Today Hana had a fever (38 degrees Celsius) and a high white blood cell count (70 K/uL). This makes everyone worry about INFECTION. She had finished her post-op antibiotics yesterday so they started her on 3 antibiotics today and they also cultured her PICC line and IJ (internal jugular) line and they did some other blood work. By the time they rounded on Hana the results came back and it does not look like infection but a reaction to the steroid that is used to treat high fibrinogen levels (which need to be low so clots don’t form in the Berlin Heart). For me, it feels like an internal roller coaster ride.
They are moving right along, especially to get her off her IV drips so they can take more lines out and reduce the threat of infection. They took the IJ line out (my least favorite, I’m glad it’s gone!) The fentanyl has been off since yesterday evening. They took off the Nitroprusside and are going down on the Milrinone and increased the enalapril that she gets through her feeding tube. They stopped the Heparin drip and she will now get heparin as an injection twice a day (Lovenox), everyday she has the Berlin Heart. They decreased her versed drip. She is getting alternating methadone or Ativan every three hours. Her withdrawal is somewhat borderline in my opinion, her hands often shake when she is awake. they stopped her TPN and lipids and she is now getting a “normal” volume of continuous feeds (NJ tube right now). They’ve been decreasing her CPAP pressure (6) and hope to have her on high flow nasal cannula by this evening.
I did not get to hold her yesterday purely because of logistical reasons but hopefully that will happen today. The great surprise yesterday was that Infection Control took her off isolation- so no more gowns, masks and gloves! It makes it so much nicer to touch skin to skin (but I also realize how much the masks and gloves were helping to keep my nasal passage and hands moisturized, the hospital air is very dry and can make my nose bleed)!
Despite the infection scare, which was a big deal for a few hours this morning, this is not the biggest news of the day. The big news is that today Hana has officially been listed as status 1a for transplant. Today is Day 0 and the average wait time in our region for her age range is 6-8 months but it could be any time.
Today is Day 27 in the CVICU. I asked how much longer Hana may be here before moving into the floor and they said the soonest she would move is 48-72 hours, if things move as they have and she really doesn’t have an infection. I was just hoping to be out of intensive care before Christmas!
4 thoughts on “Listed”
Hooray about Hana’s being placed on the transplant listing and in such a favorable location! I hope you get your wish of her being out of intensive by Christmas. I’m pulling for all of you. Julie
Overall, this is a wonderful update. I am thankful to hear there is no infection. And being “listed” is promising news, too. I am sure that they will continue to closely watch the Berlin heart (which is simply amazing, btw). I am also glad to hear no more gowns and gloves! That is a huge win, especially when you get to hold her and love on her. Your daugher is a trooper, thats for sure. 🙂 Go Hana! We are all routing for you. xoxo
Hi Hana. Looks like you are waving to the camera. Probably just reaching for mom but it looks cheerful. Baby steps for our baby. Moving forward. After day 0 comes day 1. Kathleen, I think you could be an NP or PA or at least an intensive care nurse with all you have learned. I can’t get over the way you list the meds and what they do. I can tell you my dog is on enalapril and lasix- good stuff. My mom was on Lovenex. Also good stuff. A move for Christmas does not sound like an unreasonable request. I will add that to my prayers. Hana, and you all, are on my mind, in my heart, and in my prayers daily. I pray when I drive and when I do housework so she gets covered several times a day, and of course before I go to sleep. Erin keeps us well updated and so do you. Keep it up Team Hana.
Dear beautiful Hana, always in our thoughts and prayers🙌🏻🙏🏻