very few people there and it seemed tucked away in a sleepy neighborhood so that it felt like our own secret garden.

I wish I could say the rest of the day was as nice. After the afternoon nap I got the brilliant idea to see if Hana would be interested in a Peanut butter chocolate smoothie from Jamba Juice. I haven’t had one of these drinks in at least ten years. We got the smallest size and I poured some in a straw cup for Hana. She started slurping it down and I was delighted. 

Then she sat up straight in her stroller and would not rest her back while we walked downtown. She started coughing. Then I got worried she was having a reaction to the peanut butter which she’s never had it and Paul had a peanut allergy. I decided I was going to head back maybe even right to the hospital. I checked her tongue and her breathing and she had no rash anywhere. But she seemed more and more bothered. Then I decided to call Stanford and while I was on the phone with them, Hana threw up.

So, no more peanut butter and no more PB chocolate love smoothies! We ended up going back to the Ronald McDonald House and by the time we got there Hana was back to her normal self. 


Yesterday was a busy day at the hospital with bloodwork, echocardiogram, clinic appointment. Hana’s heart looks great. Her tacrolimus levels are still a little high so we decreased her dose. Her blood pressure is still too high so we went up on those meds. They started to wean the sildenafil (Viagra) who knew it was a medicine used to treat pulmonary hypertension!? Hana got her Berlin cannula site sutures removed! 

Running after a toddler can be exhausting, especially when you have to keep her from touching too much or putting her fingers in her mouth. It’s almost an impossible task unless you keep them restrained all the time.

Remember that only a couple days are left to support Donate Life America and honoring Hana and her donor by purchasing a print from Eugenia Mancini Horan. Prints are available here:

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

Here’s one of Hana yesterday as we waited for the surgical team member to come and take out Hana’s sutures.

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

A Long Day Coming Up

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!

To order the print, only available until July 1st: http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

To order a pack of five 5×7 greeting cards, only available June 26th: http://eugeniamancinihoran.bigcartel.com/product/fundraising-event-the-hana-card-pre-order-only-and-only-until-sunday-6-26


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.

Blood Pressure

This will be quick because it’s been a late night. Hana’s blood pressure machine, a fancy loaner from the hospital, was measuring her blood pressure very high, repeatedly. High, like 143/99 which is very high for a kid Hana’s age. At first, it was only giving me one number, which I assumed was the systolic pressure (top number). Then we started getting the high readings. I turned the machine on and off, switched the cuff from leg to leg and arm to arm. I swear when it was measuring on her arm that her hand was turning purple. So, then I had to call the on-call cardiology fellow at the hospital and wait. When I rechecked it about 45 minutes later, it was giving a blood pressure that I would expect. But all of this made for a late night of staying up and waiting.

Hana is doing great. We had a clinic appointment today with her primary heart transplant cardiologist. They decided to double her dose of blood pressure medication (and this is before all the crazy blood pressure readings) because her blood pressure has been creeping up a bit. The cardiologist also explained that he had been studying her donor’s antibodies for closely and he rates the match with Hana as a 3 out of 10. This sounds really low but he said most patients get a 0 out of 10 or maybe just a 1. I didn’t ask a lot of questions about this because it sounded good to me and I think even the other heart transplant cardiologists don’t quite fully understand this subject of matching and antibodies at this very specific detailed level.

If you would like to order Hana cards otherwise known as The Gift, they are now available! 

http://eugeniamancinihoran.bigcartel.com/product/fundraising-event-the-hana-card-pre-order-only-and-only-until-sunday-6-26

They are only available until June 26th! 

The regular print is still available:

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

And the print of Let Go still has a couple of prints available:

http://eugeniamancinihoran.bigcartel.com/product/let-go-new-large-sized-limited-edition-of-10-for-hana

Support donating life by ordering a print or some cards, the majority of the price is going to Donate Life America!

​​

Happy

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!!!

See the links for these amazing prints below.

The Gift

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

http://eugeniamancinihoran.bigcartel.com/product/let-go-new-large-sized-limited-edition-of-10-for-hana