Summer Scamper

April 18, 2016

The rest of this week has been great! I decided to sign up to do the Summer Scamper 10k race on June 19th. It is a fundraising event that benefits the children’s hospital were we are living. You can visit my fundraising page here: https://my.supportlpch.org/fundraise?fcid=661013
You can also visit our Hana’s Heart team page. If you’d like to join our team, please let me know! My friend, Suzanne, is organizing the team. It sounds like it is going to be a great event. The unit here forms a team each year.

This week, Hana got to go to the adult side of the hospital not once, but TWICE to watch live music. She seemed very excited and couldn’t stop looking all around her – there were so many new sights and people. During the music, she mostly wanted me to hold her and dance around. She kept signing “dance”! Our amazing nurse practitioner accompanied us both times.

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Dancing with Grandmom!

My mom is still here and she and Hana have been having a lot of fun together.

Hana also had another great play date this week with friends from San Francisco. As you can see in the photo below, Hana has a backpack on. I very reluctantly got Hana a little backpack with a tether on it. She is just getting too fast and I’m afraid she is just going to take off running and forget about the drive line and really hurt herself.

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In other news, the issue of freedom outside seems to be clarified in Hana’s favor. This does not mean that a nurse is required to take Hana out front, individual nurses may still decline to take her, but it was made clear to everyone what the protocol is and how to handle it and why it is important to Hana. From the very beginning the medical team has said that they want and expect Hana to meet all of her developmental milestones despite being in the hospital and on the Berlin Heart. I think going outside and getting to explore the great outdoors is important for that! I am very grateful to everyone who has helped make Hana’s life in the hospital as enriching as it has been!

Sadly, things with our dog, Poppy, have not been going well lately. She has been acting out and doing things like peeing on beds, snapping at dogs and whining all hours of the night. This has made it very difficult for the various generous people who have been looking after her. When we pick her up and have her at home with us she is not like that at all. We are not yet sure what we are going to do but we are brainstorming different possibilities.

On Friday, a really wonderful photographer, Anne Daiva, came to the hospital to take some Hana and family photos. Below is a quick sneak peek, but hopefully we will get to share more wonderful images when we get them!

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Photo Credit: Anne Daiva Photography

The rest of the images are just life as it is as we wait!

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There have been some other fun things that I hope to share soon.

155 days in the hospital, 137 days post-Berlin Heart, 129 days on the transplant list.

Donate Life

April is National Donate Life month. What this means is there is a campaign to increase the awareness about the amazing gift of organ donation and to encourage more people to register as organ donors. If you are reading this blog then you are probably already aware of what the gift of a donor heart would be for Hana and our family. This month, I will be adding some support for this cause in addition to our usual updates. We would like to encourage anyone who is not already a donor to register! If you’d like more information, please read the “Why Be A Donor” page from the Donate Life organization.

The thought of becoming an organ donor is not a pleasant one, especially if you take a moment to consider if you would donate your child’s organs. I hope that moment never comes for you. To consider organ donation at a time when your child has been pronounced brain dead and probably in a situation that was a tragic shock, must be very difficult a midst overwhelming grief. I mention this because this is what a family will have to do someday when they make the choice to give the gift of life for Hana. I want to honor them, their choice and the memory of their child by really trying to feel what it must be like to be in their shoes. It is about human connection. This donor family understands what a gift of life would mean to a family and rising out of their grief they can hope to alleviate some suffering.

Paul and I are both stubbornly independent people, so to talk about this need of a gift of life for Hana is out of our comfort zone. While I imagine anyone would feel uncomfortable, I think for me, I try so hard to “do it all myself” and “not rely on anyone”, and now, here I am, totally and completely dependent on another family choosing the gift of a donated heart. For our daughter to live, some family must make that choice. We will be forever indebted to them. It is no longer good enough to just “Live and let live.” Now, I feel like “Live and help live.” I also see this as a chance for greater human connection. This is why I write this blog. This is why I encourage you to register as an organ donor and to help spread the awareness of organ donation. It’s about a level of human connection.

If you are interested in helping to spread the word, please let me know! Stay tuned for more tomorrow.

Now, let’s talk specifically about Hana. She is doing great! I’ve heard them say she is the Poster Child of a Berlin Heart. She is getting around and developing normally. Of course, she is still delayed in that she is not eating and must be NG tube fed. Monday afternoon she starts her next round of IVIG therapy. I hope it goes smoothly like the last two times. More than that, I hope it continues to help suppress her antibodies so that she can match a greater number of donor hearts. A couple days ago, Hana received a package from my mom. In it was a cabbage patch doll that we had at home and used as a “guest” during our home feeding sessions. This doll already had her own NG tube but now she has her very own Berlin Heart! She also has an outfit that matches Hana, all thanks to my mom!

Closeup of Hana

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136 days in the hospital, 118 days post-Berlin Heart, 110 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.

Pump Change

For the last week the team of nurses, nurse practitioners and doctors have been more closely following the deposits in Hana’s pump. I realize using the word “pump” is a little confusing especially since it is both a verb and a noun. The Berlin Heart is both the Ikus (air compressor and computer) and the external “chamber” of the heart through which you can physically see blood moving. It is the latter part, the chamber, where deposits collect and clots may form. They decided that an “area of deposits” had caused enough discussion that it was time to change out the pump (chamber).

