August 2019 – Hana's Heart

Hana had her annual Cardiac Catheterization/Biopsy recently, on Wednesday. This is different than the other times she has had to go to the Cath Lab because once a year they go into the left side of heart as well (they usually just go into the right side of the heart) and measure pressures and look at her coronary arteries. It’s just too risky and invasive to do it every time, especially when the main thing is to get a biopsy of the heart to check for rejection. This is a much longer day at the hospital because Hana has to remain flat for four hours after they remove the catheter from her leg (groin area) and so she is sent to the Short Stay Unit after her recovery in the PACU.

It ended up being a traumatic day. We started off with a blood draw for some medication/drug tests that are timed and needed to be done early in the morning. Typically they try to draw these labs in the Cath Lab when they are placing an IV but the timing of her surgical procedure was just too late today to get the blood drawn for a couple of these important tests. Hana has been doing AMAZING with blood draws lately. She impresses everyone in the lab with how well she does. This was not the case today. I don’t know if the phlebotomist was just having an off day but it was terrible. She was moving the needle around in Hana’s arm and I was about to tell her to stop when she got blood flowing. But then the blood stopped and she had to poke Hana again and again it went poorly and AGAIN she moved the needle around and I was about to say something really nasty (not really but I was really pissed) but then the blood started flowing and I just wanted it to be over for Hana’s sake and her watching me get mad at someone in that situation I don’t believe helps her. I’ve never had to draw blood but I have had someone move a needle around in my arm trying to get blood and I almost passed out. It’s awful and it seems like maybe it is a bad practice, but what do I know?

Then, things go smoothly until its time for Hana to take her pre-med, her versed, to help her relax when it is time to get the gas mask to start her anesthesia in the Cath Lab. The gas mask is another very traumatic event and it has not gone well for Hana, ever. It has always been a struggle and eventually they just hold her down and put the mask on and it is awful to watch but at least with the versed, she doesn’t remember any of it. But oral versed tastes awful and Hana is older now and knows how to refuse but not old enough to understand how it helps her. She was curled up in the bed, hiding her face with both her hands over her mouth. Last time I promised to let her have her oral Nystatin right after the versed to help “chase away” the taste, but this was not a strong enough incentive and that flavoring they use for the versed just doesn’t cover the bad taste enough to convince her. So, she didn’t take it. A Child Life Specialist was there to help try other things to help make the gas mask seem less scary and that seemed to be working really well and so off they rolled to the Cath Lab, playing a game of breathing through the gas mask (not hooked up yet) and blowing out candles on a birthday cake. As I learned later, her comfort switched the instant they switched her from the hospital bed to the Cath Lab table and certainly much effort was made to comfort her but they could not coax her to allow the gas mask so they had to resort to holding her down until she took two breaths. Have you ever had someone hold you under water when you needed to breathe?

Her Cardiac Catheterization seemed to go smoothly and was uneventful as far as I know. She seemed to get out really quickly in the time it takes for me to get some breakfast, chat with two different groups of people I know that I ran into in the hospital, and to make a couple of phone calls. Hana was still very out of it in the PACU when I got there. They did her echocardiagram as she was waking up. She was still very sleepy. Then she was moved to the Short Stay Unit. We spent time watching movies, playing with stickers and she finally got to eat and drink. I have a bag of “tricks” I brought to help keep her occupied but beside lots of different stickers, she really just wanted to watch Octonauts. Her transplant NP came in and we discussed various things including her heart pressures, which were within normal limits for a transplanted heart. Biopsy results take another day.

After her four hours of being flat, the nurse came in and checked her out and then helped me sit her up and get her in my arms so I could carry her to the bathroom because she said she had to go. I sat her on the toilet and stepped back and saw lots of blood and more coming. I shouted for the nurse (the nurses station was right outside her room) and started to pick her back up to get Hana back in bed and the nurse came in and took her the rest of the way. Then two more nurses came in and they held pressure on her catheter insertion site. They got the bleeding to stop, cleaned her up, changed her sheets, and called the Cath team. They said she probably had a small blood clot that was keeping blood from oozing out and when she finally moved, it shifted and then everything started bleeding. I had blood all over my zip up jacket and some on my jeans. The nurses remarked at how calm Hana remained. I like to thing its because I was calm and the nurse all responded in a calm way. But I know it freaked her out a little bit too.

Hana had to go back to being flat for awhile. I guess this was good because it gave me more time to talk to several other people who stopped in the room including the Child Life Specialist and the anesthesiology fellow. The Child Life Specialist and I talked about what happened in the Cath Lab, strategies for next time and she went off and collected an awesome bag of medical play supplies. The pediatric cardiac anesthesiology fellow, who is almost done his fellowship, chatted with me for a long time too and he was upset by how much trauma Hana had to endure with the gas mask and we came up with alternatives for next time as well. In short, he does not think it would be good for Hana to attempt the mask again next time without a pre-med.

After about 90 minutes the nurses slowly started getting her up. She said she didn’t have to go to the bathroom (she never got a chance the previous time!), but I was pretty sure that was just because she was now scared to go. She walked to the bathroom like a pro and did fine. I will also say by this time she was really close to being back to her normal, spunky self so she was cracking me up a little bit at the same time. We managed to get discharged and to our car at 5pm. We got home at 6:30pm about 12 hours after we had left.

