Why We Scamper

The Summer Scamper is just a couple days away! This big fundraising event for Lucile Packard Children’s Hospital has the slogan “Why We Scamper” and this week I’ve been taking that to heart and really contemplating, more than usual, what that means to me, especially one year post-transplant.

When you have a baby your life changes, you change, and parents everywhere know this. The person they were before that baby was born is not the same person afterwards, you can never unknow what it is like to be a parent. It was the same when we so suddenly learned about Hana’s heart condition. Bam! All of a sudden, in an instant, our lives changed forever. I have changed from the person I was before, I can never unknow what it is like to have a child with a life-threatening condition. Maybe if you know me fairly well you may not necessarily see these changes, but something fundamental shifts deep inside. I can’t even really explain, with words, what this means. What I can explain is that amazing people were able to save Hana and give her a second chance at life. So, when asked, “Why we scamper?” its because for me, that second chance and the amazing people who gave that to her, touches a place deep down inside where the shift occurred, a “something” I can never unknow.

The Summer Scamper is about kids, of course, but behind all that are the people that save the kids. Some of these people are the amazing doctors, at the top of their game, in an elite class. If they were professional athletes they probably would be famous and get paid lots of money. They have dedicated so much of their lives to saving the lives of kids. It has been a very humbling experience watching (of what I get to see) them work. So, I Scamper for them too – so I can support their dedication to saving the lives of kids.

Lastly, I Scamper for all the kids who are no longer here with us. Well, for the families too, because if there is anything that might create another fundamental shift deep within a person, it might be losing your child. I have seen these parents (and grandparents) and the pain in their eyes shows that it runs to a deep, deep place. So in what small way I can, this is my show of support for them. To honor their pain, I feel like we should not take for granted the life we have. So, I Scamper in gratitude for life.

Please consider supporting our Scampering by donating to Hana’s Heart Scamper team:
https://my.supportlpch.org/fundraise/team?ftid=116471

Here are some images from this past week:

Our amazing Hana’s Heart Scamper team, besides me and Paul, includes: my best-friend Suzanne and her two kids, Delphi and Travers (they are doing the kids Fun Run), our friend Megan who came to the hospital every week to play with Hana, our friend Katie whose daughter, Maya, also has dilated cardiomyopathy and lastly, my friend Brenna who I’ve known since I was a little kid, is participating as a virtual runner!

To sum up Why We Scamper, its for videos like this (Hana leaving the hospital after her transplant. After seven months in that building, she finally got to walk away and leave it behind her):

Possibility and Hope

I’ve got something special to share. This past week we passed the one-year-out-of-the-hospital anniversary. The hospital, including the Heart Center, showed us what was possible by giving Hana her second chance in life and it gave us, all of us including family and friends, hope. When everything seemed too heart-wrenching and terrifying to cope, there was that whisper of possibility and hope that called us to pick ourselves up and keep dealing.

I am forever thankful for all the professionals who made saving Hana’s life their job. From surgeons, transplant cardiologists and cardiac intensivists to bedside nurses, child life specialists and social workers they all play a part in touching the lives of children and their families. I remember once being at Hana’s bedside during an intense moment, unable to do anything but just be there, and I started feeling gratitude for all the people NOT in the room who had a hand in keeping Hana alive – like the person who invented the ventilator and even the person who invented the material to make the tubes that were used in the equipment keeping Hana alive. There are many people behind the faces we see at the hospital who have a part in giving us possibility and hope.

Part of how I show my gratitude is by participating in the hospital’s fundraiser each year in June, the run/walk called the Summer Scamper. Last year was the first year I participated and I got in shape to run while Hana was in the hospital. During her naptime, I would sneak out and run around the Stanford campus. Little did I know, that Hana would be discharged before the actual event! It made the race that much more special, that much more real. I remember crying while running at all the t-shirts and signs that people had made mentioning all that I was so grateful for – possibility and hope, it all felt so fresh. This year’s Scamper will be equally as special as Hana will be the Patient Hero representing the Heart Center (I mentioned this many weeks ago in the post Patient Hero). Since it will be 8 weeks after having a baby, I decided not to do the run when I registered for the race (although I’ve started running and I think I could do the 5K). Instead I will do the walk with Hana (and maybe Corrina if we get our double stroller in time).

