It’s Not Her Heart

The short update is – they don’t think Hana’s heart has gotten any worse. This is good news. Last night, or was it this morning? They did another chest X-ray at Stanford and say a big white
area where her left lung is. That is what made them worry and want her down in ICU. Everyone was quite worried that her heart function was worsening and fluid was backing up into her lungs. Hana’s cardiologist thought he was going to have to come in to have the “it’s time for the transplant” talk.

It turns out Hana’s left lung is “collapsed”. They believe it is filled with mucus from a cold or infection or both. Since her heart is so enlarged and pushes on her left lung it is very easy for a little mucous to get trapped and push her over the edge. They are checking for RSV (Hana gets a monthly injection to prevent against this) or pneumonia. But it could also just be a cold. They also have preliminary findings that she may have a urinary Tract Infection. Hana has had a terrible time this last week with poopy diapers, which I thought was due to a new probiotic. She has terrible, terrible diaper rash. We’ve been spraying her butt clean instead of wiping and letting her go diaper less and trying all sorts of creams but we were struggling with getting it under control. Anyway, Hana has not had a fever so maybe it’s early on in her UTI, I don’t know. I thought she was just cranky because she was getting another molar! (And maybe that is why she was cranky.)

Hana has been on oxygen – High Flow (10 L) in which she is getting albuturol and something else to help open her lungs. They are starting her on an antibiotic. They did another chest X-ray and felt okay decreasing the High Flow and starting her on a continuous feed or breast milk. Her vitals have all looked good as do her bloodwork numbers.

Hana has been VERY cranky. She didn’t really sleep last night and I think she was hungry and very uncomfortable. It took six sticks to get an IV (the lady in the CVICU got it easily in one try). We are in the “pod” here in the CVICU which means she shares a room with six other patients. It’s hard to sleep because of all the noise!

I finally took a two hour nap after 30 hours awake. I was falling asleep while texting. Our friend Judy came down to
help relieve us at Hana’s bedside. Tonight Paul and I have a sleep sofa upstairs. Thanks for all the support!
Here is a picture from last week:


3 thoughts on “It’s Not Her Heart

  1. I’m so sorry that you are all going through this. Have you ever tried Burt’s Bees diaper rash cream? It is the only one that works for us. I would be happy to send you some to try if you like. Let me know. I will be thinking of you.


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