So, all of a sudden things are moving along quickly. Blood is drawn and IV is placed. IV fluids are started. Hana is finally napping.
OR time is scheduled for 4:30, pacific time. Of course, that could always change. They want to move Hana to the CVICU right before surgery to secure a bed for her there. The hospital is completely full so we have to vacate the room as quickly as possible too!
This morning we got the call (a literal wake up call) that they had a matching donor heart for Hana. We were at home. We are in shock. Also, there is still a chance that the transplant might not happen, although it’s slim. But still we are feeling cautious. Actually, I have so many competing emotions it’s hard to know what I feel – many things.
Today they will do some last minute bloodwork – they always check antibodies again to see if anything has changed. If something drastic has changed then they could pass on the heart. They will start an IV. Hana’s feeds have already stopped so have her blood thinning medications. She will be hungry. She also seems to be getting some two year molars. She will be cranky!
Then there is the donor and the donor family. What can you ever say about the loss of a child? Saying is not adequate. We feel instead. The lives of two families are forever changed. We are so grateful. There are no words, not for us or them.
We will keep you posted! Surgery could be as early as late this afternoon.
191 days in the hospital, 172 days post-Berlin Heart, (164) Last Day On The Transplant List!
It’s been a great week and a half! We’ve hit a lot of milestones too. First, we passed the half a year mark since Hana was first admitted to the hospital (this time around). Hana turned 21-months. I celebrated a birthday too.
Unfortunately, Paul was pretty sick most of last week and kept himself and his germs away and at home. We really missed him a lot but we tried to make the best of it too by doing a lot of activities. It was hard and I had a lot of tension headaches, but Hana and I had a lot of fun.
Hana is still climbing a lot but now she is better at it and I don’t worry quite as much. She has also climbed most things in the room and has moved on to identifying letters and numbers (no, this does not mean she is a genius, she’s just watched a lot of YouTube cartoons!)
We continue to go to the music concerts on the adult side of the hospital. Hana loved dancing to the Latin jazz!
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!
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.
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.
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!
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.
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!
178 days in the hospital, 160 days post-Berlin Heart, 152 days on the transplant list.
We were overall pleased with the news segments from Wednesday. I wish they had focused a tad more on the importance of organ donation, but it has been a positive experience. Unfortunately, it doesn’t seem that the station Abc7 decided to post a link to their segment on Hana. We did get to see it but only when it was broadcast live.
Below is the link to the ktvu (channel 2) station segment on Hana:
http://www.ktvu.com/news/137287533-story
In addition to the news cast, the Stanford Medicine blog posted a story on Hana for today:
http://scopeblog.stanford.edu/2016/05/05/doctors-at-packard-childrens-extend-life-of-20-month-olds-failing-heart/
Never, in my lifetime, did I think I’d solicit a news story. But, since it’s about Hana and not about me it wasn’t too hard! I wasn’t really nervous to be on camera, we feel strongly about helping the cause, but if there were a way to tell the story without talking to me I would have liked that! Of course, a big part in this decision to solicit a news story was Hana’s personality. She is such a friendly kid and seems to handle attention well. We felt she would be fine with the cameras (and she was!).
We were really glad to add a message out there on the importance of organ donation! Please help spread the word.
168 days in the hospital, 150 days post-Berlin Heart, 142 days on the transplant list.
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.
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).
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!”
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!
164 Days in the hospital, 146 days post-Berlin Heart, 138 days on the transplant list.
Hana's Heart 