If a large deposit or clot were to break off from the walls or valves of the pump chamber than that could cause Hana to have a stroke. This is obviously very serious. Usually by now they have already changed out the pump but somehow Hana made it 110 days with the original pump that was implanted.

When Hana’s surgeon was done with his transplant surgery he came up to the floor where we were getting ready. We had moved a bunch of stuff out of the room to make room for carts and equipment. They had certain drugs and blood on hand downstairs in the CVICU in case we needed to go down there. We moved the position of the crib and they set up a sterile field next to it.

Hana had to have her arms and legs tied down with restraints. I put on the iPad and let her watch Rachel And The Trerschoolers. Everything was set up. The surgeon scrubbed down the cannulas with betadine. They unhooked her from the Ikus and hand pumped. Then the surgeon cut ties holding the pump on and clamped the cannula. He put the new pump on, which was filled with saline, and the OR person (surgical nurse, I’m guessing) put the new ties on while Hana’s bedside nurse hand pumped. The actual procedure time was only a couple of minutes.

Hana did lose the 15mL of blood that was in the old pump. Some of it did flow out and over the sterile cloth and onto her diaper and legs. I requested to have the pump when they are done with it (they examine the deposits). I think it will be great for Hana to be able to have it some day.

Hana did great during the whole thing. There was one point where she squirmed, when the surgeon had blocked her view of the iPad! She just seemed so relaxed! It was really interesting to watch the surgeon at work since this is the only scenario in which I would have that opportunity. He was great. Serious, down to business, very clear on who is doing what. He is quick and moves on. He seems very busy and does not linger. It seems really nice that we do not have to go to the OR for the procedure. We don’t even have to go to the CVICU.

Everything went well. They monitored Hana for 30 minutes after the procedure. Then we hung out, had some lunch and then a nap. In the afternoon Hana and I had some visitors which included some older boys but they were really great with her and she loved their company!

Overall, it was a good day!

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128 days in the hospital, 110 days post-Berlin heart, 102 days on the transplant list.

19-months Old

Today Hana turned 19-months old. It is also the 4-month mark of Hana being in the hospital. It seems like a lot longer than that. Below is the sign Hana and I made for the door to her room. We are really hoping that her nurse, Marisa, gets some special recognition for doing such an amazing job of handling the situation when Hana’s Ikus stopped. I think everyone deserves some kind of recognition because there were many others that also responded so quickly, it was really a great team effort.image

Our restrictions with plugging in the Ikus have been mostly lifted. We still have to keep the Ikus plugged into the wall while Hana is in her room. This does limit our mobility in the room but we are working with it. Other than that we are just trying to get out of the room for twenty minutes at a time so that we wear down the battery each time.

I took the plugging into the wall situation very hard. Sometimes all of this hospital living can wear on you. Actually, having a child with a long term medical condition can wear on you. I deal with it by having a positive outlook and really trying to shield myself from negativity but it is a fine line. This latest thing just pushed me over the line, but I just remember that really, we are extremely grateful. Hana is being cared for by an amazing team of people in an amazing hospital. She has a very serious heart condition that has treatment options, even though transplant is not really a cure (it is swapping one heart condition for another). Not everyone has options. So we are very, very grateful.

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I know I complained a little about her nurse the other day and I feel bad about that. The nurse is a very kind and caring person who is dedicated to giving Hana the best care she can. She is very attentive. She is a really nice person. I just was not thrilled about how she reacted to the light on the Ikus being a little slow to go off. But we are grateful to have so many great nurses.

This afternoon we got to take Hana outside twice. The first time we went to the atrium and took some pictures of Hana without her mask on (just for a few minutes). Today we also changed out her NG tube so she got several hours break from the tube and we got to take some tube free pictures too! She really loved smelling the flowers! She scrunched up her nose when she was working on smelling them! She loved inspecting the small flowers.

Later in the afternoon we were able to take her out to the grassy area in the front of the hospital. Hana was thrilled to see some new sights. There were some big birds (ravens) and squirrels. She also got to feel some grass! It was very exciting for her.

Thank you for all of your support!

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Long eyelashes!

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122 days in the hospital, 103 days post-Berlin Heart, 95 days on the transplant list.

 

Another Freedom Gone

I have a bitter taste in my mouth, so my tone may reflect that. Tonight they took another freedom away – now Hana’s Ikus must stay plugged into the wall, rather than the extension cord. One time, when we plugged the Ikus back in to the extension cord, it took three or four minutes for the red light that indicates no warnings to go off. Somehow, I feel like it has gotten carried away. I don’t know how the message got relayed but I felt like our nurse was not really getting what I was saying and was kind of adding more to what was going on (or not going on). I hate complaining about nurses but I’m just so annoyed and irritated with myself for saying anything at all.

Hopefully this is not a permanent change but it has already been harder. We are definitely not getting out of the room as much and I can tell it is wearing on Hana.

Hana did have a great play date today when two kids from the neighborhood came down to visit and Hana was VERY excited and happy.

In medical news, Hana was taken off of the drug Zantac altogether because the pharmacist felt like it was the only way to really see if this drug is what is causing Hana’s elevated liver enzymes. I don’t even know if the Zantac was really working. The exciting news of the day is that the IVIG therapy seems to be working. The very basic report I heard was that of the ten antibodies that were high, six of them have come down. I don’t know much more than that but it is good news!

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Happy St. Patrick’s Day!

120 days in the hospital, 101 days post-Berlin Heart, 93 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.