Overdose

Thursday night I was drawing up Hana’s medicines for that night and the next day. I was a little distracted because I was setting up the evening meds so my mom could easily give them. I was also in a slight hurry because Paul and I were going out to dinner. I grabbed the Omeprazole (to treat Hana’s stomach while on some harsh meds) and the Amlodipine (a calcium channel blocker used for high blood pressure) out of our medicine refrigerator. They are in the same size bottle and virtually the same color. I drew up 5mL of Amlodipine and two syringes of 1.5 mL each of Omeprazole. The problem was that it should have been opposite. Hana gets 5mL of Omeprazole and twice a day she gets 1.5mL of Amlodipine.

That night my mom unknowingly gave Hana 1.5mL of Omeprazole. The next morning I always start with Omeprazole as Hana’s first medicine. It always makes her gag and is more volume than other meds and I don’t want her throwing up her other meds from gagging, so I give it first. She didn’t even flinch when she got the 5mL of medicine. Then I have her the Tacrolimus (anti-rejection med). Then I waited about 20 minutes and gave her Valcyte (to prevent cytomegalovirus), diltiazem (protect coronary arteries, lower blood pressure), and then I picked up what was supposed to be Amlodipine and I thought it looked a tiny bit yellowish. When I gave it to Hana she gagged and then I knew I had made a mistake. I knew it was a big mistake as I knew Hana was already on the highest dose of Amlodipine she could get. I also know that too much of a blood pressure lowering medication is a dangerous thing.

I immediately called Stanford. They started discussing what to do and had me take another blood pressure (100/62). Then they asked me to call Poison Control to find out how much was a toxic level. So I called Poison Control (and was glad the number was already programmed into my phone) and they said they send people to the ER if it’s 0.3mg per kg (that’s about two times Hana’s dose) and Hana got 0.45mg/kg. I was already gathering stuff to go to the emergency room at Kaiser while the pharmacist finished talking to me. He did say she would probably be fine but I needed to go in. Then one of the doctors from Stanford called me back to discuss the plan. 

My mom and dad are visiting but Paul was not at home and had the car, so we hurried out the door with Hana to walk to the ER. It’s only five blocks (but a few uphill) but it was pouring rain. I kind of ran and pushed the stroller and I arrived at the emergency department drenched and out of breath. Paul had gotten there a minute before us. Hana was just fine through all of it. My mom and dad arrived a few minutes later just as they were taking us back.

They got Hana set up in a code room and took her vitals. Everything looked great. Hana was not happy about being there but adjusted like the little champ she is. The doctor got all his info and went to call Stanford. They decided to monitor her in the ED a bit longer and then move her up to the pediatric ward until 8pm that night. They decided against transferring her to Stanford because it just didn’t seem necessary. They brought in a dose of atropine (the antidote) in case they needed it. Of course they wanted to get an IV started in case they needed it and I requested the pediatric team to come and start that. While we waited, the attending physician from the pediatric ward walked in and that’s when we got the greatest, serendipitous surprise.

In walked the doctor who said, “you probably don’t remember me …” but I said, “Of course I do!” I turned to my mom who was next to me and said, “This is Katherine Herz. She is the one who ordered the first chest x-ray that showed Hana’s enlarged heart!” I wrote about Dr. Herz in “The First Thank You“. She seemed excited to have the opportunity to care for Hana again and had been following her progress. It seems that the first incident with Hana also made a big impact on her and she said she used Hana’s case all the time as a teaching tool. I was very glad to have the opportunity to thank her in person. I don’t think a week has gone by where I haven’t thought about trying to send her a meaningful thank you note, but she was hard to track down. 

We chatted a little bit about how Hana was doing and what was going on. I asked her what made her order a chest x-ray because so many doctors told me that most pediatrcians would not have done so. She told me (humbly, I might add, saying it was the great training she got at UCSF) that it was February and she had seen sick kid after sick kid. Then Hana came in with a persistent cough and a little vomiting, just like lots of sick kids, but the first red flag was that Hana didn’t have any other symptoms (runny nose, sneezing) and was nursing so little that I had to pump afterwards. She said something wasn’t adding up. The second red flag was when she listened to her heart it sounded “distant” and she couldn’t hear anything on the left side at all. That’s when she was worried it was something pretty serious. We are grateful to her, who knows how badly Hana would have gotten before she was treated. If it had gotten much worse Hana might have had a stroke or even worse.

