Heart On The Edge

Posted on by katmeander

First off I’d like to address the title of this post, “Heart on the edge” is referring to my heart, not Hana’s. The last 24 hours have involved a lot of time spent at the hospital at Stanford, both planned but also unplanned.

Over the last week we have been potty training Hana which I will say has been much harder than I thought but also much more possible than I thought. I’m not sure how those two thoughts coexist in my brain, but they do. With one of Hana’s medications causing GI upset and a sudden and real urgent need “to go” I wasn’t sure if we would have success. But I was determined and she needs to learn some time and honestly I really think she is very ready. The only reason I’m saying any of this is because we pretty much haven’t left the house during potty training week.

This is why I was very surprised when Hana threw up late yesterday afternoon. We just haven’t been anywhere to pick up a stomach virus. So I thought it was a fluke. Then two hours later she puked again and I started to fear she really was getting a stomach virus. So I called in and was very surprised that they wanted us to bring her to the Stanford ER (no rush but they definitely wanted her to come in). I really thought they would just check in with us over the night to see how much she continued to vomit and if she could keep her medications down. But no. So we quickly packed a bag of necessities just in case we had to stay a couple days at the hospital.

What complicates all of this is Hana already had a Cath Lab/biopsy scheduled for the next morning. I had already talked to the Nurse Practitioner about our pre-op instructions and they always check in to make sure Hana has no symptoms of being sick.

At the ER they get us back to a private room and the cardiology fellow comes to do an exam and an echocardiogram. I might also mention that since her last vomit Hana sucked down 6 ounces of Gatorade and was clawing at Paul’s sandwich like a starving animal. She also was climbing all over the chairs in the waiting room.

After the echocardiogram, the attending heart transplant cardiologist walks in and does an exam and looks at the echo and talks with us. Hana is looking very well and I almost wished she’d act a little sick so I don’t seem like I was being dramatic with her episodes of vomit. They explain again why they wanted Hana to come in – dehydration can be dangerous for her, not being able to keep anti-rejection medications down can be dangerous and also, most scary, unexplained vomiting can be a sign of heart failure or rejection.

Ugh. This is our reality of the world we live in. It doesn’t mean that Hana is going to ever experience heart failure or rejection and I don’t live that way, but it does mean that it is always a possibility that must be considered. My heart is on the edge every time I again must consider this again. Why am I wasting time potty training when we could be out and about experiencing life? But I don’t live life this way, nor do I take it for granted like everything will now be “normal” and we never have to worry again, that would be denial. It’s a balancing act and my heart is always on the edge.

After getting blood work in the ER and some time spent observing Hana after she ate and drank, everything looked perfect and they let us go home with strict orders to return right away if she threw up again. They were kind of pushing to just admit Hana overnight just in case she kept vomiting they could give her IV fluids and it would save us a trip back to the hospital in the morning for her Cath Lab/biopsy, which they really didn’t want to cancel (she can’t be dehydrated for the procedure). But Paul and I really didn’t want to spend the night back in the hospital. So, at 1am, we went home.

We got home a little after 2am and after a few hours of sleep Hana and I left for the hospital at 7:30am. Things when smoothly for the preparation and during the actual Cath Lab procedure. I went back to the PACU afterwards and Hana was still out cold. They decided not to do the usual echocardiogram post-procedure because she had just had one the night before (the risk was low of a complication they might find on an additional echo).

One of Hana’s transplant Nurse Practitioner’s came to the PACU to do an exam, as usual. Hana was just starting to wake up. Unfortunately, the NP heard a gallop – an additional heart sound. Hana has had this before, with her original heart and it is often(? Or usually?) a sign of heart failure or rejection. I felt cautiously crushed. Now this gallop on top of unexplained vomiting was starting to look concerning, despite everything else looking good.

My heart is on edge. So the NP is trying to get a hold of the attending cardiologist from last night and in the meantime another transplant cardiologist is headed over to listen and the NP talks about moving us out of the PACU and getting an EKG and an echocardiogram anyway. Hana is wide awake and goofy in her post-anesthesia bliss and she is mostly concerned with eating nearly four cherry popsicles and watching cartoons.

