Four Years Ago Today

Today, February 11th, marks the 4-year anniversary that we found out about Hana’s heart. I think about that day, 4 years ago when our lives changed forever. Hana had a mild cough that had persisted over two months, and was progressively sounding worse, but not too bad. About a week before this, I was holding her and she suddenly vomited all over. Then it happened again a few days later and again a few days after that and then she was vomiting once a day or in the middle of the night. Then, sometimes, she started getting fussy while nursing and would stop after a couple of minutes and I remember her forehead felt sweaty. A couple days before she took a three hour nap which was so unusual for my difficult napper of a baby. But it was the vomiting that worried us most. The vomiting just seemed like it took a lot out of her. The night before, she vomited right when Paul got home from work and she looked terrible. She was very, very quiet and pale and I think she actually looked scared. Something didn’t feel right. But a mind has a way of explaining things away and logic has a way of quieting fears even when they should be heard.

Over the next few days, we would recall these things again and again for doctor after doctor. They would nod their heads knowingly, they had heard this story countless times. It’s a little uncanny how similar the stories are, when you’ve heard enough of them. Of course, parents think it’s something else. Even most pediatricians would think it’s something else, because it almost always is. But not this time and luckily, we got a pediatrician who wasn’t convinced it was something else. I remember hearing the nervousness in her voice when she told me to take Hana downstairs for a chest x-ray. I remember the x-ray tech looking at me after he took the image. He was solemn but said nothing. He knew that image didn’t look right. I remember the urgency in the doctor’s voice a little later when she called me back because the x-ray showed an enlarged heart. I remember crying on the phone when I called Paul to tell him. I knew an enlarged heart was bad, I just didn’t know any more than that. I remember back at the medical center, about twenty minutes later, the echo tech and the cardiologist staring intently at the image of Hana’s heart on that screen. The cardiologist asked me to wait in a room, not an exam room, just a nearby room until she came back. People had been rushing around and talking in low voices. I don’t even remember exactly what the pediatric cardiologist said – something like “she’s in heart failure”, “we don’t know yet how bad”, “yes your husband should come right away”, “yes you will definitely need to cancel your trip to Hawaii in two days”, “she will probably be in the hospital at least two weeks”, “she will be transferred out to UCSF”, “there is still a lot we don’t know… ”

I was surprised when the pediatric cardiologist walked with us next door to the Emergency Department at the hospital. She stayed until they had Hana hooked up to the monitor, my first of many, many experiences with this. She had explained that an ambulance would come as soon as possible to transfer Hana to UCSF hospital across town. It was the brand new hospital, only opened one week. The pediatrician came into the emergency department to talk with us too. She was just checking in with us and she gave me her personal cell phone number to call her if I ever had any question, I could call her at any time. I remember Paul getting there and staying with Hana so I could go outside to make a phone call (the reception in the emergency department is terrible. I remember telling my parents what was going on – it was an enlarged heart, they were transferring her to the big, prestigious hospital across town, we had to cancel our trip to Hawaii and could they let my sister know (we were going to Hawaii to visit her). My parents were sitting in their car in the parking lot outside of a restaurant, waiting to go inside to celebrate my grandmother’s 96th birthday. My dad asked if I needed my mom (the pediatric nurse) to fly out. I felt like a child – a scared, lost child who needed her mom. I always think “no” to those kinds of questions. Can Paul and I handle this ourselves? Of course we can. But should we? I croaked out a “yes”.

