High Fever and Loving Kindness

Posted on by katmeander

Hana’s temperature has been climbing, even after getting Tylenol. They actually gave Tylenol and Benadryl before giving her the immunosuppressant ATG. In 40 minutes her temperature has gone from 38.6 (101.5) to 39.1 (102.4). This makes me very nervous because it could mean infection. Infection is kind of disastrous because her immune system is suppressed so she won’t reject her new heart. Infection can kill. Or, her temperature could be high because she’s almost 24 hours post-op and inflammation can peak around that time, causing fever. But her CRP and procalcitonin are high and that leads them to believe it’s infection. So, they are doing blood and urine cultures and starting her on broad spectrum antibiotics, vancomycin and zosyn.

We’ve been down this road before and it has always turned out okay. I hope that’s going to be the case. If you want something specific to add to your prayers or positive thoughts for Hana, please add that this is just post-op inflammation, not infection, and that her temperature goes down to normal very soon. Thank you for all the prayers and positive thoughts. We are so grateful!

Following is a beautiful Loving-Kindness meditation for Hana and her donor family, sent by my aunt:

Loving-Kindness meditation for Hana’s new life:

May Hana’s body welcome and nurture her new heart.

May Hana’s spirit soar, explore, create, and become.

May Hana be safe and free from suffering.

May Hana’s heart be strong and whole.

May she live a life filled with gratitude and zest.

May Kathleen and Paul be healed in body and spirit.

May Kathleen, Paul, and Hana grow in joy and peace as a family.


Loving-Kindness meditation for the donor family:

May the donor family be wrapped in a blanket of love and tenderness.

May they be held and rocked in their grief.

May their memories and stories be heard as sacred.

May their compassion and generosity be a lesson to us all.

May their child’s life force bless the world with each sunrise.

In time, may they find solace and meaning in their most loving gift.

In time, may their hearts be healed and at peace.


Leaky Tricuspid Valve

Posted on by katmeander

Hana’s CVP continues to be high around 15. He blood pressure started to get low again. They took her off the propofol and temporarily paused the milrinone and Lasix. They did an echocardiogram and we got to see her new heart for the first time!

Unfortunately, they saw a lot of leakage from her tricuspid valve, which separates her right atrium and right ventricle. They saw no leakage during the echocardiogram in the OR. So, this could be from too much fluid, or valve damage from the new heart being without oxygen for too long. If it’s damage it could get better. Or it could stay the same or it could get worse. Some people live with leaky tricuspid valves and they are fine. If it were severe enough the would consider repairing it or replacing it but we aren’t anywhere close to that.

I wish everything was going perfectly. Because it would be easier on my heart! But Hana continues to do well, her lactate level has not gone above 1.2. So, it is what it is. They started her on vasopressin to help increase her blood pressure. They will then restart the Lasix to take off fluid.

If they can get more fluid off then they will move forward with extubation tomorrow. If not, they will wait another day.


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She’s Doing Great

Posted on by katmeander

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!

Posted on by katmeander

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!

First Update

Posted on by katmeander

We got our first update! They said, “everything is going as planned”! The surgeon made his first incision at 7:37. They called about 30 minutes after that. 

After they cut through the sternum, they will have to remove the Berlin Heart cannula. Then they will remove her heart and put in the new heart. Inserting the new heart should take about an hour to make all the connections.

Here’s a picture of the sleep room we have in the CVICU! It’s the most amazing sleep room I’ve seen yet. 


We are so grateful. Thank you for all the support!

In The OR

Posted on by katmeander

Everything is going as planned. Hana is in the OR. She even walked part of the way and was happy. Otherwise she’s been cranky and a little confused. They said it should be 10 hours for the whole thing. We are finishing packing up the room.

4:30 OR Time

Posted on by katmeander

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

Posted on by katmeander

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

Posted on by katmeander

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

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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!

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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.

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

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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.