The cardiologist arrives and does an exam and listens carefully. The gallop is gone. She explains that sometimes anesthesia wearing off can cause this or something like that but I don’t listen too hard because I’m too busy feeling relieved. They review the echocardiogram and a bunch of other things (like the pressures in her heart that they measured in the Cath Lab which were great) for awhile and again ask me to explain the vomiting episodes. But in the end everyone feels very confident and relieved that all is well and the cardiologist just reminds me that I can always call any time night or day for any reason even if it’s just, “something just doesn’t seem quite right.” Tomorrow we get the biopsy results that measure rejection.

As we are getting ready to leave, Hana’s primary transplant cardiologist shows up just to check in to see how we are doing after all the craziness. I always appreciate that. He reminds me that sometimes little kids just throw up for reasons we never know. Yup. I’ll take it as a fluke (especially because now I don’t have to bleach everything in my house to kill the germs).

Now I’m tired and Hana was really tired. We took off her diaper that we went back to for all this and I think she was happy to be rid of it. It’s like she’s just picking up where we left off in potty training. I’ll take it, happily.

One year ago

Posted on by katmeander

On this day last year, December 7th, Hana was getting her Berlin Heart. I can’t believe all that has happened in the last year and we are so incredibly grateful to be where we are now – HOME! Not in the hospital. I do wish we were spending time with some family for the holidays but we will get to do that soon enough!

I have good news and sad news. First, the good news is that Hana gained 100 grams when she was weighed last Wednesday! Everyone was quite happy. Let’s just hope this continues as Hana finds her own, new weight gain curve.

The sad news is that our friend Zack passed away on Wednesday. He had a double lung transplant in October and ultimately it did not go well. After being on life support, ECMO, for weeks he decided he was done fighting. It seems that everyone who knew him is heartbroken. I know we certainly were and still are. Zack was a good kid who was dealt a crappy hand, although he was blessed with devoted and loving grandparents who were also his legal guardians.

Zack’s family lives outside of Tucson and his grandfather, Jay, moved with Zack to the Ronald McDonald House to care for Zack while he waited for donor lungs. Jay was one of Hana’s favorite people at RMH and he has an old-school, east coast, unpolished chivalry about him that is friendly, thoughtful, respectful and decent without unnecessary refinement. As you can imagine, this has been heartbreaking and devastating for Jay and his wife Patty. Not only did they have to return home without Zack but all of this, I’m sure, has been a financial strain for them (they are both still working). If you feel moved to do so, please consider contributing to their GoFundMe: https://www.gofundme.com/f4e4kyus

Rest In Peace, dear Zack and may all who loved you find peace too, in their own time. I hope Jay and Patty don’t mind me sharing this photo:

Zack and Jay
Meanwhile, at the Yago house, we are getting ready for Christmas. So far, Hana seems very excited about the Christmas tree and Christmas songs. She’s been enjoying taking some of the Christmas ornaments off the tree! We’ve been busy making some of our own homemade Christmas ornaments too. We are trying not to go crazy with gift buying, but it’s been a little hard after giving and getting nothing last year.

Speaking of Christmas gifts, if you are looking for a nice artwork gift to give this year, our friend Gina who painted the portrait of Hana, has a nice selection prints and original artwork for sale for a limited time. Check it out: http://eugeniamancinihoran.bigcartel.com


I know I am planning to get a print! Gina has been a great, supportive force in our lives.

Last but not least, I want to share a few photographs a friend of ours took for a project several weeks ago of Hana and I at home.

hana-02
Photograph by Francine Zavala
hana-04
Photograph by Francine Zavala
hana-07
Photograph by Francine Zavala
hana-010
Photograph by Francine Zavala
hana-022
Photograph by Francine Zavala
hana-038
Photograph by Francine Zavala

Here’s a photo from my iPhone:


 

Six Months Out!

Posted on by katmeander

Yesterday marked six months since Hana’s heart transplant! This milestone means some good changes like less often clinic appointments, less medications (slowly we should wean more off the steroid which means she can drop several other medications when she’s off the steroid) and travel restrictions are lifted (except no airplane travel during flu season). It also means that somewhere out there a family is six-months into the mourning of their little one, which I imagine is even harder during the holiday season. They are never far from my thoughts. We are so incredibly grateful to them for the obvious reasons but especially because this holiday season we get to spend it with Hana at home. It was around this time last year that Hana was admitted to the hospital with a collapsed lung. She spent the week before Thanksgiving all the way until Christmas Eve in the CVICU and most of that time she was intubated and sedated.