I remember seeing Judy and Neal through the doors of the Emergency Department. They were standing looking into our room. They would take our dog Poppy. I remember being relieved that someone local was near and ready to help. I remember watching Paul walk out of the Emergency Department with that empty stroller, so he could take it just four blocks back to our home and then meet us at UCSF. I remember texting a couple of people on the ambulance ride to the new hospital. My friend Lisa and my friend Rose.  Hana was asleep in her carseat in the ambulance. I remember arriving at some back entrance to the hospital and going up to the CICU into a room no other patient had yet occupied in this new hospital. The staff was still trying to find the supply room. I remember the attending physician happened to be the head of pediatric cardiology at the hospital. She and a neonatologist worked to get IVs started and maybe an arterial line? Hana was crying and fussy and wouldn’t be still. They were having a very, very hard time even to get an IV going. Paul and I were bent over her bed for hours showing Hana her favorite book from home. We talked and whispered and sang and tried to keep her calm. It seemed very important, whatever the cardiologist and the neonatologist were doing. I remember the cardiologist taking out her phone and calling her friend to tell her she wasn’t going to make it to the big birthday dinner of their other friend that night, she had to stay at the hospital. Eventually they gave up and decided to go with the two IVs. We were supposed to rest. I remember looking down at Hana in a hospital bed and in a hospital gown with all the lines hooked up to her thinking, “How did this happen so fast? How did we wake up this morning thinking our baby was just a little sick?” I was exhausted and I wanted to sleep and yet, I didn’t. How could I sleep when my baby was like this? I remember thinking, “I hope this is the worst day of my life.” I think deep down I already knew the worst was yet to come.

That was February 11, 2015.

The flood gates had been opened and water gushed so fast I didn’t know if I would ever be able to get another breath again. The next morning, the same pediatric cardiologist, the head of her department, sat us in her office and told us that Hana was going to need a heart transplant and she was transferring her to Stanford. We were stunned speechless. Hana seemed to really decline rapidly. I remember my mom, the pediatric nurse who had spent years in the trenches of a pediatric intensive care unit, arrive that morning and within minutes she was calling my dad to fly out too – things were much worse than she thought. I don’t remember too much of that day – they were going to send Hana to the cath lab but then decided it was too risky. They decided to intubate her. We sat in the parent lounge trying to eat food our friends Lisa and Chris had brought. They got Hana ready for her life flight to Stanford. A helicopter? Really? The staff prepped us for how different it would be at Stanford. The helicopter pilot questioned me on how suitable I would be to sit in the helicopter with him. I said goodbye to Paul and my mom who were driving down to Stanford. I got into the helicopter. It floated up into the night sky. The take off was complicated because it was the first time they had transferred a patient out of this new hospital and also the air space was restricted because President Obama was arriving at San Francisco airport. Twelve minutes later we landed at Stanford. The rushed her inside and into the CVICU where a team of people were ready. I stayed out of the room because it was too crowded and busy, there was no place for the mom right now. It was late and it was otherwise very, very quiet on the unit. One of the cardiology fellows pulled up a chair for me outside the room. I sat in it and my whole body ached, it ached so bad I would have a hard time getting to sleep that night, after not sleeping for two days.

I remember trying to make a deal with God, knowing full well that it didn’t work that way. I remember thinking, “This only happens to people in the movies and those movie-parents are amazing and inspiring. Paul and I aren’t that special. We are not those parents. How is that we are now those parents that are doing this?” But our lives changed and our hearts and our minds. And those flood gates that opened? They never close, maybe they just trickle, but they never close. And that sigh of relief at the end of the day? It never comes. And that dream of “I’m going to do this crazy, hard, scary, intense thing of having and raising a child that I will love like I never knew I could love”? That dream is changed, forever. All those thoughts I had about raising a child and what it was to be a parent, they changed forever on February 11th. I can never “unknow” what I know now. There is a peace of mind that I will never know again. I struggled with that for a long time. But now I don’t even remember what it feels like to have it any more. The only thing certain is Uncertainty.

But there is more love than you know. I asked for it, I did. For once in my life, I asked for it because I knew this was more than just me and Paul and Hana. This was about people and community and humanity and love and even more. I think of Kelly and David and their son, Leo, who would become Hana’s heart donor, her angel. I think of their sacrifice and pain and choice and their love. In the face of pain, there is still love.

Thank you all, for being part of that. You have been an incredible force of goodwill and love.

And what about today, February 11, 2019? Hana is going to Forest School and swim and dance. She underwent some neuropsych testing this fall and everything came back great. They wanted to test her because she has been on cardiac bypass which can cause oxygen deprivation and sometimes they see some delays or learning disabilities. We will test her again in three years. We have been very busy. We toured some schools for potentially starting Kindergarten in the fall, although we are still inclined to wait another year. Hana is eligible to start, although she will just be turning 5 on the first day of school.