Later in the evening, I caught Hana horsing around too much and she had a little more bleeding at her catheter site so we had to change the dressing they put on and she did not like that so she was good about calming down after that. The next day I thought it was okay for her to go to school, her bandaid was free and clear of blood, but she did come home with a saturated bandaid and some on her underwear so I changed the bandaid and cleaned it and I ended up calling the cardiac Cath team as per the instructions I was given. They were not worried. Hana was a little worried.

All in all, I think we have trauma to work through. Hana is such a trooper and so resilient but I never want to take that for granted. I think in the coming days we will need to get some of this out, however that looks. And can I just say, for a moment, I know Hana is enduring all this, but it’s a little hard for me too and I’m always surprised at how exhausted and drained I am after these things. I seem to hold it together just fine, but the moment I get to “relax” I really crash. How many days were like this after Hana was diagnosed but we were at home or when she was in the hospital? How many days did we not have the chance to “relax” or “crash”? Or recover? There were plenty of uneventful days in the hospital but there were also plenty that weren’t, at all or were just plain terrible. And there was never really an uneventful day at home, it was a round-the-clock job. It was like being in survival mode all the time, for years. I think I still operate that way, a little bit, just out of habit.

And as for the results you have all been waiting for? Hana got a big fat ZERO rejection for her biopsy results! We are beyond thrilled! Her next biopsy is in six months!

Also, I wanted to mention that I promised two public updates a year on how Hana was doing. This is the first and I anticipate the next one will be after next biopsy in six months. If you want to access updates between now and then, subscribe by email to the blog and/or join the Hana’s Heart Facebook group.

It is already August! There are Big Changes coming both in Hana’s life and to this blog so keep reading to find out more. It has been a good summer. One of the things that has made it great is we got to go on vacation! Our summer vacation was centered around going to the Donor Dash – a 5K run/walk in Denver that honors and celebrates organ and tissue donors. Hana’s heart donor, Leo, was from Colorado and his family attends the Donor Dash every year. When I say his family, I mean extended family from a day’s drive away make the pilgrimage to Denver to honor this little boy’s memory. So, this year we decided to attend as well. My parents, two of my sisters and my brother-in-law’s family all attended as well! There were over 50 people on the “Leo’s Pride” team! It was really, really special to be a part of it.

Our summer trip started off by driving from San Francisco to Breckenridge, Colorado via Utah. We spent a week in Breckenridge with my family and then went to Denver for the Donor Dash. After that we drove to Pittsburgh and spent some time with Paul’s family. After that, Paul drove our car all the way back to San Francisco and my parents came out to Pittsburgh and picked up me and the girls and we spent a couple of weeks at their house in eastern Pennsylvania. I feel very lucky that we were able to do all of this and grateful to Paul for holding down the fort back at home while I took the kids to lots of fun places.

But now we are back in San Francisco (and glad to be together again as a family!) and although the weather has been surprisingly nice for August (it is usually cold and very foggy) it feels like our summer is really coming to an end. At the end of the month, Hana will have her annual biopsy. This means that in the Cath Lab they will use the catheter to go into both the right and left side of the heart, measuring heart pressures, taking a biopsy sample and looking at her coronary arteries. Just thinking about it gives me a lot of anxiety about all the “what ifs” so I will just have to keep working on stopping those thoughts in the next couple of weeks because they serve no use. For now, I’ll just focus on keeping Hana healthy so nothing, like getting a cold, delays her biopsy.

So, now for the Big Changes! First, Hana turns FIVE in a week! Second, Hana starts KINDERGARTEN in a week too (on the same day, actually). I can hardly believe it. My heart might break but I think it will be so fun for her. The school is very close to our house, only a block away, so that is really nice. It will be a big adjustment for everyone!

Finally, I am making a big change to this blog. In order to give Hana the opportunity to have a somewhat “anonymous” childhood we have decided to limit what we will share on social media and what we make available online once Hana turns five. Actually, this was something we had decided on when she was born and when she got sick we decided she/we needed all the love and support we could get and we decided to forgo that. We opened up our lives, Hana’s life to all of you. We do not regret that at all. But we feel that Hana deserves the chance to decide what she wants to keep private and what she wants to share, especially as she gets older. Until she can understand what it means to share your life online we will just limit the sharing until she is old enough to decide.

Now, this doesn’t mean that we are suddenly shutting you all out! We will still post updates and pictures but the posts will be password protected. All followers of the blog by email (you receive the blog post as an email) will be emailed the password and members of the Hana’s Heart Facebook group will be given the password. For all the followers of this blog but not by email, I’m sorry, for now I’m not sure how to share a password. If you know, tell me! And if you are a WordPress Whiz and want to suggest another way to protect privacy, please let me know! In addition to all of this, we will still post two public updates about Hana a year (we may still post about events like the Summer Scamper, Donate Life Month etc.). Also, and I hope I never have to do this, but if anything were to really take a turn for the worse than we would certainly reconsider this plan. In other words, no news is good news.

You, readers, supporters have all been a huge, tremendous and powerful force in our lives, in Hana’s life. We are eternally grateful from the bottom of our hearts. It has been a movement that has changed us forever. It has been a joy to share all of this with you. Thank you for sticking this out with us!