A Mid-Weekend update of Facebook posts

The past 24 hours have been especially fearful, following on a day of steps forward that we thought would not mean trouble to come. We continue to have a reason to pray for John's continued recovery, but are forced to see that the road is going to be long and may also be rocky.

7am John's night was quiet. Sedation is off. Now we wait. Lord have mercy.

The plan Friday morning was to remove the tube that connected John to the respirator.

10am The tube is out! He's doing well so far and no dialysis today too.

You may notice on the days when John is doing well that Gina does not have time to update Facebook when she can have time to be with John.

5pm John is still doing well without the vent and has been able to wake up enough that he could get close enough to making the signs for 'yes' and 'no' that I could understand what he wanted. He is still groggy and while drugs is part of that his kidney function isn't helping it so hens going to get dialysis tonight. He is making it farther between dialysis days and so we are still seeing recovery but at John's pace and not ours, which figures. He has not yet wanted a drink which is actually good because he has 5 days of npo - nothing by mouth - before his anastamosis - connection between his small intestine and stomach - has had enough time to heal before it can handle any pressure.

Gina took a picture of John off the ventilator and I post it here:


Around 9pm things began to go downhill for John. The ulcer began to bleed again to the point where his blood pressure and heart rate began to drop. When they pulled the crash cart to the door of the room Gina called me at home. I grabbed as few things as possible and headed out the door. I set a new course record from home to Omaha in under 4 hours.

Gina began posting this morning again:
8am Another sunrise with John after another night of blood and rushing and crash carts in the hallway and a wonderful friend who sang God's Word to us during the darkest moments and a amazing daddy who dropped all and drove quickly to be with his boy. Charity stayed through to morning with us and Dr Fisher the GI doc who knows John best came in to see his ulcer to and found a huge clot and is consulting with adult GI docs about what to do with a man sized ulcer in a tiny boy body. 5 units of blood later along with several each of platelets and plasma and some new Meds and for the moment at least his hemoglobin numbers are holding and his little cheeks are a nice rosy pink. Kidney and liver numbers are holding too and now it is time to just sit and wait and watch and pray.

A friend asked where the ulcer came from?

Noon The ulcer could be caused by a combo of a gut with the tendency to become inflammatory combined with extreme stress of surgery and recovery course and tubes and such. It doesn't help that they don't know the etiology - the why - of John's guts tendency to become inflammatory. The GI doc is a young thinker whose wheels we can always see turning and he has kind of a dual gift for both research and excellent patient care. He is going to be seeing if he can find notes or samples or whatever from John's essentially dead removed bowel and portion of his stomach to see if there is some underlying inflammatory issue that needs to be treated in a different way. He and the surgeon who is on, another excellent doc who is a good surgeon, a mom, and has been caring for John since he came here are trying to decide what is the plan that will resolve the ulcer the most effectively with the least drawbacks. It is interesting to watch them work through this process it is also rather scary and continually drives back to prayers of mercy for John and prayers of wisdom and fortitude for these docs and the rest of the medical staff. So for the moment the verdict is do nothing and hope John won't start bleeding again, they are watching him very carefully and are expecting that they will give him a bit more blood before this is settled. If he starts to bleed it sounds like angioplasty to stop the vessel that is bleeding is the next best option. The plan is to keep him heavily sedated and intubated through the weekend and readdress things on Monday.

5pm Mark and I were able to get some sleep and get back in here just in time for John to start puking blood again. Labs have been sent. John's ng is pulling blood out of his stomach but it is again full of blood. He is currently the right color and temperature but there is blood on hold and no one doubts that we will need it. Mark is headed home to take care of services and I sit by John's bed waiting.

6pm Our treasured friend Pastor Snyder is taking Mark's services and Mark is on his way back here to be with us. John's hemoglobin is down to 8 and platelets have cut in half to 81, a unit of each is on it's way and more being put on hold. Lord have mercy.

10:30pm One unit of packed red cells and one unit of platelets and at the moment John is warm and the correct shades of pink and brown and resting comfortably so it's time for us to get some rest knowing that the nurse will call us if John needs more blood products or bleeds from his nose or mouth again or if anything is amiss. Thanks for keeping us in your prayers and for encouraging us and helping us, as hard and scary as all of this is it is more bearable because we are surrounded by such wonderful people.