What we are battling now are Hana’s GI issues. She has had chronic diarrhea since the summer and over the past week she has been increasingly complaining of stomach pain. As a parent, it’s hard to swallow. No one wants to see their child suffering. We did some food elimination diets including dairy free and then two weeks of no sweet (no sugar, no fruit, no artificial sweetener) but nothing helped. Hana complied like a champ. She is so good, it makes my heart melt. So, now we are left blaming her one immunosuppression medication – Cellcept. There has been talk about switching her to another medication but we had to decide a little while ago if we wanted to make that switch and we decided to wait. If we switch her medication we have to do it 4-6 weeks before her next biopsy so that they can check for any rejection with a new immune suppressing drug. Hana’s next biopsy is in a couple days on Wednesday, February 13th. So now, we will have to wait until the summer when she has her next biopsy. That is, of course, assuming that Wednesday’s biopsy results will show No Rejection and she will not need another biopsy until the summer. So, maybe we should have done the switch. I don’t know.

Please keep Hana in your thoughts and prayers on Wednesday for her biopsy. We will update you when we get results!

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Hana on the beach in Hawaii, where she said, “but I want to swim naked in the ocean!” but then she learned about jellyfish, sadly.
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Smiling so big her eyes closed in excitement (of standing next to a waterfall!).
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She loves riding Aunt Christine’s horse!
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Its fun wearing mom’s flip flops.
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A tree swing a Free Forest School!
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Hiking in Hana’s favorite park – Glen Canyon!
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Examining the tree log she wants very much to cross over the ravine.
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Doing her own “face painting”.

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Halloween!

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She still loves carousels!
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She loves baking! We did this pretend cake when she couldn’t eat anything sweet.
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First time at the symphony (to watch and hear Mary Poppins).
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She imitating the seal!
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Corrina and Hana at Tinkergarten

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ABO Incompatibility

Today, Hana’s transplant listing was revised so that she could receive offers for hearts that are not of compatible blood types. For children under two, this has been a common practice in Canada and Europe. This made me very nervous at first.

Yesterday Hana had to get unexpected blood work done to see how much incompatibility she had with other blood types. Hana has A positive blood, so she could receive a donor heart from an A positive and O positive blood type donor. When they measured her incompatibility with type B blood, back in December, she measured 64. I don’t remember the specifics of “64” but I think it means something like the blood titers/antibodies to type B blood was 64, which is high. She would not be able to accept a type B blood donor heart. When they did the blood work yesterday her titers were down to 4!

UNOS (United Network of Organ Sharing) recently changed their rules for children under two, allowing ABO incompatibility to be considered in their listing. Research has showed that children that received an incompatible donor heart actually did better (it was suggested to me that this is because they are watched more carefully). The cutoff is two because a child’s immune system is not fully developed at this age. So, this means for Hana, that when a donor heart because available, she will not be passed up because she has an incompatible blood type. The reason for her titers to be down to 4, I believe, is because of her IVIG therapy.

So, this is good news! (It still makes me just a little nervous.)

In other news, Hana is doing great. My mom left on Monday morning, we were very sad to see her go. I think Hana considers my mom her favorite playmate. Hana is saying lots and lots of new words and continues to use her sign language. She has been a real delight. We are chugging along and I’m trying not to get weary. It’s good to have something like the Summer Scamper to work towards! Thank you to everyone who has donated!

I also stopped pumping about three weeks ago. It has dramatically changed my quality of life! It also means there is now a finite amount of breast milk for Hana to drink, so hopefully she makes some improvements with drinking cow milk and eating! (Some days are better than others).

Below is another beautiful image from Anne Daiva.

Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography

Here are some more images of Hana (that I took…)

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For some reason she loved wearing the gloves.

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160 days in the hospital, 142 days post-Berlin heart, 134 days on the transplant list.

My Name Is Hana

Today Hana said her name for the first time. Just in case you were wondering how to pronounce “Hana” I will tell you it is not like the name “Hannah”. You say it like “hah-nah” or the town on Maui with the same spelling (Hana, the road to Hana) or you could say it rhymes with Mama. Either way, Hana kept looking at herself in the mirror during her PT/OT session and saying her name. Later in the day, she would sign “name” and say “Hana”. It was very exciting!

