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.
8 thoughts on “She’s Doing Great”
Beautiful baby… God is good. GOD bless Hana. And god bless the child that died to give your girl the chance at life. I’m an old cvicu nurse and let me tell you all the things you just reported sound perfect… which is so wonderful to hear… she is a lucky little girl in so many ways… May 28… it’s a good day
Praise God, who is looking after her, and bless the surgeons and health care providers for wondrous work.
I can’t imagine better news! I am so happy Hana is doing well and now it’s just a matter of time until you move back home! Best wishes Hana on a speedy recovery, it will be such a joy to watch you grow and play.
Kathleen, relief, awe and deep happiness is what I feel for you and your family!! I’m also so happy that you’ve opened yourself up by documenting and sharing your feelings about your sweet little Hana. By doing so has freed you up and will allow you to be even more present than you have been. You’ve made ready your heart and mind for this. We will continue to lift you and your dear family ( and Hana’s tricuspid valve) up in our daily family prayers! Big big love and hugs!
God bless her and all of you. Prayers being said❤️
Prayers are with your little angel! God bless the nurses and doctors caring for her! Thoughts are with you and your family♡
We are in awe of your love, strength, and endurance! We send hugs and prayers to you, Paul, Hana and your team at the hospital. Lauren, Rick, Carolyn & Julie.