Then a bunch of nurses showed up to start the IV, which was the worst part of the day. It ended up not being the pediatric picc nurses (their first try failed) but our fantastic ED nurse who got the IV started. Unfortunately it was in Hana’s foot so she wasn’t allowed to stand the rest of the day. Then Hana got transferred upstairs to the pediatric ward where we waited out the rest of the day. They kept Hana hooked up to the monitor for O2, heart rate, respiration rate. They took her blood pressure every 30 minutes. I was able to give Hana the rest of her anti-rejection meds but they held her enalapril (of course, it’s another blood pressure med), lasix, diltiazem, and other non-essential meds (about five more). Nothing significant happened. Her blood pressure never got below 91/52 (which is actually the range they want her in).

The rest of the day we ate hospital food, played with Hana, watched cartoons. Paul worked. Dr. Herz came by again to chat some more. The resident checked in with the doctor at Stanford at 7pm and finalized the discharge instructions. At 8:20, 12 hours after the accidental overdose, we were walking out of the hospital.

One of the NPs from Stanford called me right before discharge to see how I was doing. I thought that was great. Not one person I encountered had even a hint of criticism towards me. Everyone makes mistakes and has made mistakes. At least I caught it so early. As for my own reaction, I was so focused on getting the situation treated that I didn’t have room to feel bad. Later, I did feel bad, especially when Hana was getting her IV and was crying and screaming. I felt bad my parents had to spend a whole day of their visit in a hospital. But I was surprised how little I felt bad. I kind of felt guilty for not feeling more guilty. But I think, by far, the main feeling I experienced was Alarm. I was very alarmed, even frightened, that I would make such an error. I think most people who know me would say I am always on top of these things and I’m very responsible and cautious. But even I make mistakes. So the real lesson is humility. Be kind to others who make mistakes, be kind to yourself and come up with methods to prevent making future mistakes.

We are grateful to the great team of people at Kaiser and Stanford looking out for us! It was really great to see Dr. Herz, the silver lining in all of this!

Climbing

This post is long overdue. I’ve been wanting to post about something really special that happened last week, but I’m waiting on something, so I’ll just leave you in anticipation. In the meantime, I thought I’d better send out an update.

It’s been a busy couple of weeks. My sister and brother-in-law were here the first week of May and we had a really great visit, which included the excitement of the News Media Event. I’ll post more links as they become available. We’ve gotten some nice feedback so I’m really glad we decided to do it and I really hope it helps raise awareness on the importance of organ donation.

Hana also had another IVIG treatment on Monday and Tuesday of their visit. They had to poke her four times to get their blood draw and to get the IV started. It was awful and I hated seeing the fear in Hana’s eyes, it really hit me hard this time around. They ended up putting the IV in her foot and then another, better IV in the other foot. So, Hana was not able to walk or stand for 24 hours, or even leave the room which was HARD. Thankfully, their were three adults, full-time, to keep her occupied!
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Getting silly during IVIG

We already got the results of her IVIG therapy and she dropped another antibody (If I’m even saying that correctly). So now she is down to 2, which I guess mathematically means she would not be able to accept an organ from 22% of the population because of her antibodies.

Weekends here are generally slow and boring. The nurses are staffed short so they are usually a little too busy to take Hana outside, maybe she can go out once a day. Strangely, we get most of our visitors during the week too so it makes for long days on Saturday and Sunday. It is nice to get visitors to break that up! Sunday (Mother’s Day, we will double celebrate next year when Hana is not in the hospital) and Monday felt like really, really long days. Then on Tuesday we started to get visitors all the way through Saturday.

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A little bored!

Thank you to everyone who visits, it really makes a difference!

Hana continues to go to the music concerts on the adult side of the hospital. It has been really great. She has started to squeal with delight when she realizes that we are walking in that direction. Her favorite performer is still Jeff, the guitarist that plays at preschool on Wednesdays. Sometimes we see him at the concerts in the audience and Hana will stare at him like he’s a rock star.

