Today was a good day. This morning's ultrasound showed good blood flow through all vessels. The arterial lines (one in each arm) were removed as was the nasogastric (NG) tube. Porter was doing so well that the transplant team decided he was ready to leave the ICU and go out on the floor.
Porter is starting to open his eyes more.
The medical team is managing Porter's pain with morphine which seems to be working well. They have him on a small dose because they don't want the new liver to have to work too hard as it's getting settled in its new home. The morphine lasts about two hours and as it wears off he becomes increasingly uncomfortable. About half way through the day he started holding his breath in response to the pain. Breath holding is a totally normal, age appropriate response but it causes his blood oxygen level to go down (desat). Since nurses on the transplant floor care for up to 5 kids at a time they don't feel comfortable having a kiddo who keeps desating. So, Porter earned himself one more night in the ICU; which really isn't all that bad considering we have a nurse dedicated to him and access to ICU parent sleep spaces. A sleep space is a dark, quiet room with a reasonably comfortable twin bed and access to bathrooms with showers. It's no 5 star hotel but who cares about luxury when you're bone achingly zombie tired? I got the sleep space last night while Chris stayed with Porter. Tonight we've switched.
There were two highlights of my day. The first was when we skyped with Katie. She's doing really well with Grandma and Grandpa Johnstone. Seeing her made me smile but also made me miss her even more. I can't wait until Sunday when Chris' parents will bring her down to be with us for the week.
The second highlight of my day was holding Porter. I held him for about an hour and even though I had to pee the whole time it was still awesome!
As you said "Awesome" Reading your blog has been the highlight of our day. Love you guys , Peter and Clara
ReplyDeleteOh I so agree with Peter. Thank you for letting us into this special space. Sending you all the love, good wishes and prayers I can muster up.
ReplyDeleteAwesome indeed! Since Porter loves to cuddle, I am sure it was the highlight of his day as well. We are sending all our love and positive thoughts your way.
ReplyDeleteOur son Nate (Kerianne's husband) had co-arctation surgery when he was three there and we were able to sleep in the room you speak of. The staff there is truly amazing and I'm sure you see what FANTASTIC hands you are in! Keep those small moments special in your heart and know that you'll be home soon chasing that cutie around the house!!
ReplyDeleteHello and thank you for the great updates. I also love the photos. Sounds like things are going well. Keep up the good work Porter. I am following closely and praying for each day to be better than the last. Take good care. 😍🙏🏼😇
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