The few things to report are that the surgeon came back to the room to re-tie Hana’s new pump since the cannulas seemed to have some torque in them and the pump was not lying flat. Then Hana’s latest bloodwork showed that her liver enzyme tests were continuing to trend down since stopping the Zantac.

It continues to be a little difficult to get out of the room as much as I’d like. Hana only gets outside maybe once a day for 15 minutes. I find myself frustrated more than ever. I’ve been feeling a bit impatient and some small things are getting to me a bit. I’m tired of random people barging into the room, especially without knocking and especially when I am pumping. I am tired of personal belongings being thrown away. I get frustrated when Hana is clearly sleeping and the sign on the door says so yet people insist on coming in and speaking at a normal volume. I get upset when the housekeeping folks do not change their gloves in between patient rooms. Then they touch biohazard trash and move our personal belongings with their contaminated gloves. I think mostly I am just weary of not having much privacy or personal space. I think people forget that their workplace is my home. Sometimes I just need to vent and then figure out a way to make things better. We’ve been told that people start to get a little crazy after the 4-month mark of life in the hospital, it seems we are trending in this direction!

I am sad to report that another young child from the CVICU has passed away. Tonight I learned that Jacob, who had hypoplastic left heart syndrome and then a heart transplant and then a host of other complicated medical issues, passed away on March 12. He was just shy of being 14-months old and had spent his entire life except maybe eight weeks in the hospital. It is very hard to hear this type of news.

People have asked how they can help. Right now, what is very helpful is prepared food. We are weary of the cafeteria food and Trader Joe’s frozen meals. We only have a microwave. The other helpful thing is for visits with younger or youngish kids. This is for Hana who has been really, really loving seeing other kids! Everyone just needs to be healthy and willing to use hand sanitizer.

We have some fun things for the blog coming up soon, so stay tuned!

Thank you again for all the support!

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131 days in the hospital, 113 days post-Berlin heart, 105 days on the transplant list.

Problems With Pink

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First, I want to start off by saying that we have been enjoying the novelty of Hana’s new pink Ikus (the air compressor part of her Berin Heart unit). In pink fashion, a college friend of mine is doing a fundraiser for Hana through Pink Zebra products. The fundraiser ends March 7th. Now, I am TERRIBLE (shy) at promoting things like this but Laurie has put in a lot of really great effort and we really appreciate it! The  products look amazing and I was kind of wishing to get some for myself!

In other pink news, the so far unnamed pink ikus has been a little problematic. It alarms a lot more that Hana has “kinked” the tube from the the pump. I’ve been told that this will happen when you switch out the ikus and it will adjust as time goes on. But the more worrisome problems are the alarm about measurement discrepancy (not to be worried about but mildly annoying) and the discharging battery alarm. The latter is a very serious alarm. The Berlin Heart battery is guaranteed to last 30 minutes (and it takes six hours to charge!) and it gives you a warning when you’ve used the battery for ten minutes and then again at 20 minutes. When you get to 30 minutes it alarms that the battery is discharging. Or, so I’ve been told because we have never taken the risk to wait and find out. So, we’ve been quite surprised to get this alarm after using the battery for only ten minutes. The first time it happened we were outside with the nurse and we had to run in to the nearest outlet to plug in. It’s considered a very urgent situation. Well, we were told (by Berlin Heart) it was okay and we were able to go back to Hana’s room but now it’s happened two more times and we end up running back to the room and plugging in. Today they sent the logs from the computer to the company. Today the cardiologist, one of the leading experts on this device, told me that I should rest assured that even if the pump stopped working Hana’s heart would do fine pumping on her own until they could get her hooked up to the backup Ikus. Besides the emergency hand pump is there too. I’d really like to keep the pink Ikus so I hope they can figure out what is going on.

My sister has been here since Wednesday morning and we’ve had a lot of fun. She leaves Monday night. It was great to have company here during Hana’s IVIG therapy since Hana couldn’t leave her room for 24 hours. I’m sad she has to leave. She did get to witness Hana’s explosion of new signs and words. She has a new favorite each day. My personal favorite was “rainbow” which she usually shortens to “bow”.

