A Long Day

Today has been very busy and has felt long. Hana woke up and seemed pretty cranky, maybe sad and in pain – more like I would expect. 

First, her X-ray showed her pneumothoraces are completely resolved so that was great. They gave her regular nasal cannulas and turned her down to 2L. They restarted her feeds of breast milk at only 10mL an hour. She got an IV that wasn’t flushing well taken out of her foot. She got her leaky arterial line out, they were going to wait another day but they didn’t really want her losing any more blood. Her hematocrit was 21 and her hemoglobin was 7.4 so they gave her a blood transfusion. 

She got two breathing treatments – one she will get twice a day until she is discharged from the hospital, it’s to protect against the spores that may be in the air from all the new hospital construction. To do the breathing treatment, they hold a mask over her face – she does not like that! The second breathing treatment, pentamidine, is supposed to be administered once a month but we think she had an allergic reaction to it. Hana started to get hives on her neck and then her abdomen and back. They gave her Benadryl and then IV hydrocortisone. Then they wrote in her chart to never give pentamidine again. We were worried that the rash was from the blood transfusion but it started three hours after the transfusion started, so they don’t think it was the blood.


Hana’s blood pressure and central venous  pressure has been higher but they think that’s because she has so much more volume from all the transfused blood. She is getting more Lasix and diuril (and therefore more potassium). She looks puffy. She will probably get puffy from the prednisolone that she will need to take for 9 months.

They hope to shut off the milrinone very early Friday morning. After a day off of it she might be able to be moved back upstairs, out of the CVICU, as early as Saturday. Incredible! After that she would be on the floor at least a week before being discharged. It’s crazy to think such a thought.

Today Paul and I started receiving our transplant education. First we went over medications with the transplant pharmacist. It’s a whole new world. At least I understand more about medications in general now. Then we met with the transplant nurse practitioner to start going over care, signs of rejection, who to call, etc. We will have two more education sessions with the NP before being discharged.

Hana drank about 100 mL of breast milk, which I thought was great since she hadn’t had anything since last Friday. She also took her Tacrolimus (Prograf) by mouth again, which continues to be successful, thank goodness. The best thing was I got to finally hold Hana today, it was so wonderful!

Hopefully Hana will be able to get more sleep – it’s hard to sleep in the ICU. She doesn’t seem very happy, more like sad or maybe just in pain, so I hope she continues to heal and fall in love with her own heart. Maybe we could all try to do the same too!


196 days in the hospital, almost 5 days with her new heart!

Better Today

Hana’s fever is down to normal range. They still have her on the cooling blanket. She is still getting two broad spectrum antibiotics, although they switched out the zosyn for something easier on the kidneys. The attending doctors don’t feel like the fever was caused by infection. Attending doctors seem so much more calm about these things than fellows, or at least the newer fellows.

Hana’s CVP is down to about 10, which is where they want it. She is starting to have good urine output. They are still pacing her heart. Her blood pressure has been good. They took out her femoral line and the Foley catheter. Her sedation seems to be in a good place. They started her on Prilosec since she is not getting anything in her stomach.

They will do another echocardiogram today. Her X-ray this morning looked good – a lot less fluid. It’s actually amazing to see her X-ray now, her new heart is so much smaller and doesn’t take up almost the entire left side!

They will most likely not extubate today. Unless they can wean the vent more and if her echocardiogram looks amazing, than maybe. But it’s a holiday and Hana’s had three failed extubations so maybe it’s better to wait until tomorrow when all the normal staff is back and close by.

Overall, they think she is doing really well!


193 days in the hospital, 1 full day with her new heart!

She’s Doing Great

After sleeping for a few hours we got up to check on Hana around 8:30. Apparently, she had tried to climb out of bed! This is actually not good because she needs to stay more sedated and still, especially while having a breathing tube.

In addition to her breathing tube, she has two arterial lines, a 3 IVs, an IJ (internal jugular central line), 4 chest tubes, a Foley catheter, pacing wires and of course her incision in her chest and the two areas where her Berlin Heart cannulas entered her body.

Here’s some more technical stuff.

She is getting morphine, epinephrine and propofol drips, precedex as needed. She is getting IV dopamine to help her new heart squeeze and also milrinone to help with heart function. She is getting magnesium and sodium. They’ve started her on IV Lasix to help take some fluid off. She is getting intermittent IV Cellcept and methylprednisone which are immunosuppressant for her new heart. She is also getting another dose of IVIG, just like she would get before. They’ve already taken her off Nitroprusside and fentanyl. 

