May 26th Update

Just wanted to give an update on little monkey Kilian.

A lot has happened in the last couple of days, but there hasn't been much change. I'm not even sure where to begin, days are running together at this point and you really start to loose track of time.

In order of events, kind of - and best I can remember.

• Has had his chest cleaned and explored a few times. Remove clots, check for excess bleeding, fresh dressings etc. His chest is still open.

• They were able to advance the ventilation tube quite a bit, and were getting enough air to his lung to see chest rise...movement. we haven't seen that little chest move in a week.

• Ballooned his airway to widen it a little more yet.

• Had air around his lung again, possibly from ballooning the airway.

• Excisting chest catheter was up to high to release the air around his lung so his surgeon placed another one.

• Explored his chest again when the air still wasn't releasing, found and repaired a puncture in his lung.

• Discovered his heart is starting to show signs of stress, talked about if he can get ventilated they would need to place a stint, waiting on FDA approval to use the stint they would need. They wanted to possibly take his heart off ECMO (just use it to support his lung), reducing some risks but that's not an option now with its condition.

• Had a bronc that showed a collapse farther down his airway beyond the repair. Attempting to jump that hurdle.

 
• Forming more clots in the ECMO tubes. The circuts were changed out once already because of this.

• Had our Care Conference, where we went over what has happened, where we are now, and where we're going.

• They advised us that when they have no more options, they will let us know. They understand that quality of life is our biggest concern and they said they will not push beyond that.

• They want to keep trying to get his lung to work, it seems like the minute it shows promise something happens or has to be done that makes us start over, and we just don't have the time to be doing this.

 
• We will reassess Friday/Saturday.

• They are not giving up. But we are nearing enough is enough. There's only so much we can ask this little boy to endure and I think we've asked plenty already. Again, they are completely on board with how we want to go about this..and we all agree it's not the day today, but Bub is really having a hard time.

And his hair is growing like crazy. I can't just talk about all of that up there, have to talk about the good too 🖤 His edema has come down so much that he looks like himself again. I spend most of the time there rubbing his little misshapen from laying for a month head.. And that hair...its the softest you've ever felt. It's long and it's blonde. Sooo blonde.

He has a little pig nose, just like mine and Amelias. He has kevins feet. His ears are his own, and he is the cutest. We giggle about the hair that is still on the back if his arms, like a little baby caveman. We give him kisses on his forehead and cheeks and sometimes I just rest my head on his a bit before we leave. I wish I could scoop him up and snuggle him.

The CICU floor is learning his story, and they all want more. We've been told so many times, 'oh we've heard about Kilian'. The nurses, the surgeons, the doctors,..they're all realizing his determination, and it only makes them fight harder for him. Everyone is well aware of what the probable ending to his story is, but they continue to talk about his future. They continue to have hope. And even tho palliative care is now involved, they wait for his last hail Mary as anxiously as we do.

Kilian will never be forgotten, that much we know and believe, is the point of this whole story.