Heart of Hope

You want to hear something crazy? There is a guy, a couple years younger than me that went to the same small, rural high school in Pennsylvania. He and his wife had two kids and when the younger one was six months old they were told she needed a heart transplant. She eventually was put on the Berlin Heart and got her transplant (it was actually her second transplant). It’s crazy only because if you knew the rural area where I grew up and how many kids need a Berlin Heart you would not believe the odds. Unfortunately, about seven months after the second transplant their daughter died of sudden cardiac arrest. I encourage you to read the story, I can not do it justice here. My heart aches when I read the story. I’ll be honest, it is also terrifying.

In honor of their daughter, they created Heart of Hope – The Caralynn Titter Foundation whose mission is to provide support for families dealing with pediatric heart transplants. This Saturday (that’s tomorrow!) they are doing a fundraiser race for their foundation – the 2nd Annual Heart of Hope 5k & 1 Mile Family Fun Run in Newark, Delaware. My very oldest (not eldest but most number of years) friend, Erin has organized Team Hana and if you’d like you can donate to their team to support an excellent cause (because if you are reading this blog you probably understand how important it is to support families dealing with pediatric heart transplants!) click this link.

Thank You!

In Hana news, its been a good week. Things feel like they might be settling down instead of just trying to keep our heads above water. Hana had another cardiac cath and biopsy on Wednesday. The results are good – pressures are good, same as last time, and biopsy results are 0! I am so relieved! I always have a build up of anxiety a few days before.

Hana even gained back some weight! Her eating tends to have sporadic results. One day she loves her smoothie and the next day she won’t touch it. One day she wants to eat cream cheese and the next day she just wants strawberries. I guess she is kind of a normal toddler. Lately she seems to want fruits, veggies and water which would ordinarily be wonderful but I keep trying to push the high calorie foods as much as possible.

Lastly, Hana’s sleep patterns are starting to really wear on me. She has always been the kind of baby/kid that needed a while to settle into sleep but it has gotten bad. Naptime is not usually too bad, 30-60 minutes (unless grandmom is trying to get her to sleep in which case I just hear lots of noise and laughing coming from Hana’s bedroom). Bedtime is very challenging. Hana tosses and turns for one to two hours before she falls asleep. By the time she is asleep it is so late and I am so tired it is hard to get anything else done. I’m wondering if what’s causing this is the steroid that Hana has been one since her transplant.




 

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!

Thank You Nurses

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you nurses, everywhere!