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.

 

 

Another Zero Rejection

It’s hard to be here – the hospital or Ronald McDonald House (RMH) for so long. The hardest thing is getting to know so many families with so many challenging, sad or scary stories. It wreaks havoc on my heart. Then, when I take Hana’s blood pressure, it is high and I start to worry and my fear and mind go crazy about what might happen because I heard it, seen it, lived it. Then I remind myself of the truth. She is sitting on the bed and is cute and happy and I love her. That’s all I know right now, so go with that and enjoy it.

I meet kids, like Zach, who is a sweet twelve-year old and is on oxygen and is waiting for lungs. A year ago he was healthy until a rare infection left his lungs trashed, only 18% left. Before that he’d already had a rough life by normal standards, but is now in the loving care of his grandparents. The survival rate for a lung transplant is 50%. After five years it drops to 35%. We don’t talk about it explicitly, but I can see the sadness and worry on the face of Jay, his thick-Boston accent-Patriots-loving grandfather who stays here with him. (They live in Tucson.) It’s overwhelming, these stories. But I’m honored to know both Zach and Jay. They have touched my life and Hana loves to say hi to Jay and give him high-fives.

It’s been an emotional week, for some reasons I’ve mentioned in previous posts. We went to our house on both Saturday and Sunday. Leaving to come back to the RMH was really hard. I just want to be home. I forgot how much better being at home is than being in the hospital or RMH. I think I made myself forget so it wouldn’t feel as hard to be away. But being home and seeing Poppy and friends was so great I wanted to walk around saying, “Happy! Happy! Happy!” To think we might be able to live at home in a few weeks is overwhelming. Maybe the last eight months has taken a bigger toll on me than I’ve thought, maybe I’ve just been in survival mode.

Friends in our neighborhood have been helping us (maybe it’s more like we are helping them) get our house ready to be lived in again and now with an immune suppressed toddler. They have been amazing. Progress is being made on the expired foods, dust and dirt, piles of stuff being dropped everywhere. Hana has accumulated so much stuff that made hospital life more bearable but now it fills half her bedroom! There are a lot of small things that need maintenance too. I feel confident that it will all work out just fine.

Hana has been great! Her hospitalization and discharge last week confused some communication and they forgot to tell me her biopsy results. Another zero rejection, which is great! Today her Prograf level was low after bloodwork this morning so it seems to be all over the map. I think they are considering the possibility that her new antibiotic is affecting her levels. Besides medical stuff, Hana is loving going to the beach, being outside, seeing Poppy, toddling around the house and outside and seeing friends. She sure does love social activity. That is going to be much harder as we head into the flu season. I think we are just going to adapt to playing in the rain.

This week we have more free time. Today Hana had bloodwork and then I took her to preschool. While she napped, I sat out in the hallway with a baby monitor and I started to catch up on the mountain of paperwork, bills, bookkeeping, phone calls and emails that are in my backlog. It’s a bit daunting and I’m afraid I will miss something crucial. Then I did chores and Hana played, kind of like how it will be back at home! Hopefully we will get to swim this week and go back to Magical Bridge playground. Tomorrow we visit home again! On Friday we should find out when we can move back home (as long as the painters are done and the scaffolding is down).

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Back In The Wild

It was very hard to get to sleep last night because I kept thinking of Sebastian and his parents. I hope I can turn all my sadness into loving vibes for his mom. 

Here is the loving kindness meditation again:

May Sebastian’s 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 child’s life force bless the world with each sunrise.
In time, may their hearts be healed and at peace.

Sebastian’s family is from Eugene, Oregon. If you’d like to make a contribution to a fund set up for his memorial please visit this site:

http://www.plumfund.com/memorial-fund/Sebastian

Another mom pointed out in her blog post, that it is a reminder to what donor families go through when they lose their children. It has made their grief feel so much more real for me. I am so grateful to them, for their gift amidst their devastating pain.

In more sad news Destiny died yesterday as well. She needed a bone marrow transplant but there was no match for her in the registry. I mentioned her in the People Can Be Awesome post. Please consider registering to be a bone marrow donor! I am so sad for her family. It has been somber here. There are too many kids we know back in the hospital. This is part of the world we live in here.

So here’s the good news! Hana was discharged today. Everything is back to normal and they are calling it a reaction to anesthesia, which seems to be a very mysterious corner of medicine, especially in children. Dr. Rosenthal, a world class doctor who may the very best in his field, admitted her didn’t know much or understand post anesthesia fevers in children and asked the resident if he knew more (apparently the resident has done some research on the subject). But he didn’t really have answers, just statistics.

It was great to get out of there! Hana was so bored and going stir crazy to leave (last night she started crying when we went into the empty hospital room and realized we were staying overnight in the hospital). Since Hana was seen by the team during rounds we do not have to go to her clinic appointment tomorrow! It was also nice to discuss some of her care with the full team. They made some medication adjustments, adding Bactrim (trimethoprim/sulfamethoxazole, which is the longest drug name I might need to remember) and eliminating Iron! Bactrim is an antibiotic that Hana needs to be on while on the steroid prednisolone for a prolonged time. It replaces pentamidine, which she got once in the hospital and to which she had an allergic reaction. I was also able to discuss weaning Hana from her tube feeds! This is music to my ears! They finally think it is time to try! I am so excited!

Ready to go!

In other fun news, on Tuesday we went to the beach and met my friend Alyx and her son Aidan. It was great fun! Hana loved it!

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Getting Admitted

I wanted to call this post heartsick, because that’s how I feel. But this is about Hana’s heart, not mine. Hana seems back to normal. She was asking for milk and food! Her fever seems mostly gone but her respiration rate is intermittently high in the 70s or 80s. They decided to admit her to 3 West, where we stayed for so many months (in the first room she had there after her Berlin Heart). They want to observe her for a while with the fast respiration rate. Her ultrasound and chest X-ray all came back okay.


Hopefully it will just be an overnight stay and we will get to go back to RMH soon.

I am heartsick because a fellow heart mom lost her four-year old boy today. I got to know the mom at the RMH. Her son seemed to go downhill quickly. They tried surgery and implantation of a VAD (ventricular assist device) like Hana had (but a different, much smaller one). He didn’t make it out of surgery. I am so shocked and saddened and heartbroken for his parents. It causes a tremor in my soul. I can only imagine what it does to his parents’ souls. 

Here is the loving kindness meditation – for Sebastian’s family.

May Sebastian’s 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 child’s life force bless the world with each sunrise.
In time, may their hearts be healed and at peace.

Goodbye sweet Sebastian.

Not Sebastian, but a tribute to him

In The ER

Hana had her cath/biopsy this morning. Most everything went well except not enough versed before putting on the mask – she fought like she was being suffocated. During recovery she was unusually agitated.

Back at the RMH. She fell asleep quickly. I took her temp and it was 101.4. I called, called again, no answer, left a message. She woke from her nap, breathing fast. After timing a minute and listening with a stethoscope I counted 84.

We are at the Emergency Department getting chest xrays, ultrasounds, Bloodwork. Cardiology seems less concerned but still sent us here! She is in good spirits considering the circumstances.

Waiting area before cath lab
Feeling bad back at RMH
At the ED
Holding on, won’t let go

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!