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Staring at Jeff the guitarist.

One of Hana’s nurses has taken it upon herself to make cloth wraps with velcro to use over Hana’s abdominal dressing. This is to replace the ace wrap that we’ve been using. We are experimenting with what she’s made so far and she is perfecting her pattern based off of our experiences. I am so grateful and honored that she is taking so much time and energy out of her personal life to do this. They have been working out great! Jenny is amazing!

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Replacing the Ace Wrap!

The big news of the week (other than the special announcement that will come in another post) is just that Hana has been climbing everything. She is climbing up her crib, on chairs and stools and on top of the table and on the stuffed chair and couches and up the slide. It was inevitable. I’m glad she is climbing but I can’t turn my back on her for a second! Because of all the blood thinners Hana is on it is really dangerous if she fell, not to mention her pump that goes into her heart! But it is really fun to see her go at it, I fully support it as long as we can keep her safe and she doesn’t irritate the cannula insertion site into her chest.

May 9, 2016

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I also learned how to give Hana her Lovenox shot, which is just a subcutaneous injection, so its not a big deal. I want to be able to give it if the nurse is really busy, especially at night and I want to get Hana to bed.

The waiting has been getting to me a little bit. It takes vigilance on my part to continuously adjust my attitude about it. We are stuck here and we are waiting for a heart, but it doesn’t mean we can enjoy every day and every minute, not that I don’t, but I don’t need to be getting down because we’ve been waiting for five months. That’s right! Hana has been on the transplant list for five months, as of today.

Here are a few more pictures of some activity!

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Cinco de Mayo celebration

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Watching the ants go marching one by one.

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178 days in the hospital, 160 days post-Berlin Heart, 152 days on the transplant list.

On Local News Tonight

Today a couple of news stations came to cover a story on Hana. Surprise! We wanted to do this in April, for Donate Life month but the scheduling didn’t work out. The hospital’s media relations organized everything and it included an interview with Hana’s primary heart failure/transplant cardiologist. I’ll post more about the whole experience later, but for now, I just wanted to put the word out for anyone that wants to try to watch. I think you can stream it live and I believe it will at least air on the five o’clock news but likely with additional air time.

Channel 2 – http://www.ktvu.com

Channel 7 – http://abc7news.com

Our motivation to do this was to raise awareness about the importance of organ donation.

Putting Your Heart On Ice

Saturday morning I had the rare pleasure of driving in the car. I was listening to West Coast Live, which is a local San Francisco radio show that is broadcast on public radio. They were interviewing Eleanor Coppola (yes, the wife of Francis Ford). One thing she talked about was something Francis had read in a book and it was the phrase, “Putting your heart on ice”. She described it as meaning a time in your life when you are frustrated and you aren’t doing what you want to be doing, what you were meant to be doing and you were just slogging through, maybe to just make it through a difficult phase.

Some would say that right now we are “putting our hearts on ice”, as we wait. I’ve heard people say that our lives are “on hold” until we can get back home. Certainly, this is true in many ways. But, life goes on no matter what and we’ve tried to live it as fully as we can, even when we are stuck in a hospital. Or, you could we have the privilege of being cared for by an amazing group of nurses and medical staff at an amazing hospital on an incredible life saving device. Because of this, Hana has a chance. We get to watch her grow and develop and really be an incredible joy in our lives. So, our lives do have a lot of joy. Maybe we are exactly where we need to be.

It also really struck me how ironic the phrase “putting your heart of ice” was in that it is exactly this that will happen when Hana gets her chance, her gift of life. A donor heart for Hana will arrive on ice. I hope we can always honor that gift with lives full of joy and gratitude.

It is with gratitude that I’d like to show a couple of things, that Hana has received lately. A couple of nurses made some things for Hana (and one thing is in the works).

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Custom made window cling!
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Hot air balloon decoration!

Then, I’m very excited because an artist I first discovered years ago in Sackets Harbor, New York, when my sister lived there, heard of Hana’s story. She was inspired to paint one day and realized she was painting Hana. She shared this painting with us while it was in the works, but it recently was completed. Its been very exciting and we are really in love with the final work! I feel it really captures a certain part of Hana. When I showed Hana a picture of the painting, she said, “Hana! Hana!”