This Thanksgiving was GREAT! It was really wonderful to be out of the hospital, have a real dinner and celebrate being THANKFUL! We spent it at home with a good number of friends. Hana did not eat much, which has been a problem over the last month.

Hana has lost 1.5 pounds over a month. She eats, but not enough. At her last clinic visit her weight held steady but overall she has lost more than they’d like. It sounds like if she doesn’t start gaining very soon she may need to get the feeding tube again. This has all been stressful for me and we spend a lot of time eating or trying to eat. One thing I did after her last clinic appointment was I stopped giving her milk for almost two days. She ate significantly more! I’ve tried this before but after an hour of no eating I would give her milk out of desperation. This time I managed to get her to eat scrambled eggs with lots of chopped pickles and cheese and it set the day off right (too bad this doesn’t work every time). We will know on Wednesday at her clinic visit if she’s gained weight. It’s stressful! As any parent who has had a problem eater (versus a picky eater), failure to thrive or had a feeding tube for their young child, eating issues are almost always very stressful.

Speaking of stress, I think I have not posted recently about the stress of Hana’s weight loss because I’ve been thinking about our friend Zack from the Ronald McDonald House. I couldn’t bring myself to write about weight loss when Zack was fighting for his life. Zack had a double lung transplant and it has not gone well. After his transplant he got really sick and they removed part of his lung. Then he suddenly got very sick and they removed the rest of the lung. Since then he has been on ECMO, which is life support that oxygenates his blood so his remaining lung doesn’t have to. He has been relisted for another lung transplant and will remain on ECMO until that happens. The problem is the wait for lungs is usually long and the time a patient can stay on ECMO is short. So please pray or send positive thoughts for our friend Zack. If you feel moved to do so you can send an e-card to Zachary Hepburn at the hospital: http://forms.stanfordchildrens.org/forPatientsVisitors/cards/index.jsp

Thanks!

We are living life and getting out and about! I feel like I am always on the go. Between appointments, blood draws and pharmacy visits I am trying to get Hana out doing as many things as possible that she missed, as long as she enjoys them. She is the age where she seems to enjoy a good number of things. I do have to push and encourage a bit more independence as she is very used to having me by her side almost every minute of the day. She still likes to be carried everywhere! But overall she is doing great!



Pickle soup

Surgeon Hana!






She still loves the beach!


Lastly, I’d say that we are trying to keep Hana healthy. This has been challenging now that it’s flu season. Every cough or sneeze I hear around me sets off an alarm. Bad sounding coughs cause some stress. I’ve stopped taking her to the grocery store with me, even with her mask on, and I try to avoid taking her to places like the pharmacy where there seems to be lots of sick people. We do still go to public places but only when they are not crowded and we don’t eat out in public unless we are outside. Even then, if someone coughs or sneezes next to Hana outside I am still in stress mode. It’s hard to balance keeping her isolated and minimizing risk of being around others. Other than some off and on diarrhea (and that could be from medicine), Hana has had no symptoms of being sick. Of course, we do a lot of hand washing and hand sanitizing.

We are very excited to spend this Christmas season at home! We just have to stay healthy!

Heart of Hope

Posted on by katmeander

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

Posted on by katmeander

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

Posted on by katmeander

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!

Doing Great At Home

Posted on by katmeander

Here is another long overdue update: Hana is doing great and everyone else is exhausted! Being at home has been GREAT, but it’s been a little rough. First, I’m trying to make sure we get out to do fun things, making up for all the time in the hospital. Second, we are trying to catch up on nine months away from home. Third, I got a nasty cold that wiped me out for almost two weeks! On top of that is all the appointments, trips to the pharmacy, phone calls, syringe washing, drawing up meds, etc. Also, getting Hana to nap and go to bed has been very challenging and time consuming but once she gets to sleep she does well. She seems really happy and energetic.
Hana’s NG tube is still gone! She seems to be eating better although meal time takes a very long time. We spend a lot of time in the kitchen. Eating on the go is not really a great option because we have to keep her hands clean. She did lose a little weight (100 grams) at her last weight check but they didn’t want to do another one for two more weeks so they don’t seem too concerned. She is doing a great job taking all her meds.

