Day 10.

Morning update:

We arrived to the hospital as they were removing Jack’s femoral central venous line. This was a tube inserted into his vessel for his medication. He’s now receiving the remaining meds through a new IV in his arm.

He’s also completely off the oxygen now. No more high-flow through his nose.

They will begin to give some meds orally as well, as part of the weaning process which means he doesn’t have the continuous drip. All small steps of progress.

Jack is a little bit more wakeful this morning. He still has trouble focusing his eyes, and seems dopey. He is quite tense whenever we try and move him. He definitely calms down more though in response to Matt & me.

Apparently he’s 9.4kg which is almost  1kg more than he was when we arrived at the hospital! That’s a lotta fluid.

He will get another EEG at some point today to again measure brain activity and seizure risk.

The nurses brought in a gravity chair and for the FIRST TIME in 10 days I’m holding my baby boy on my chest. Boom. Heart explode. 💥



Evening update:

Today’s been another roller coaster for me. From feeling very up to feeling very down and ending somewhere in the middle.

I’m so thankful both Matt & I had a chance to cuddle our little lion heart.

The EEG results came back- and they were slow. In other words showing some brain damage. There’s no way to know if it is permanent or reversible from those results. They will have to repeat the EEG again and it sounds like they wish to do another MRI next week as well. The good news is that the EEG shows no risk for seizure.

I have to constantly remind myself that Jack is so young and therefore holds a lot of potential for finding ways to overcome these hurdles.




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