Massive repost of this weekends Face-Book updates

This starts on Saturday morning and continues through tonight, Monday, after 10 pm. This has been a roller coaster ride of activity and emotions and continues to show just who is in control of these things and where our hope lies in all of these events.

Saturday
7am Food and coffee procured, cafeteria people updated on yesterday and now in John's room. He is asleep, well at least he looks it. They had to go up on the oxygen level and the peep-amount of pressure the air goes in with, because he's again a little fluid overloaded from surgery and all the blood products it took to stabilize him after surgery.This is not permanent damage, they are already being able to wean down some and his blood pressure is holding beautifully so they are being able to go up on the dialysis rate some to start pulling fluid back off. As scary and as terrifying ...as this all can be at times it is an absolute marvel to watch what they can, will and need to do to preserve this precious little life, especially when I look at the ages of people, tech and Meds involved and think that all this was being put in place well before John was born and quite a bit before I was too. Our God is gracious and merciful and the gift of life is worth every effort to preserve it. Thanks for the reminder Diane and thanks for being with me through this yesterday, it is one of the hardest things I ever do to watch John be wheeled away from me and then to see them fighting so hard to keep him alive when he is back, thanks for making it easier to stand and watch.

9pm Thanks for the reminders, prayers and encouragement. John is ending this day about where he started it but with lungs that are a little clearer a whole day of sleeping and not being really scared or hurting, for which I so thankful and rel...ieved. I look forward to what tomorrow brings and that Mark is coming in the evening makes it even better. Time in here is surreal, it runs and crawls with little rhyme or reason and so while it's only 5 days since he was last here it feels like weeks on end and his being here tomorrow something akin to waiting for Santa to come.

Sunday
9am John is resting peacefully today, the sun is shining in his room through the windows and it's nice and calm in here. His lungs are kinda chunky and so they are suctioning quite a bit but other than that he is mostly just resting and healing. He squeezed my hand through most of morning prayer, it's nice to know he's in there.

11am The amazing news of the day is that John's bilirubin is down to 19, his eyes are still yellow, but no longer glowing, a lovely indication at just how stellar of a job his new little liver is doing in there. The confusing is that again we are fighting to keep John's blood pressures up, no answer as to why at this point, just more questions and more waiting and wondering. He is not in danger of losing new organs or brain function but may end the day back on some blood pressure medicines.

1pm Um definitely liking and not liking what I'm watching today. Not yet counting the hours 'til Mark gets here, but I will be when he gets on the road.
Again two directions, John's blood oxygen level was so good that despite nit having planned to turn his vent settings down they had to do so anyway and at the same time they have had to start dopamine. We know that there are three bugs growing in the culture taken from the peritoneal fluid, a gram positive, a gram negative and a yeast. Again it looks like we might be chasing after an infection instead of being ahead of it and again we sit praying Lord have Mercy and hoping that the medical team can get ahead of this one.

3pm Sepsis. Kyrie eleison.

Shortly after a friend who is a nurse commented, That's what I was hoping against. Probably a gram negative one causing the issues. I am sorry. Prayers ascend.

Gina replied, I was too, at this point at least we are not coming into it from as far behind but still my heart just sinks knowing what I'm looking at. After Friday the surgeons were expecting it, I suppose I should have been too because post surgery on Friday was a mini version of post surgery on that first Tuesday.

5pm Sadly it looks like at least some of the bugs are growing in, I'm seriously voting for out! At the moment they have started a very small dose of vasopressin and are both working on going up on the dialysis rate and weaning of...f the dopamine which didn't seem to be helping anyway. He is currently about 2 liters positive, meaning that he has taken in 2 liters more than he has gotten rid of since Friday. He is still able to elevate his own blood pressure when aggravated an ability which he lost early on in the last sepsis episode. We are still on the getting worse end of this, but it is worsening at a far slower rate than last time too, so while still worried and concerned I'm not yet scared out of my brain. I am however counting down the hours until Mark will be here!

9pm Mark is safely here with us. John is taking steps down into the valley of sepsis, dopamine is maxed out, other pressers are being tweaked and started and fluids and such are being planned and suggested. So far he is still not needing higher settings on the vent but is no longer tolerating the dialysis machine pulling off any fluid. Lord have mercy.

Monday
4am Waiting for the sun to come up on St Nick, thankful that John is still here with us and not yet with the real St Nick. A long night, much blood on ways and from places and in amounts that are unfathomable to my mommy brain.John is chemically paralyzed, heavily sedated and being held on his tightrope by God through the hands of many dedicated professionals who have worked tirelessly through the night. Lord have mercy!

2pm The day progressed from awful to worse. Most of the night we spent holding cloths over John's nose and mouth trying to catch the blood that was pouring out and hoping that it would clot off and stop. Morning came and with it came a new fear..., instead of John's blood pressure being too low, suddenly it was too high with no apparent reason and his heart rate too slow, classic symptoms of a massive bleed into the brain. John was taken down to CAT scan and we waited outside the door for the answer, either he was going back in to surgery to find and stop the bleeding or he was going back to his room where we would discuss options I don't even want to contemplate. The news was his brain looked fine and so they were off to surgery with some hope that they might be able to stop the bleeding and save him yet again. Charity sent her Pastor to be with us and he waited with us through surgery and helped us to remember God's promises and pass the time. We were all delighted when Dr Fisher came in with a huge grin to tell us that it was a bleeding ulcer and they have a medicine plan and 2 back up plans to care for it so that John will get to use his new intestines. John is still septic, there is still quite the battle ahead but for the moment while yet perched on the tightrope it does seem that he is not dangling so precariously over the edge.

5pm I posted, Update from the dad side. In the midst of darkness rays of hope shine. John's kidneys have picked up a bit, even the nurses were ready to do the pee pee dance. Even paralyzed his heart rate responded to the nurses care and when they checked his eyes they were very responsive to the light. He needed more sedation, but he is still in there.

7pm The sun has set and it is dark outside. During the night I just kept praying 'one more hour, one more sunrise' and tonight I am privileged to sit next to John's bed as the nurses change shifts and the doctors peek in for one more time before they head off to try to sleep.tonight my only prayer is thank you, thank you Lord for having mercy on me and letting me sit by John one more night!

It is now after 10pm and John is in the capable hands of the medical team and the more capable Hands of His Lord and Savior, Jesus Christ. He has remained steady and needed only minor additions of blood pressure medications after nursing care and being repositioned. We pray, O Christ grant us a quiet night and deliver us through these dark times by the light of Your grace. Amen