The special something I’d like to share is Hana’s Patient Hero video. I wrote the words and provided most of the photographs but I was really surprised by the result. I really loved it and watching it brought tears to my eyes.
https://youtu.be/_fMUkeQfzY8

Please consider showing your support by contributing to our team, Hana’s Heart:
https://my.supportlpch.org/fundraise/team?ftid=116471

Here is a link to the rest of Hana’s Patient Hero page:
Meet Hana, Your Patient Hero

Dear Hana,
We love watching you sing and dance:

 

and cook in your kitchen:
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and laugh at yourself in the mirror:
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We hope you always keep your sweet spirit:
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and resilience:
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You are our greatest inspiration:

 

You are extraordinary:

You are Why We Scamper
Love, Mommy and Daddy:
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Here are a few recent pictures:

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Patient Hero

We have two special things to share with you! The first one is that on April 30th, Hana became a big sister! Corrina Mae Yago arrived after a fairly quick and easy delivery. My mother was here for a few days before the birth and several weeks after to help everyone with the transition. Hana has been really great with her baby sister and is very sweet. She is feeling the pull away from me (to take care of a baby) and has been understandably emotional but really, she’s handling it like a champ!



All of this made Mother’s Day really special for me – I had my two girls and my own mother and we didn’t have to spend it in the hospital (like last year)!


So far life with a newborn has been pretty good – I say that and I fear that Corrina’s fussiness has not yet completely shown itself. The last few days has included those crazy, fussy late afternoons/evenings that challenge your mental health! Before that and while my mom was here we did get out and about and helped Hana have some fun. Hopefully I’ll still be able to get out of the house for some fun outings with Hana and Corrina.

This brings me to our second special share – in about a month will be the annual Summer Scamper fundraiser race for the hospital and Hana will represent the hospital’s Heart Center as the Patient Hero! You can read Hana’s Patient Hero bio by clicking on this link:
https://scamperblog.squarespace.com/home/2017/4/21/meet-hana-your-patient-hero-for-the-betty-irene-moore-childrens-heart-center
You may remember that last year, just a week after being discharged from the hospital after her transplant, Hana attended the Summer Scamper – you can read about it in “A Great Summer Scamper“. We are putting together another “Hana’s Heart” team and you can donate to our team by clicking on the link below:
https://my.supportlpch.org/fundraise/team?ftid=116471
If you would like to join our team, please let me know! I will be walking in the 5K with Hana. Although I would love to run the 10K again this year, I think it is too soon after having a baby to be running!

We are VERY excited to have Hana represent the Heart Center and to support their continued research into treating children like Hana. Because of them, Hana has survived her hospitalization and thrived in life. Because of all they have done for Hana and our family we have enjoyed an amazing year together outside the hospital – that’s right, its been almost one year since Hana’s heart transplant! Hana has never been stronger, happier or healthier! She has been eating and gaining weight and enjoying all the activities a toddler should get the chance to enjoy! She is living life!

As I write this, it is the last evening of my life as a thirty-something. Tomorrow I enter a new decade. As I reflect about back on my thirties, but more this last year of being 39, I feel like this last year has been the best of my life – Hana finally got her gift of life, we all got to move out of the hospital, we got to move home after being at the Ronald McDonald House, we got to live life (with Poppy) back at home in San Francisco, we got to add a new baby to the family. All of this happened in the last year. It is all so incredible to me. It has taken a village of people to help us get here and we are incredibly grateful! I am excited for our adventures of the next decade!

 




Thank You Nurses

Tonight (Monday) I had the great honor of being the parent speaker at the Nightingale Awards, recognizing nurses at the children’s hospital. It was a great privilege to get to put into words how thankful we are to all the great nurses we had (we had some great nurses and nurse practitioners outside the hospital or in clinic as well). The two nurses that won Daisy Awards for the care they gave to Hana were also there and I was happy to see them recognized again. Many of the nurses that Hana had were there and either won or were nominated for an award.

It was suggested that I share my words from the evening, so here it goes:

A little over two years ago, in August of 2014, my husband, Paul, and I welcomed our first child, Hana, into this world. When our daughter was four months old she developed a minor cough. It was so minor I almost didn’t mention it to her pediatrician, and as predicted he didn’t think there was anything to worry about. But five or six weeks went by and her cough slowly started to sound wetter. Then one day she suddenly threw up. Then in the middle of nursing she would suddenly stop. And I thought, babies cough sometimes and throw up sometimes and get distracted while nursing, right?

But she threw up again and again the next day and we started to worry. One evening after she threw up and seemed very quiet  and I was scared. The next morning we took her to a new pediatrician, because our insurance had changed to Kaiser. The pediatrician ordered a chest x-ray. We went downstairs for the chest x-ray, which showed an enlarged heart. They whisked us back for an echocardiogram and afterward the cardiologist walked us next door to the emergency room to wait to be transferred across town to UCSF.

At UCSF my daughter seemed to decline rapidly. Her heart was in severe failure. They worked on her for hours, well into the night. Things looked bad and then worse and then the next morning they sat us down and told us our daughter would need a heart transplant. We were in shock, and reeling that a persistent cough had somehow led to her needing a heart transplant.

