I had a few minutes so I thought I would post a quick update. Shift change went quick for the nurses tonight so Gideon is about to get a quick bath, a sterile dressing change then we get to snuggle before bed. We already had some good snuggles today but we get more tonight!
Today was very low key. We snuggled some this morning and he napped a lot throughout the day. I tried to keep him awake so he would sleep at night but they frown on that in here and say to let him rest, heal & grow when he is willing so I did. But he has a procedure tonight (the sterile dressing change) so he will be awake for a while for that.
This is a rough place to be … it wears on you mentally more than you realize. I’m pretty much always on the verge of tears for someone or something. I was visiting with another ‘cardiac mom’ today talking about the code we heard. There are constantly pages going out for a rapid response team or a medical team or a this team or a that team. Today one of them was very close to home, just down the hall and I found out later that a baby had been ‘called home to Heaven’ as his mother put it. Not ok. That’s just not ok. He was just a baby. He had been here a month, he was improving everyday and almost ready to head back out to “the floor” which is where you go after you’re released from Intensive Care and he just died today instead. The mom I was talking with had also been previously released to “the floor” when her baby had a hiccup and ended back in the CICU again. We together were talking with another mom whose baby was released and went home, 3 days later, he stopped breathing and they have been back now for I don’t even know how long. NOT OK. These stories are terrifying and scary and make me so sad for all the mamas go through in here. It wears on my heart and my mind but I’ve had the opportunity to talk a lot about the goodness of God and his promises and what His word says and how I cling to that when I’m scared & afraid because it’s all I can do so I don’t literally go crazy.
So no new updates, no real progress today, he started on his new cardiac med so tomorrow he will probably start weaninng from his other med. We certainly need big prayers for the transition of medications, his NIRS readings & his labs,
They did reduce his air flow today to 3L and he has done just fine with that.
Occupational therapy didn’t show up today so we didn’t get to practice binkie training today but that will resume tomorrow as long as he is still stable and well.
Time to go help with his bath & snuggle then get to bed! Hopefully we can be done with all that by 10 and get some good sleep tonight! Thanks for the prayers!
I am so happy that you and your family have a strong Faith to help you through all of this.
You can do this. Stay strong, cry, pray and continue to be there for Gideon. God placed you in eachother’s lives for a reason.
You got this Kari. Through it all, your faith in God will keep you going. Take a few moments now and then to take a few deep breaths and try to relax in between the chaos. We are thinking of you and Gideon and your family.
Oh Kari…I so wish I could be there in person to encourage you and hug you. I miss you. I’m believing for the day you will be right next door again and with four little boys driving you crazy! haha We are praying for you all. Love you little Gideon! You are WAY too cute!
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