Thank you for all the love and support we are so grateful! I never get tired of saying this and we truly feel very lucky every day.

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109 days in the hospital, 90 days post-Berlin Heart, 82 days on the transplant list.

What We Are Waiting For

First off, I want to say Hana’s surprise has been delayed again and now we are looking at Friday of this week or Monday.

Second, Hana is doing great! She’s not puking too much, her vitals are stable and we are just working on getting some of her transplant blood work repeated since some of it was done a year ago. She seems to be fairly on track with her developmental milestones other than eating. Her walking is actually shakier than when she was at home and I attribute that to the pump and drive line always being in her way. Some development will be delayed and that’s just the way it is. We are working on independent play skills and sensory learning since that’s where I can actually do something to change what is.

We are settled, as best as we can, in this “camping” mode in a child’s room which is inside a hospital. I still get a bit frustrated at our loss of autonomy and independence, especially when it comes to Hana’s care. At home, I was always tweaking things in order to optimize outcomes for her – such as when to give meds or tube feeds so she doesn’t feel sick or tied down and she gets the maximum amount of normal kid activity and sleep as possible. I was particular, maybe even meticulous. I do my best here but it can be challenging. I get frustrated when people get bent out of shape because they see me whiz down the hallway carrying Hana, pushing the 200 pound Berlin Heart Ikus with a backpack of activities and we are on our way to the seating area on the third floor for a change of scenery. The get bent out of shape because they can’t fathom all that being manageable. Just because they imagine it being hard for them does not mean it is hard for me. It may require a lot of effort, but that doesn’t make it hard or even unsafe. I don’t want to be limited by others’ limiting beliefs. I can be very stubborn that way, but please don’t tell me what is not possible just because you cannot imagine the possibilities. This is the hardest part of living in a hospital (in our current situation).

But. Yes, there is that. I busy myself creating as much of a normal childhood for Hana as possible and maybe that is because I want to enjoy the break from worry and high stress that will come when she has her heart transplant. I know that day must come and hopefully soon. But it is a hard thing to hope for. In order for Hana to live, another child must die. And although that child is not dying so Hana can live and they would have died either way, still, it is the death of a child that will save Hana. Somewhere in the western United States a child is living and breathing tonight who one day, relatively  soon, will not be, and Hana will get his or her heart. So, to hope for this day to come soon is hard to wish. But the day is coming with or without my hope and what I tell myself is that we hope Hana gets matched with an available heart soon. But still.

Forever, as long as I can make that stretch, I will be full of gratitude for the family of that child and the child whose heart will become Hana’s. Thank you for the honor with such a precious gift.

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The White Food Experiment

Tuesday we took Hana to Stanford for an appointment. I remember when she was still in the CVICU at Stanford and was starting to stabilize and we started hearing about what might happen next. One of the things they mentioned was that some kids stay until in the hospital until they get a heart transplant, they may have to go on ECMO or a Berlin heart. But then there are some kids that get “well enough” to go home on oral medications and some of those kids even do well for years before they need a heart transplant. There are some of those kids that even end up improving. They couldn’t tell us which scenario would be Hana because they don’t yet understand why some kids do well or even improve.

So far, Hana is one of the kids doing well on oral medications. Her echocardiagram, although not worse, is still very severe. On the outside she looks like a normal baby. She is thriving and growing and developing. The term they used was “exceptional compensation” – her heart is very, very sick looking but she appears to be doing very well. There was a pediatric cardiology fellow that joined Hana’s attending doctor for the exam. He, especially, seemed to be very impressed to look at her (after having just reviewed her latest echo).

I feel very fortunate. It’s a reminder on how fortunate we have been.

At Stanford talked a lot about weaning her from the tube and the risk that they are willing or not willing to take with the wean. She is doing well, perhaps because everything is managed so carefully right now. Once the tube is out that becomes harder. They would like her to weigh 10kg before we do anything drastic like pull the tube out and see if her hunger will make her eat. She weighed in at 8.45 kg, so she is still gaining about 7 grams a day. They decided to drop her mid-day Lasix dose because her BUN was so high, but we’ll see how she does and if she starts to retain fluid. We don’t have to take her back to Stanford for three months!