After one day at UCSF, our daughter was life flighted here. In the process, there were talks about ECMO. When we arrived here, a team of people got to work furiously. As they worked, I sat in a chair outside my daughters room in the CVICU, shocked, drained, exhausted from being up for two days and my body aching from head to toe.

We were lucky. Our daughter got better. It wasn’t without some very scary moments but she didn’t need ECMO. And after two weeks in the CVICU and one week on 3 West she was discharged. Of course, our home life was turned completely upside down with medications and a feeding pump and NG tube, and lots of appointments, but we got to be home.

It was last November, after nearly nine months at home, that I noticed my daughter was breathing fast while sleeping and we took her to the nearest ER. There, they transferred her back down here and discovered that her left lung had collapsed. The weight of her enlarged heart had just become too much and a tiny touch of rhinovirus was all it took to tip the scale.

For three weeks they kept her intubated and attempted several ways to get her lung to expand. There was no success and after a very scary failed extubation, it was clear that her heart just couldn’t take it. That’s when they decided to place her on the Berlin Heart, a ventricular assist device that would help her left ventricle pump blood.

The Berlin Heart is a 200 pound machine on wheels housing an air compressor with a laptop sitting on top. During open heart surgery, two cannula are attached to the heart, one exiting the left ventricle and another entering the aorta. Each cannula exited the body and attached to a chamber that hung at about groin level. This chamber is what pumped her blood. There is a six foot tube that connects this external chamber to the rest of the machine.

Being on the Berlin Heart meant that our daughter would have to stay in the hospital until a donor heart become available to her. They told us the average wait was 6-8 months. We are lucky, in that, she would not have to spend the time waiting in the CVICU and two weeks after getting the Berlin Heart, she was moved to 3 West.

Because of the nature of the device it meant that our daughter would have to be closely supervised if she were to leave her room and would always have to be accompanied by a specially trained nurse in order to leave the 3rd floor or even go outside. Because of the short battery life, we were restricted to 20 minutes of time with the device being unplugged. It often felt confining.

Paul and I, basically packed our bags and become residents of the hospital. This was our new home. We lived here, we ate here, we slept here, we paid bills and raised our daughter here as best we could. We decorated her room and set up a play area. She had a few playdates from friends that came by. We had a routine that included, PT and OT, preschool, blood draws, dressing changes, nap time, scavenger hunts around the 3rd floor and a little time outside throwing things into the fountain or walking around the front of the hospital. That was our life.

We were lucky because our daughter actual became quite healthy – she learned to walk and nearly run. She tried to climb things and she usually felt well enough to play. Then came The Call.  After more than six months in the hospital, one Saturday morning we got the call that a donor heart had become available for our daughter. It is a moment flooded with so many strong and mixed emotions that I can’t describe.  A moment I’m sure we will never forget.

That was May 28th. She went into surgery that afternoon and in the wee hours of Sunday, May 29th we saw our daughter wheeled out of the elevators on the 2nd floor with a miraculous, new heart.  One week in the CVICU and another week back on 3 West and on June 12th, nearly 7 months after being admitted our daughter was discharged to the Ronald McDonald House. After being away from home for nine months, we have now been back at home for almost two months.

Throughout the crazy journey, we’ve had excellent care from the whole team of people here. We had amazing doctors and nurse practitioners, explaining the worst and best case scenarios, the game plan, the risks, the side effects, what to hope for and what to be realistic about. They did a great job guiding us through the process from one big step to the next.

But I think in life we rarely jump from one big step to the next. Life is a series of moments. And when you are in the hospital with your sick child trying to survive from one moment to the next, the only other person there with you besides family, is a nurse. It is a nurse who is down in the trenches, doing the nitty gritty, taking care of details, making sure your child makes it from one moment to the next.

Its nurses who foreshadow the details of what is to come in the next big step and how to prepare yourself. No one has more experience in sitting in a room with a patient and their parents than the nurses. That experience can be the guidance you so desperately need to get from one moment to the next. While the game plan for your child is set by the doctors, it is the nurses that actually take you through it.

The nurses we had, and I say ‘we’ sometimes, because in so many ways the nurses take care of the family, not just the patient, they were usually the ones to remind you to eat and drink and rest and sleep. It was a nurse that told me it was okay to go home for a couple of hours when I hadn’t left the hospital in three weeks. They watched my daughter, often sitting her in their lap and showing her cartoons on her iPad, while I got out of the hospital for an hour here and there. They comforted her while I snuck down to the cafeteria for coffee. They brought in decorations for my daughter’s room, and small little trinkets or toys they thought she would like to play with.

