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.

Best Vacation In A Hospital

One update from me, Kathleen, – the backup Ikus arrived on Wednesday and we have slowly been given back all of our out-of-the-room privileges.

Below is an entry from my sister Therese, from her visit with us a week ago.

How do you tell people that your vacation at a hospital was an amazing adventure? It was more fun than my recent day trip to Disneyland! I had soooo much fun with Hana that most times I forgot that it was all consumed inside a hospital. Yes I was reminded that Hana has special needs requiring a watchful eye to make sure she does not sit down, kinking the berlin heart. But adults all over the world are watching children making sure the toddlers does not venture too close to stairs or pools of water. Of course there were times I seized Hana’s hand abruptly to prevent her from wandering more than six feet from the Ikus. But I have seen parents in public briskly grasp their child’s arm to prevent them from crossing a busy street or clutch them tightly into their arms to keep them safe. And of course most followers of this blog are aware that my last couple of hours in my visit were scary and full of panic when the Ikus stopped working. But have you seen the YouTube videos of parents who have witnessed their children in close call incidents? Just the other day a friend told a time her daughter was about to stick a finger into a socket. Hospital or not guardians of children are protecting and caring for their children. Plus Hana’s heart is sick, but her giggles and smiles could fool anyone into believing she was just another toddler learning the world around her.

Speaking of giggles…..My niece’s laughter stole my heart every time we played one of her favorite games. Hana would heave herself against a couch, race into my hugging arms, then repeat this with wild bouts of squealing. There really is nothing sweeter than embracing a little loved one! This was one of many things we did to amuse Hana while entertaining ourselves with her laughter. Do you know how amusing it is to run down a hallway wheeling a 200 lbs machine alongside your sister who is pushing her daughter on a tricycle? Then after one breathlessly lap we switched roles and did it again!?!? Us sisters were sweaty, tired, but most of all delighted that Hana enjoyed her cruise around the third floor passing by the onlookers puzzled to see such an event in a hospital! We had a playdate on the weekend with a four-year-old, two-year-old, and their mothers. Our guests hosted the first tea party for the three children. There was no tea, but some juice, mini muffins, and lots of clanking of the cups on the tiny pink saucers. The “playground” which was a slide my sister bought to amuse Hana in her room, was set up in a seating area. The four-year-old girl loved the slid, but would patiently share a turn with Hana. The shy little boy had fun being chased by his mother as the little girls rolled a ball to each other. It was so much fun Hana fell asleep almost instantly for her nap!

For Kathleen and Paul I know it is hard for them to live in a hospital and raise Hana in such an environment. But what I loved about this trip is the quality time with Hana. I did not have to exit the hospital into the real world full of errands or shopping. Instead I got to spend all of Hana’s waking moments getting to know her. I now have a better understanding why parents make such a big deal about their child’s first steps and words. I was lucky enough to witness my niece who was learning words in sign language. It truly is AMAZING to watch these little human beings think and grow! During my visit Hana started signing new words every day! Our excitement to watch her learn words was overshadowed by the pleasant thrilled look on her face that we understood her! If you didn’t pay close attention to her hands you would miss a new word she was learning! The moment literally happens in a blink of the eye! Just like children who do not articulate their words such as “Dada” for “Dad”, Hana’s sign language is not perfect enunciations of the words. Her sign for “water” is only her index finger to her chin rather than three fingers. However every time I drank my water from a bottle or the fountain she would make her sign for “water!” But she is so smart and learning so fast! She was even saying a few words and signing them too!

Speaking of…speaking and signing words, my favorite pastime with Hana involved some babbling, lots of signing, and a whole lot of smiling! On the third floor of Lucile Packard Children’s Hospital Stanford, Easter came early for the little supergirl in homemade kimono outfits. Instead of hunting for eggs Hana searched for colorful rainbows, fluttering butterflies, and twinkling stars! Isn’t that every little girl’s dream scavenger hunt?!?! Once, sometimes twice a day we would tape pictures to the walls so Hana could literally chase rainbows! She would walk down the hallway enthusiastically babblings and laughing. Hana would eagerly say and sign words for the treasured items she found. It was incredible to watch! Staff who know Hana were excited to see her doing things that were impossible a couple of months ago. Other patients and families observed in amusement as two to three grown adults chased a toddler, rolled the Ikus, and taped drawings to windows, furniture, anything within a toddler’s reach! But all spectators could not help but smile at the girl with the pigtails!
There are always moments of reality that remind me of Hana’s delicate heart. I know Hana lives in a hospital and it waiting for a heart transplant. However I cannot help but giggle like I was five again when I replay the videos of our adventures together. During my trip to California I found my inner child not at Disneyland but with my Hana. I find myself constantly looking at the pictures from my trip filling my head with happy thoughts that could make me fly like Peter Pan. This trip to the hospital was filled with love, laughter, and a little girl that has the magic to make any visit into an amazing vacation!

Love Aunt Therese

116 days in the hospital, 97 days post-Berlin Heart, 89 days on the transplant list.

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Stuck In The Room

So, since they don’t want to take any chances with the backup Ikus, while we wait for a new backup Ikus, Hana can not leave the room. This has been difficult and she was pretty cranky at times today. Health wise, she is completely like she has always been.

