More Repost from Face-Book Updates

With the exhaustion of the day yesterday I was too tired to transfer the updates from Face-Book. Here is yesterday's updates and the news we have received so far today.

Tuesday
8:30am When the sun comes up the morning after a loved one dies it feels rude, and wrong that the world can go on without the one we love so much. This morning as I sat in the dark waiting and watching for the sky to lighten and the sun to rise I could only think how thankful I am to have one more morning with John in it. John's night was quiet, the bleeding hasn't stopped completely but it is slow enough that no blood products were needed to get him through the night. He is on two blood pressure meds and neither is maxed out. Today we wait and watch and hope that the backwards slide has stopped or at least slowed tremendously and that the corner is close at hand. He has continued to pee pee through the night, but is already getting puffy and behind so may end up back in dialysis. Time will tell, now we wait, thanks for waiting with us.

2:30pm Lasix was given and we have yet to hear back about whether or not John will need to go back on dialysis. They have been able to slowly slowly wean off the pressers and he has been rather stable today and the surgeon tells us that if we can string together another 24 hours this good he will be excited. I am praying for him to get excited :)

7:30pm John is still fluid positive, having taken in more than he's put out, for the day but he has done well enough that he gets to stay off dialysis through the night. He still isn't moving even though the paralytic was stopped earlier in the day, but it took quite some time last time and so I'm trying to wait patiently. Pressers are still where they have been for most of the day but he still isn't needing blood products and is clearing up his lungs some too. Already we have seen proof that the new little pancreas has made itself at home - yesterday his blood sugar was over 300 from all the stress and steroids and they gave him some insulin, then later in the day when again it was time for another big steroid dose they were concerned that he would need more insulin and nope, little pancreas to the rescue blood sugar was 78 :)

11pm We head off to bed tonight with Of the Father's Love Begotten on our hearts and minds and the joy of seeing pee in a catheter tube and a warm little boy who is such a pretty color tonight.

Wednesday - Today
4am ‎30 to 60 ml/hr of urine output, all bleeding continuing to slow and pressers at the turn off level. I don't even know how to type THANK GOD big enough. The surgeon who is on right now has a beautiful Australian accent and yesterday he told us that if we knew a 'urine dance' we should use it, evidentally John's kidneys were listening and are dancing away.

10:30am John has continued to make pee, we are excited. Just talked to the kidney docs and while his kidneys are still quite weak and not really doing a great job of cleaning his blood there is not a plan to put him back on dialysis immediately, just time to wait and watch. John is still needing help maintaining a decent body temperature and blood pressure and I was worried that it was continued sepsis but the nurse practitioner explained that he has just been through so much that he is just very very weak and now needs time to rest and heal without going back to surgery and stuff and that he needs a lot of time. The PICU doctor relieved my worries about John not moving yet, because there is no dialysis running it is his little tired kidneys that are trying to clear the paralytic and so even though it has been turned off for 24 hours he is still drugged from it. It was the tech though that had the most profound statement of he day, we were talking and in midst of conversation I said that we were seeing so many blessings around this I just wish that it wasn't my child in the middle of it and her reply was 'don't you think that Mary felt the same way' and went on to talk to me about how much Mary's mommy heart would hurt watching her child suffer and then gave me a few encouraging passages about suffering and then had to return to her other duties. In the midst of all this what a blessing it was to speak with her this morning.

I will be reposting the rest of today's updates later tonight when we are ready to go to bed.