Support Registry Update

Lots of Moves

In support of
Riley Herman
View Support Registry
Riley has made quite a few moves this weekend!

On Thursday, she was moved out of CICU into the overflow room.  This happens when they need the room for other patients, but still need to be under CICU care.  Fortunately, being in overflow was short-lived.  Riley is getting better enough that she can move down to the Cardiac Step-Down unit.  This is one step closer to going home!!!

Unfortunately, Riley was transferred while we were out with the boys, and during this time, she lost her lovey that she's had since she was a baby.  She doesn't like to sleep without it.  (In the meantime, back ups are on the way via ebay!).  I'm probably taking this the hardest, as she's loved this since she was a baby and its a great comfort to her.  I'm asking several departments around the hospital and I'm probably becoming "that Mom", but I'm still hoping and praying it'll turn up!

In better and much more important news, Riley's numbers are getting better!  We are seeing her on room air and her O2 stats can be anywhere from 95-100%!!! That's NEVER happened in her whole life!!!   It makes our hearts happy to see this!  She also seems to be improving after her bronchoscopy so much that...

They're talking about sending her home later this week!!!!

We're very excited!!!!  Definitely a long journey to get to this point.  However, its not as simple as we hoped (it never is).  The doctors also found that her heart pressures are increasing to a level they aren't happy about.  This is because the smaller side of her heart is still stiff and not functioning like they hoped.  This doesn't mean the surgery failed.  At best, it needs more time to adjust.  This is why they feel that monitoring her as an outpatient would be better for her recovery (fine with us!).  Another option is that after a few months of monitoring, she'll have to go back to the hospital to be on medicine that will help her heart, but it can only be given as an inpatient.  The worst case scenario, and they said its highly unlikely, is that she'll have to go back to her Glenn surgery that she had in 2023 that they just undid, but they are optimistic that we won't have to go this route.  In the meantime, we're getting Riley to the point that she's more on a home-friendly regiment, her appetite up and her strength a little better, then she can go home.

Praying for strength, for her heart to keep healing so the smaller side can relax, for her to have some recovery time at home, and that she can find her Owl lovey!

Browse Current Support Options

View Options

Comments

Cynthia Cox

That's amazing news. Prayers for finding her owl
  • 25 days ago

Pop-Pop Helinsky

Miss you all. Hope Riley's return home is soon and trouble-free.
  • 25 days ago

Georgette Barlow

What great news. Will continue to keep you all in my prayers. Riley is an amazing little girl!
  • 24 days ago