Of course, many people stopped by to see how we were doing. We were commended for staying so calm and collected. Really, I think that’s because the initial nurse was so composed and everyone else just took her lead and knew there parts and did it. I know I’ve complained about the nurses on 3 West last year but almost all of them have been really great and yesterday they proved they can also be exceptional.

I am honestly a little embarrassed or uncomfortable by all the praise of being calm. I kind of over react to this by nearly saying, “it was no big deal.” But it was a big deal and it was handled appropriately and swiftly and confidently. I never felt like Hana was in any great danger, there was potential for danger, but again, this was eliminated by a seamless emergency response. Now, I’d love it if other people, especially nurses, could chime in on how we can show how much we appreciate what they all did. Are words enough? A thank you card? Maybe put a sign on the Hana’s door?

But anyway, we picked a good time to be stuck in the room. We are lucky that we have lots of great activities. One of my aunts sent a huge box of activities and ideas for activities. We also received a very cool “busy book” personalized and created for Hana by Little Lennon Busy Books. So, we were able to keep busy and active on the slide Hana has in her room. We also just redocorated, see the photos below. This is how we bring the outdoors in and keep from going crazy. Therese and I did a lot of work making the room look like it does!

One more quick mention of the broken Ikus – we (okay, probably just me) may have pushed it to its limit (well past its limit)! It is not meant to be plugged in and out so often. Berlin Heart has requested the exact power cord and power strip so they can try to recreate it back in Texas (where their U. S. home base is.)

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Emergency

First, all is well now. Today was my sister Therese’s last day here. We had a lot of fun, unfortunately her time her kind of ended on a dramatic note.

The pink Ikus has been problematic, as I’ve written previously. Today, Berlin Heart looked at the log files sent over the weekend and the assured the team that everything was working fine even though we were getting the “battery discharging” alarm. They instructed us to continue using battery power despite the alarm and to pay attention to the lights that show how much battery life is left. They said that because we plug in and out so often it is messing with the alarming system and we should actually be trying to use up the battery power before plugging back in. So, this is what we did.

We had some great scavenger hunts for butterflies and rainbows on the third floor. The nurse accompanied us to the trains on the first floor. In the late afternoon we took out the tricycle and did another scavenger hunt. The ten minute alarm sounded. Then the “discharging battery” alarm sounded and we silenced it as instructed and continued with our business but watching the battery lights closely. Then the nurse found as to accompany us and help push the Ikus. A few minutes later the Ikus started making a chirping noise. It was hard to tell where it was coming from.

The nurse said we’d better go back. We got held up by the feeding pump but we hurried back down the hall to the room. The nurse checked her pump and noticed it was not filling and emptying which means that the pump stopped. That’s right, the pump was no longer pumping Hana’s blood. The Ikus still sounded just like it always does, like an air compressor, but now it was chirping. The computer monitor no longer had a wave form showing the pumping activity.

The nurse, cool and collected, pulled out the hand pump, attached it and started pumping manually. Now, by this time another nurse or nurses had come in and out. I actually called out, “we need to turn on the backup!” One nurse monitored the filling and emptying of the pump so she could instruct faster or slower hand pumps. One nurse was starting the backup Ikus that is plugged in outside Hana’s room at all times. Another nurse started helping me get Hana hooked up to the monitor so we could see her heart rate, pulse, oxygen level, respiratory rate, blood pressure. Paul was calming Hana and we were playing the iPad.

Two fellows showed up and one took over hand pumping. The other started monitoring Hana. The attending cardiologist (and Berlin Heart expert) must have run because he seemed a bit out of breath. The nurse practitioner that specializes in the Berlin Heart showed up (the last two we had seem ten minutes prior). Someone brought the crash cart. Then, a lot of people started showing up because they got a emergency alert text (and it said we might have to be prepared for ECMO!!!! Yikes). A nurse, Doctor and fellow from the CVICU, a respiratory therapist and a bunch of other people who I don’t know all showed up.

Hana was hooked up to the backup Ikus very quickly. Everyone wanted to look at her pump to make sure there wasn’t an increase in deposits (a period of low flow can cause an increase in deposits). To make this long story short, they are going to monitor her deposits more closely overnight and we are not to unplug the backup Ikus until the new backup arrives tomorrow. The pink Ikus was able to be made into the temporary backup (with some tinkering). The people at Berlin Heart said they have never, ever heard a chirping noise, ever, so this will be a new one for them. Hana is completely fine and seemed more annoyed and maybe a bit scared by all the people in her room. I was pretty calm and not too worried because I knew, from my conversation with the cardiologist yesterday, that Hana’s heart would do just fine if the pump stopped. Still, you want what is supposed to be working to work! Paul was calm as well. Therese did great.

I have to say that our nurse was amazing. She had good sense and was poised and professional. She seemed alarmed, but not at all ruffled.

In hindsight, I wish I had requested we switch to the backup when we first started getting the dishcharge battery alarm. I think the allure of the pink Ikus clouded my judgement. If it had been a plain, boring Ikus I know I would have wanted to switch it out immediately!

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