Field Trips

It has been very busy here. We moved into our new room where we can eat and drink and sleep and I can pump. So what happens is we never leave! I was jogging every other day and since we’ve moved to 3 West, I haven’t been out once.

One thing that makes it busy is Hana. She is awake more and feeling better each day so now we do more with her. We get her out of bed to work on her strength and just to play and hold her. She has Occupational Therapy, Physical Therapy, Speech Therapy and she still has almost daily blood draws and dressing changes of her Berlin Heart cannula.

Hana is drinking a little bit from her Milk Bear – maybe 15-20 mL a few times a day. Today she tasted some cheese puffs (supervised by the OT). She can sit for periods of time without support. She is rolling over in bed and sitting on her knees. 

Hana still has one chest tube which she will hopefully get out tomorrow with her surgical staples. She is trying to wean from the nasal cannula but sometimes when she sleeps they have to put them back on with a tiny bit of oxygen. She will hopefully be done tonight with her 10-day course of antibiotics and her steroids (for high fibrinogen). Lastly we hope her anti-coagulation levels become stable so she doesn’t need to get poked for blood draws so often. But really, what we need is for a heart to become available soon, which is a hard thing to wish for.

The most exciting development has been Hana’s ability to leave her hospital room! It is quite a production to go out in these field trips but it’s possible and encouraged (but only with a nurse). Hana has to be hooked up to a portable monitor. So far, she’s been able to go without taking oxygen. We preferably need to go at a time when we don’t have to take her feeding pump or IV pump. She has to wear a mask, which she hates, but I think she loves getting out! Her first outing was just a lap around the third floor but today she got to go to the pre-school. She did throw up a fair amount when we got there, probably from crying because she didn’t like the mask, but overall I think she loved being in a new environment and seeing other kids!


5 thoughts on “Field Trips

  1. Keeping you all in our daily prayers. The mulitple lab pokes and NG insertions sounded so miserable, and I’m so glad that you are strongly advocating for Hana. Well Done! but at the same time I can imagine that being discouraging and exhausting. I was wondering if the nurses there use LMAX (numbing cream) on her skin on areas where they plan to draw blood from. We place it on children when it’s not an emergency as it has to stay on for at least 30min to numb the skin prior to the lab draw/IV insertion. Anyway, wasn’t sure if they have tried that or have it as an option. If they do, it would be helpful. Also, you can request that the night nurses cluster the work/information they need from Hana (You’re a pro at this, but sometimes the MDs actually have to write an order for the nurses’ to only obtain the bare minimum info at night) so you all can get the rest you need. Keeping your precious intentions close to our hearts. Hope you’re able to get some regular exercise again soon. Big love


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