Overall, we are having fun and adjusting to life at home. It’s really hard to make much progress on the backlog of things that must get done but I think it will get better in the next month. Plus, my mom is coming out next week so I think that will help too. My sister was out for a week at the tail end of me being sick and she was a huge help but she mostly covered for me so I could get better. Our friend Judy has also been an enormous help, I don’t know what we would do without her. I’m sure I could make it easier on myself by staying home and not trying to get out with Hana but we’ve done enough of that in the hospital! Most of the mess and projects can wait (until they can’t and then you just figure out how to get it done.) but I’ll admit the mayhem does make me a little crazy.

In the next couple of weeks Hana will have a couple clinic appointments and another cath/biopsy. Let’s hope those numbers look good and she starts gaining weight!

On a mostly unrelated note – my detourleft email had a catastrophic problem and I lost all my emails and contacts that I had saved since the year 2000. If you use that email to contact me, please send me your email address again! Also, if you emailed me at that address in August or early September, I probably didn’t get your message. Sorry to have to broadcast that here.

Thank you for all the support!


Happy To Be Home

Posted on by katmeander

This update is long overdue, so I apologize. We have been so busy and exhausted! In between organizing and unpacking, we are still going to appointments down in Palo Alto, picking up meds, walking Poppy and trying to enjoy our freedoms. But there are lots of good things to update to share!

First, Hana had a birthday and turned two a week after we moved back home. She had a good day and I took her to the open gym session at the gymnastics place where she could climb and jump (after that much of the day was spent preparing for her birthday party the next day). We got an ice cream cake and she actually ate some. The day after, Saturday, we had a birthday party for her on the beach in San Francisco. We invited some of her friends that came to visit her in the hospital. She was VERY excited and had a really great time. I don’t think she understood it was her birthday but she loved being by the ocean and having lots of other little kids around. A bunch of our friends pooled together and bought Hana a toy kitchen. This was always her favorite thing to play with wherever she went (preschool, hospital playroom, hospital gym, RMH playrooms). So, when she got back from her birthday party on the beach her play kitchen was all setup and waiting for her. She LOVED it. It was a great day in the life of Hana!

Second, another of Hana’s nurses at the hospital won the Daisy Award for her care of Hana! Jenny made wraps for Hana’s Berlin Heart dressing which we used instead of the ace wrap. It was better for Hana’s skin, did a better job keeping things in place, was more convenient and more comfortable. Jenny shopped for fabric, made a bunch of prototypes, and sewed a bunch of wraps for Hana in her free time. I was incredibly touched by her dedication and generosity. I think it was very rewarding for Jenny as well. Hana and I made a special trip down to the hospital so that we could be there when they surprised Jenny with the award. It was really great to be a part of it. We really had so many great nurses in the hospital and I am very grateful to them.

Third, Hana had another Cath Lab/Biopsy last week. Last time, she spiked a fever and had very rapid breathing and ended up in the Emergency Room and then was admitted overnight at the hospital. This did not happen this time. Hana’s anesthesia took a long time to wear off and she was kind of like a happy drunk for several hours. She would get up and stagger across the room and then fall on her butt and then laugh at herself. It was pretty funny but I could not take my eyes off of her so that she didn’t hurt herself! She eventually became very irritable. The good news is that the pressures in her heart are WAY down, so much that they thought maybe she was getting too dehydrated (but her BUN and creatinine look normal). She also got another zero rejection back from her heart biopsy! So this is all great news. The only bad news is that two of the vials of her blood for testing clotted so we couldn’t get comprehensive blood work that week (and Kaiser messed up and didn’t have the lab orders in their system for us to make it up a couple days later).