We even had a nurse that made custom wraps to help keep my daughter’s Berlin Heart dressing on more securely and comfortably than the ace wrap. It was a nurse that put her arm around me when I broke down crying in my daughter’s room that first day in the CVICU. It was a nurse that my daughter held out her arms for to get picked up when I wasn’t there to hold her.

The nurses we had were our daughter’s best advocates and they taught me how to advocate for things I didn’t even know I could advocate for. They brought up things that no one else had thought of to ensure that my daughter was getting the best possible care and had the best quality of life possible in a hospital setting.

Sometimes it was big things, like getting moved into a more comfortable room or talking directly to the attending physician a concern. But often it was a lot of little things, that they often had to work hard to make happen, things like making making sure my daughter got to go outside at least twice a day or making sure blood draws went smoothly or procedures and dressing changes didn’t happen in the middle of her nap. It was those little things  that add up, and in the big picture, they made day to day life easier and more comfortable during a long hospital stay.

The nurses we had exemplified excellent standard of care. One standout example of this was when my daughter’s Berlin Heart completely stopped working unexpectedly. Now, this device is considered extremely stable and for it to just stop is pretty much unheard of, but it did stop and my daughter and I were not even in her room when it happened.

It was because of her nurse and the other nurses that additionally responded, that this emergency situation was handled incredibly swiftly and calmly without any harm to our daughter. I had never been more impressed by how unruffled the nurse appeared to be and how smoothly the rest of the response unfolded. As parents this helped keep us calm and reassured, something you always cling to when you have so much to deal with with a sick child.

As days dragged into weeks and weeks dragged into months in the hospital, what really became apparent to me, through the culmination of many of the things we experienced, was not just the excellent care our daughter received, but the dedication of her nurses.

Dedication shows itself in compassion, sympathy, thoughtfulness, diligence, playfulness, affection, kindness, and even excitement over good news, like receiving a new heart or finally getting discharged from the hospital.

After spending so much time in a hospital, meeting other families and patients and having to sometimes witness their suffering and pain and even loss, I can’t imagine how nurses are able to cope with this themselves day in and day out.

What I see is their dedication to nursing, dedication to their patients, dedication to the families, by showing up each shift, making lives better or easier or a little happier during challenging times.  We certainly very much appreciate that. And oftentimes it is the attitude of the nurse that can really change the outlook of your day.

As a parent, one thing that really touched my heart over the long haul, was these nurses become your co-worker, as you work side by side to care for your child. They become your partner in your child’s care. The become like your neighbor, the familiar faces you see in the place where you live. And sometimes they even become your friends as you learn each other’s stories,  you learn about their families, where they are from and what they love outside of nursing. I think this simple human connection is what makes the difference for parents and patients between existing in a hospital and actually living life in a hospital.

Thank you nurses for all you do. Thank you for sharing the burden of our hardships and the joy of our triumphs. Thank you for treating my daughter as the precious life that she is and for welcoming us into your hearts.”

Paul and I attended the event and it was really great to see so many familiar faces. I do wish we had seen more of the nurses Hana had while in the CVICU (some were nominated for awards but were not in attendance), but we had a really great time.

Hana, of course, continues to do well although she seems to be on this new kick of putting things in her mouth. I don’t know why this is starting since she is normally very good about not putting things or her fingers in her mouth. I suppose it is a toddler-boundary-testing thing. I hope this particular one doesn’t last too long.

Thank you nurses, everywhere!

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.

 

 

Zero Rejection

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!

Tired Day

Sleep is proving to be difficult. Hana had fits of wakefulness in the night. Finally I asked for Tylenol and she slept for 3.5 hours straight. There still has been no nap longer than 20 minutes during the day. It is very difficult to get her to sleep before 10pm because of all the care ordered at the end of the day. We can’t let her sleep late either because of all the stuff she needs to do in the morning.

Hopefully we are only here one more week. We still need to get through her first heart biopsy on Thursday and another round of IVIG therapy over the weekend.

The days get to be long when Hana is indifferent to so many things. We took her to preschool and the playroom for a short time each. I also wheeled her around in the wagon around the third floor over and over again.


She’s still pretty cranky. It could be healing from heart surgery or cranky from being tired or moody from steroids! Her nurse again took us over to the fountain in from of the adult hospital. Hana did a lot more walking and almost running and she almost looked like she was smiling! We still hav to be careful of her falling, especially if she tried to catch her fall – she could really hurt her chest incision (hopefully the staples are coming out on Thursday).


Hana got her pacing wires out and her dressing changed. They started to wean her diuretics. Maybe soon she can be off the monitor or portable monitor and we can take her out of the room, off the third floor and maybe even down to the atrium. That would be amazing. But then again, we have had the privilege of so many amazing things come our way!

200 days in the hospital, 9 days with her new heart.