I got the impression that I need to be more patient (when it comes to her feeding progress).

On a daily basis, moment to moment, some things are still a lot of work – mostly on my mind in this category is feeding. Today I made specially prepared baby food in forms and textures that I thought would be more conducive to eating. I took them to our feeding specialist appointment, which we haven’t been going to because the therapist was on vacation. Hana didn’t want to eat the split peas. We mixed them with yogurt and then she ate some, but just a little, maybe a teaspoon. Then we tried some string cheese. Hana ate almost half a stick! It was very encouraging. The final conclusion was that she likes and trusts white food.

I really had my doubts at first – could a baby really prefer foods that are white? But the feeding specialist assured me that it was not crazy to think she only likes white foods. I guess it makes sense, breast milk is white. Yogurt is white. Mashed potatoes are white. All the foods that we have the most luck with are white. So we wrote down a list of white foods. Over the next week I am going to introduce as many white foods as possible to see if that makes a difference. So far we have yogurt, cheese, cottage cheese, vanilla pudding, chicken breast, cauliflower, white asparagus, tofu, rice and white beans.

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New Bloodwork Results

This past week has been about the same. Hana had a cold with a runny nose and she really didn’t want to drink from her Milk Bear. Today she only drank two ounces although she’s been averaging 6-8 ounces. She was definitely more cranky and then I worry it is her heart. Maybe “worry” is the wrong word, perhaps its more like I’m on high alert.

One day last week, she vomited in the middle of the night and her NG tube came out. We decided to leave it out rather than place it again at one o’clock in the morning. The next morning we wanted to give her as much time free of the tube, so Paul went to work and I thought for sure I would be able to find someone to help hold Hana while I put the tube in. Well, it was getting late and I needed to give her medications (via the tube) before too much more time passed. I wasn’t able to find anyone around to help hold Hana. I was getting desperate so, of course, I called my mom.

My mom was able to instruct me on how I could hold Hana so that I could put her NG tube back in by myself. If you have not witnessed NG tube placement on a baby, I can tell you that it is very unpleasant. Hana is squirming, arms flailing, head going from side to side. She is screaming, sputtering, crying, choking and gagging. It’s awful and as the mom or the parent, it feels even worse. I had to take a few moments to take some deep breaths and psych myself up. I decided that if I couldn’t get the tube in, I was going to walk down to Kaiser and ask someone there to help me.

I swaddled Hana’s arms by her sides and then sat in an armless chair with her on my lap. I put one of my legs over hers and then had all the things I needed laid out on her high chair tray. It took a couple of attempts but I got the NG tube in and I managed a pretty nice tape job too. I don’t know if I’ve ever been more proud of myself. It was very empowering. I had thoughts of letting her go tube free more often, for several hours a day because now I could just put the tube back in myself. I don’t know if I want to subject her to that much trauma every day. I wish I knew which was worse – having the tube in constantly or getting a break from the tube but having to endure getting it put back in more often.

Last Friday we had to get bloodwork for our upcoming appointment at Stanford on Tuesday. From what I can tell, the majority of her tests were basically “normal” or at least the same. One test – BUN (blood urea nitrogen) was twice as high as the upper range of normal at 34. I know they talked about maybe having her level be close to 30, but then last time, when it was 15, they seemed satisfied. BUN measure dehydration. They want to keep her dry because it is less load on the heart.

The other test that was different was her BNP which is B type natriuretic protein. I’ve talked about this before. It is basically a substance that is secreted by the ventricles when the heart is in failure. It was going up and up and up since Hana was discharged from Stanford. At the highest it was 1055. Now is is at 589. I think that is great, but we’ll see what the cardiology team at Stanford says. I’m still happy that it is going down instead of up! (By the way, normal levels would be below 100).

Now we just need to get her eating! I’ve been researching a tube weaning approach developed in Austria called NoTube. They have a netcoaching program where they talk with you via web conferencing every day for an hour or so for three weeks. Apparently they have a high success rate. It does cost $4,000! What really turns me off is that they seem like really pushy sales people so I have a level of mistrust. Maybe it is just a cultural thing. I don’t know.

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