Update 7

Update on Nate.7

Greetings all,

Yesterday (Monday) was a day full of information and clarification of things. I hope I can remember them all to convey to you. Where to begin?

First

It looks like we will be going to New York City, Presbyterian Hospital, and talk to the #1 specialist in the nation who is familiar with conditions like Nathaniel’s (based upon our nephrologists suggestion). His name is Gerald Appel if you want to look him up. We are not sure of the time, but we think it will be some time this Thursday.

Second

This afternoon, Nathaniel will go into surgery for a peritoneal dialysis catheter to be attached to his abdomen so that he can more easily do dialysis nightly at home rather than for 3.5 hours three times a week at a dialysis center. The procedure will take about an hour. The catheter is about a 6-inch tube sticking out Nate’s abdomen that will eventually be attached to a machine each night.  This catheter allows for a phenomenal process that I don’t fully understand that involves pumping a fluid in and out of his abdominal cavity that interacts with capillaries to draw out impurities in his blood… who thinks up these things?! The procedure today takes a couple of weeks to heal and to make sure infection does not occur. Possible infection is the biggest concern so pray that things heal well.

Third

Nate is done with his plasma treatments, one of two types of treatments recommended for his rare disorder. This was more of an inconvenience than a pain. It involved a process like dialysis and made for a long day yesterday for him. The other treatment, the low dose of chemo will continue at about 2-week intervals.

Fourth

Our nephrologist, Dr. Julie Rothman, is a fairly direct, straight-shooting physician (which both I and Nathaniel like) who says that the treatment Nate is enduring is to create the best possible outcome, although it is a longshot that the kidneys will return to fully functioning. Nonetheless, she wants to do all in her power to give Nate the chance. If all goes well, I think she anticipates releasing Nate from the hospital sometime tomorrow after his dialysis. He will then continue dialysis three times a week, MWF, until his catheter heals. Once that heals, he will do dialysis at home at night while he sleeps. Nate will live with this procedure until the doctor deems it right for a transplant. The target date for that, and the placement on a list, has not been discussed at this time. Nate should be able to experience a fairly normal life within limits, although the full implications of this will work itself out in the days and weeks ahead.

Fifth

Many of you have relayed to me your prayer experiences during our “Urinate for Nate” campaign! I must say it provides for some interesting and dare I say rather intimate stories. Nonetheless, I want you to know it has been a testimony to nurses and doctors at the hospital to know of the novel way to remind people to pray for Nate and to thank God for his goodness. It has inspired other such prayer ideas such as “Pee and pray” and “Lord, make a polder of this kidney kid” (For you non-Netherlanders, a polder is a piece of land that remains when all the water has been drained off of it). I wish I could say its effect opened floodgates, but it has not happened yet. So don’t stop… either… (praying or urinating) J…

Sixth

I want to continue to thank you all for your support in prayer and other ways. I can’t explain the strength and endurance we have experienced any other way than by God’s presence and grace afforded through your prayers. I am truly awed and humbled. This update list has swelled from my initial list of about 48 to well over 100 now, and to that I just repeat, to God be the glory. Feel free to continue to pass this on or request that I add people to my direct list. Thanks again.

Shalom,

John