Fourth, Hana’s clinic visits have been going well. She is doing great. They continue to wean her steroid but go up on her blood pressure meds, as her blood pressure remains too high. As standard protocol, they started her on Lipitor as a prevention against coronary artery disease which is the most common reason that someone needs another transplant. We keep dropping her tube feeds and last Friday they decided to drop the last feed, which she was getting at night while she was sleeping. So, her NG tube would only be used for giving her meds and the plan was to slowly introduce more and more of her meds by mouth instead of through the tube. Well, last night (Sunday night or early Monday morning) she somehow accidentally pulled her own NG tube out! We decided to leave it out and just cold turkey see how she would do on taking every single one of her meds by mouth. She gets 14 medications and most of them she gets twice or three times a day. It was a struggle and we had to hold her down for a few but she managed to get all but one medication down (and that one was just Lasix which she immediately spit all of it out). We ended up redosing. In the evening Hana did MUCH better and only really struggled for one medication. She drank and ate more than I have seen her do. I wanted to cry tears of joy! I was so proud of her. We did a lot of celebrating when she finished that last medication! Hopefully, she can keep up the good work on the medications and eating and drinking and the NG tube can stay out for good!

Lastly, I wanted to mention two things that don’t qualify as good news. First, it has been a bit of an adjustment for me to being out and about in the real world, full time. In general (friends and family excluded, of course) people are not nearly as nice as they were in the hospital or the Ronald McDonald House. Of course, this sounds pretty obvious but when you have become so accustomed to it for nine months, its a little surprising. Many of the same challenges still exist yet no one is trying to help you or accommodate you. Not that I expect special treatment, but actually, I guess I do for some things. Sometimes special treatment is appropriate and people at the Ronald McDonald House and the hospital understood that. Stress, fatigue, worry, heartache, etc. is what you deal with every day and besides that a million details to track. I find myself getting frustrated trying to get the many small things done regarding Hana’s care. So, I really appreciate those people that are trying to smooth the road for us.

The last thing I’ll mention is that Sunday morning my grandmother passed away. She was 97 and had been in relatively good health, but lately she had begun to experience some heart problems. She died peacefully and full of love. While she was not perfect, she was an amazing grandmother and such a force of love in my life. She saw a lot in her 97 years but I think all of this that happened with Hana really shook her up and maybe there was a ripple in her resiliency. The day we got the shock of our lives when we learned of Hana’s heart condition was also my grandmother’s 96th birthday. I thought of her often when I needed to find more energy and strength to keep going. She used to tell me stories about her neighborhood growing up in South Philadelphia and how people took care of each other. I’ve thought of that picture she painted often, letting others into our lives to help take care of us. I’m glad she got to spend time with Hana (before we knew about Hana’s heart) and I’m grateful she waited until Hana got her heart to conclude her time on this earth. I will miss her terribly.

Thank you for taking care us!

Welcome Home Hana!

Posted on by katmeander

We are home! It is amazing in so many ways. It feels great and Hana seems very happy. What’s best is that we are finally all together again under one roof because now we have our dog Poppy too!

I’ve been packing like crazy and a friend of a friend picked some stuff up yesterday. Then today our friend Lisa showed up and helped us pack and load up the rest. Paul took the day off from work (sort of, he still did work). Some friends in our neighborhood came to the house and did one last cleaning! When we pulled up to our newly painted house (scaffolding is all gone!) there was a “Welcome Home Hana” sign and balloons!

Some of our friends showed up with champagne and we celebrated and did a little unpacking. Neighbors came by with dinner and dessert! Paul and I got a few crucial things unpacked (medications and medical supplies). We had dinner and then started the bedtime routine. Hana was very excited but did manage to get to sleep in her own room and in her real bed! 

It was sad to leave the Ronald McDonald House today after 60 nights there. We have made a lot of friends there and in the hospital. There are kids we’ve seen go through a lot and it feels a little strange to now exit that world, a world where having a child with a serious medical condition is normal, and just go back home.

We still have a lot to do, unpacking from 267 days away (nearly nine months), but we are so happy and in awe to be home!

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Time To Move Home!

Posted on by katmeander

Today we got the okay to move back home! We are SOOOO excited!!!

Now we just have to figure out logistics. Paul isn’t able to come to the RMH until late Thursday or Friday morning and he still has to work, either way. So, we are hanging out until we have a way to pack all our stuff and take it HOME! It may be Friday night or Saturday. 

In the meantime I’m packing what I can at RMH and following some tips on recovering our stolen bike wheel. 

Home Sweet Home is so close!