Struggles and Surrender

Samuel and I spent another night in the emergency room, so if I sound a bit more discouraged than usual it is likely due to missing two nights of sleep this week. Another contributing factor would be my concern for Samuel. He is really in a hole. I am struggling not to be controlled by my emotions and lack of sleep.

The purpose of last night's visit to the ER was to get control of Samuel's migraine (which had escalated to a whopping "10" on the pain scale) and to lower his blood pressure. Pain is a horrible thing. While he has had some degree or another of a migraine for almost 3 weeks, yesterday's escalation was likely triggered by having had an extra amount of fluid removed during dialysis.

Samuel has been arriving in dialysis at about the same weight each time. Because he has been eating so poorly for some weeks now, we started to suspect that less of his weight was flesh and more of it was fluid. So while the number on the scale was relatively consistent, we suspected that his dry weight was actually much less than it had been. That could be contributing to his blood pressure being high.

They are always hesitant to challenge him with too much fluid removal because of his body's sensitivity to fluid shifts, but since he was already in a bad way during dialysis yesterday, we decided to see if there was extra fluid that could be removed. It is only a matter of adjusting the fluid removal goal on the dialysis machine. They could have pulled off more, but they stopped at 2.3 liters, which would seem to confirm that he has been carrying extra fluid and that his dry weight has dropped significantly.

It is likely that this fluid challenge is what landed him in the ER. If we end up with a more accurate idea of his actual dry weight and if it ultimately means his blood pressure will be better managed, then it will have been worth it. I can say that objectively, but I am not the one who was in physical agony for hours last night. Mine was the silent pain of a mother's heart breaking as she helplessly watches her child suffer.

Today is a repeat of Tuesday's day-after-a-night-in-the-ER. His headache is "only" a 7.5 and the emesis basin is his constant companion. He has been unable to eat and looks like a walking skeleton. Mostly he is trying to sleep.

Plans for the paired exchange continue to move forward. Things are getting complicated. We don't know much and what little we do know, we have been asked not to share. Everything is still too tentative to announce. It would appear that we will be asked to step way outside our comfort zone. We are grateful for this time to process and prepare.

All of this will be for naught if Samuel is not well enough to undergo and recover from a big surgery. Everyone recognizes that a new kidney is what he really needs to be well, but of course, they won't allow him to go through with the transplant if he isn't well enough to handle it.

Lord, I place Samuel, his health, his life in your hands. I trust you to provide what he needs in your perfect timing. Give me your grace and peace that passes understanding to accept whatever is ahead - both the good and the bad. Thank you, Jesus.