Repost of today's Facebook updates

I wanted to begin today's repost with a Scripture verse received in a note from a family that we do not personally know, but who have come into our lives during this struggle. We are so thankful for the encouragement, support, and loving-kindness that is God's gift to us through all of the special and wonderful people that He has used for our and their good in this time.

Lamentations 3:21-24 But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases;his mercies never come to an end;they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.”

7am John is still sound asleep. The nurse came to tell me that he had an excellent night. He needed his pain Meds on schedule but was able to go most of the night without the anti-anxiety Meds. Dialysis is coming to unhook him between 7:30 and 8 and then we will be on 24 he pee pee watch. Come on little kidneys!

10am Dialysis machine is gone and so I go to move my chair so that I can reach his curls and sit right by his head. For the moment he is sleeping and they are supposed to be leaving him alone today and not poking around in his incision to give it some healing time. I'm not holding my breath on that one, the nurse is amazing but sometimes the others have issues with their curiosity level.

I wrote soon afterwords; Remind them that curiosity killed the medical student.

11am Lol, oh honey you would be enjoying this today. So rounds have happened and John is now making something that looks like 'legit poop' into his ostomy bag, extubation is not on the table until tomorrow and g-tube feeds are on hold until news from the biopsy hits. It is entertaining to watch the different personalities play off each other and I can tell that all involved are more optimistic as the days go by because they become more lighthearted.

2pm John was moved to a room down the hall a bit so the maintenance people could get in and fix stuff in his old room. He is stable enough to not be right at the nurses desk anymore and the nurse practitioner just came by to let me know that she wants him to have 2 hours of uninterrupted sleep, hooray, I'm so excited, I've been wanting to kick people out of here for days!

3pm And I didn't mean you guys. So as if we needed a reminder that John is still perched high up in dangerous territory on a very thin little tightrope the dialysis machine is being hooked back up very soon. I still don't understand fully but his potassium is way too high and it's a kidney issue and I will ask enough questions to finally understand but for the moment I just want to cry, Lord have mercy.

5pm Right now John's little kidneys are not kicking in at all to remove the potassium and while there is potassium in today's tpn bag it is just too steep a climb in his blood potassium level to wait for his kidneys to get to work... on this. It was 3.6 at 6am, dialysis was stopped at 8am and at noon it was 5.2. I've done a little bit of reading on kidneys this afternoon and will ask more detailed questions when I get the chance but from what I'm understanding the only thing that can be done is put John back on dialysis for a while, days I would guess, and then trial him off of it again. Not only did the kidneys take a big hit with all the blood loss and low blood pressure but evidentally when a body undergoes extreme stress it can dump potassium like crazy. For now we are right back to where we were depending in God's grace and mercy, I feel like the guy who said 'I believe Lord, help Thou my unbelief.'

The rest of the evening has been uneventful but still tiring; Gina wanted me to assure everyone that John is still fighting and still going in the right direction even though there may have been some false starts to this day.