Everything is going really great. They have things they are “concerned” about which just means they watch and make adjustments for, but overall they are not concerned and they think she is doing great. Some “concerns” are her CVPs (central venous pressure) which have been high around 14. They want it to be closer to 10. This means there is more pressure on the right side of her heart. This is why she is getting Lasix to offload fluid. In addition, they have her hooked up to a pacemaker. Her heart rate is set to 140. Her blood pressure was low, due to the precedex but is coming up nicely now that they’ve taken her off of it.

Her right heart they are watching closely because of a long ischemic time. This means her new heart was without oxygen for a long time, although within acceptable limits for a transplant. This happened because her new heart came from “further away”. They can’t tell us anything about the donor but this tidbit of information came up because it is part of Hana’s care. She also might need to be on milrinone for the same reason. If her CVPs don’t come down by this afternoon then they will do an echocardiogram. 

For the rest of the day, other than watch her right heart, they will take out her femoral arterial line as long as her radial arterial line seems okay, which I guess can go “soft” after surgery. They will start her on another immunosuppressant called ATG (anti-thymocyte globulin) which will help keep her white blood cell count down. Her IVIG will end (she will probably need IVIG therapy for a year). They are keeping her cool with cold packs because her temperature was a bit high, probably due to inflammation. They will probably start her on TPN, which is IV nutrition, later today.

Her surgery went faster than expected. While she was on heart and lung bypass during her surgery, her lactate never went above 1, which they have seen before. This is a very good thing. I guess your lactate level can go to 1 just getting a blood draw.

Today is the day to rest for us because tomorrow her breathing tube comes out and then it gets hectic! Last night the sounds of the CVICU, beeps and alarms, produced a lot of unexpected anxiety for me. Things can turn quickly here. I keep reminding myself of what is the truth now and that is – she is doing well, so let’s be with that!

It’s a start of a new journey! Transplant is not a cure, it is trading a life threatening condition for a chronic condition. But it is a chance at life! We are still in awe.


She’s Done!

Hana’s heart transplant is done! It went very smoothly with no surprises. The surgeon told us the new heart is working very well. Hana just came up from the OR and is getting settled in the CVICU. We will get to see her in about 30-45 minutes.

We did see her as she was wheeled out of the elevator.

I am on the brink of very overwhelming emotions.

After we see her we are going to try to SLEEP. Hana will be very sedated for awhile. Tonight they will just let her be. She has a breathing tube and will have it for about 24 hours. 

We are so incredibly grateful for this gift of life!



192 days in the hospital, day of transplant!

4:30 OR Time

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!

A Heart For Hana

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!

Half A Year

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!)

Watching our dog Poppy in the PoppOlympics

We continue to go to the music concerts on the adult side of the hospital. Hana loved dancing to the Latin jazz!

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We had a very special treat in that Poppy came for a short visit. Hana had the delight of feeding her treats!

The whole family together!

A few hours free of her NG tube!

Preparing for her dressing change.

Living on the edge!

We are trying to get better at habitual hand washing but Hana turned it into a bath!

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Below is Hana saying some letters and numbers.


This is what happens (many times a day) when Hana kinks her Berlin Heart pump.


Going to check out the hospital prom decorations
Trying to scale the side of her crib!
Watching Jeff, the guitarist, at preschool
This is what Hana’s bathtime looks like

This week Hana’s been throwing up more. I hope she is not getting sick! We are grateful that she has been doing so well. Not everyone is as fortunate and it makes our hearts ache for them. In a lot of ways things are easier here than at home – I don’t have to get up to start feeds in the middle of the night, turn off feeds, give late night meds, wash as many bottles, I don’t wash syringes or draw up meds, I don’t fortify milk or mix formula, there’s no running to the pharmacy or lots of appointments, I don’t order medical supplies, I don’t have to do laundry other than our clothes, I can’t cook dinner or walk Poppy. Ok, the last two I wish were different. Another thing, there is always someone around to help when you need an extra set of hands! We are grateful!
188 days in the hospital, 170 days post-Berlin Heart, 162 days on the transplant list.

Climbing

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

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

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

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

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

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A little bored!

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

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

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Staring at Jeff the guitarist.

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

May 11, 2016
Replacing the Ace Wrap!

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

May 9, 2016

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

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

Here are a few more pictures of some activity!

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Cinco de Mayo celebration

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Watching the ants go marching one by one.

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

On Local News Tonight

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

Channel 2 – http://www.ktvu.com

Channel 7 – http://abc7news.com

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

Putting Your Heart On Ice

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

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

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

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

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Custom made window cling!
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Hot air balloon decoration!

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

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by Eugenia Mancini Horan

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

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

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