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!

8 thoughts on “A Long Day

  1. Just you with your baby holding each other, her beautiful smile will return soon πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»Dear Jesus keep holding Hana close please heal her and rain peace and joy over this familyπŸ™πŸ»

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  2. We lifted you all up in prayer this past Sunday in worship, and continue to do so. You have been in our hearts and our prayers these many months. Hana is such a beautiful child, able to capture your heart through the pictures you share. May she (and all of you) feel the loving presence of God in these amazing times. And to the donor’s family who have given such a wonderful gift, may God bless them and help them through what we know must be the worst time in their lives. Peace and strong hearts be with you all! AMEN!

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