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by Eugenia Mancini Horan

To see some of her other work, you can follow her Facebook page, The Art of ima.GINA.tion. Or you can visit her website.

Lastly, Hana is still doing great! She did slip and fall and hit her head the other day. This is always a big deal because she is on so many blood thinners. They do neuro checks every hour for the first four hours and then every four hours. She is fine. Tomorrow she has another round of IVIG therapy. She had two play dates in the last week that really made her day! Monday, another one of my sisters and her husband arrive. We are really looking forward to the visit!

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164 Days in the hospital, 146 days post-Berlin Heart, 138 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.

Outside

Things have been moving along steadily. Hana seems a little too tired during the day. They say this could be from withdrawal, as they are very, very slowly decreasing her Ativan and Methadone doses every other day. I think it is also because her sodium has been a bit low. This happened before and once she got sodium replacement, she perked up. Unfortunately, I think it could also be from boredom and depression.

We haven’t been able to get Hana out of the room as much as I’d like. We have to get a nurse to go with us and their patient load is not always such where they can easily get away. Also, with the holidays there are many programs and staff that are not around for activities and services that are normally offered. Hopefully that will all change this coming week.

Today we got to take Hana outside for the first time in more than six weeks. It was only to just outside the main entrance of the hospital but I do think she enjoyed it. She and Poppy also got to see each other for the first time too. While I thought it might be an emotional reunion, it was not. Neither seemed to impressed with the other. Oh well!

We also got to take Hana to see the toy trains, which she really loved. Later in the day we got to take her to the playroom. I think the excursions do her good. I also think familiar visitors help as well. I’m sure Hana gets tired of seeing my face and welcomes the change.

This week Paul and I should get our parent training on the Berlin Heart. That way, we can take Hana out of the unit and around the third floor without a nurse. That will give us more freedom and independence and hopefully will help with Hana’s boredom and depression. We’ve been doing our best to keep her active and engaged in the room but sometimes the same four walls just make you crazy.

Hana’s fibrinogen level has been elevated. They have also noticed more white deposits on her Berlin Heart, so they’ve started to keep a much closer eye on her. They are also watching closely to see if she has any signs of having a stroke. The alarm on the Ikus, which is the huge box on wheels with the laptop on top and basically runs everything going on with the Berlin Heart, has been going off like crazy the last couple of nights. So we are not sure what is going on with that. Hopefully everything resolves itself quickly.

Today I got to go on a nice jog with Poppy. It really improved my mood and I am very grateful for the opportunity! Thank you to all the people who help make that happen. There are many people who may not even think they are helping make it happen, but you are! I think we rely on each other more than we realize or even appreciate. This is something I think about alot especially as I am jogging. There are so many people who have helped Hana. Medically speaking there are the medical professionals who have committed to education and training and their families that have encouraged and supported them. There are medications and equipment and supplies and all those things came as a result of so many people’s effort. Then there are all the people who have supported us with cards, packages, texts, emails, meals, notes, kind words, etc. We are so grateful.

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Day 46 in the hospital, Day 28 post-Berlin Heart, Day 19 on the transplant list.

It’s Hard On My Heart

Hana had a good day. They increased the amount of breastmilk they are giving her and they decreased her dopamine. She was very agitated throughout the day and they did end up giving her a small amount of sedative. She would wiggle around and try to pull out her tubes or rub her eye. She had a good chunk of time were she was alert and we read her stories and talked to her. She even tried grabbing at her hanging toys or the pages of her books.

The evening plan is to do a couple of CPAP trials in preparation for taking out her off the ventilator in the morning. That being said, her heart started being erratically but her blood pressure was ok. Doctors came in. They did an EKG. Meanwhile, they were cracking open a baby’s chest a few rooms down and installing an ECMO device/machine (an emergency procedure to take over the work of the heart). It felt tense. I started to cry. Again. It reminded me how hard this whole thing has been on my own heart. I love Hana so much and it hurts so much to see her suffer. Sometimes she tries to cry (but she makes no noise because of the breathing tube) and her face has the look of pain on it that breaks my heart. I want to hold her and cuddle her and soothe her. But I can’t, yet, and it hurts my heart.

I love this baby (and her heart).

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