Update 12

Greetings Friends and Family,

Well, this was a big week for us. Nate began the training for home dialysis (Peritoneal Dialysis-PD), and made it through his third round of chemo, and has begun to taper off of his steroids. Talking to his doctor on Tuesday has lead us to believe that his kidneys have not really responded to any of the therapies attempted and there really are no further medical options in terms of helping to restore any level of kidney functioning.  But it has not ever actually been about the kidneys per se, but about God’s glory manifest through this situation, so we continue to hold on to the knowledge that God has this all under control in ways deeper than we can understand right now.

Nathaniel began this week learning about what procedures are necessary for his in-home dialysis by first learning what to do if he ever needed to do the PD without a machine. It can be done through a “low tech” gravity method which will always be a “back-up” procedure in the event the machine stops working. After learning about that, he spent time learning about the machine assisted PD. You can actually see it in the picture at the bottom of the page, taken after his first night of PD at home. The machine is no bigger than a small suitcase, and although not intended to be “portable”, it can be taken on trips and journeys away from home. Given that dialysis is done all over the nation, there are centers all over as well that can assist him should he ever travel and need it apart from central PA. That’s one advantage to having such a popular disorder! The biggest threat now is the potential for infection if he does not follow carefully and precisely the hygienic procedures for administering the dialysis. He discards all his tubing every day after use, and must abide by some very specific and intentional procedures to start the process every night. He must plan to be on the machine initially for around 9 hours a night which will mean an adjustment to his “student lifestyle”. Furthermore, after two nights, he is realizing the sleep process will take some adjustments and getting used to. His first couple of nights have not been great, dealing with fluid being pumped into him (about 2 liters-worth) and then being pumped out. The weight of the fluid and the space it takes up in his abdomen is not too comfortable as he attempts a full night’s sleep. The positive is, though, he should be able to have more “normal” days and a more flexible diet.

As for our spirits, the nurses and all that have attended to Nate marvel at his attitude and his cheerful spirit and for that we thank God and many of you who have helped to establish a strong foundation of faith and trust in God through your own “pouring concrete” into his life. Nate’s life has been built on a firm foundation through the many contributions of his friends and family and youth leaders over the years and we are humbled at such a “work crew”. We are inspired to do what we can to “pour it forward” as God gives us the strength and ability to speak of God’s faithfulness and grace and mercy to others who may be going through similar situations. God has not abandoned us in all of this, but to the contrary, has shown us the result of the years of living as part of a faithful community of believers that compels us to say along with Mordicai, that maybe we were have been placed where we are “for such a time as this” to bear witness to God’s power and faithfulness. Already, we marvel at the numerous medical procedures that have helped to maintain Nate’s life and we marvel at the incredible physiological workings too wonderful to comprehend. Doctors and others think they know something, but it merely scratches the surface and yet it is far beyond what most of us understand about the human body. We are encouraged by their experience and knowledge, yet we trust in the name of the Lord our God to see us through! Nevertheless, we have all had our “moments” of  anxiety, distress and frustration, but given the circumstances, we all are holding up fairly well. This is as much a testimony to your prayers and encouragement and sharing of concern for our lives as we go through this that we are so grateful to know we are not going through this alone. Again, the community/family of faith is a powerful presence in our lives. Thanks for being there.

Well, this is it for now. We continue to make adjustments and find God faithful in sustaining us. We trust likewise, that you are finding Him equally faithful to whatever place you are at with God as well. Keep up the faith and fight the good fight. Keep in touch as you are able, we appreciate the notes.

Shalom,

John

Btw, many of you know our daughter Hannah is now serving in Chaing Mai, Thailand for two years. You can follow her adventure on her blog : www.PurposefulDiscomfort.blogspot.com and if you ever care to become more involved you can check out her web address for donations by going to  www.WorldOutreach.org/donatations  and select Hannah Bechtold #273

Update 11

Well, it has been a while (2.5 weeks) since an update and I thought I would take this opportunity on a Friday afternoon to share a bit about what has been going on. Nate has been consistent in going to dialysis MWF and that has its ups and downs. For example, on the 17^th Nate had retained so much fluid over the weekend that he could hardly get out of bed or breath easily. So, being concerned, he called his doctor and they got him right in to dialysis that morning instead of the afternoon. That day, they took off 12 pounds of fluid in the matter of a few hours. That’s about a gallon and a half of milk weight-wise (gal Milk/8.5 lbs.).  This dialysis is most dramatic on Mondays when he has gone an “extra” day without dialysis and so retains a bit more fluid-which means over a week-end, we must be especially careful to manage his fluid intake. Then, last week he also had another round of chemotherapy to help kill off the white blood cells that seem to be attacking his kidneys. Seven to ten days after the chemo is when he is most vulnerable, having his immune system so suppressed due to the chemo. Unfortunately there are other side effects and other procedures related to the administering of the chemo that make me question whether the “cure” is worse than the illness. Thankfully, Nate seems to have weathered the chemo so far, although there have been a couple of days of discomfort and struggle to go to class. In about another week, we think he will go through this again for the third and possibly final time.

Some good news along the journey is that Nate is uriNATE-ing much greater than he ever did in the hospital during that first stressful week of this ordeal, and doing so on a regular basis… we thank God for this bit of normalcy in all of this, even though it is not clearly certain if his kidneys are doing much to influence this amount. Thanks to tons of you who have asked and are continuing to urinate with Nate in mindJ! Furthermore, the doctor has cut back on his steroid treatment and that has helped to reduce the amount of fluid he is retaining and he has found the right kind and dosage of medicine to keep his blood pressure down. All of this is to say that through this all, God has been faithful and sustaining.

Although we try to focus on the good and are bolstered by your encouragement and thoughts and prayers, I am beginning to realize that over the long haul (and it really hasn’t been that long… just a little over a month and a half) these sorts of situations do begin to take its toll. I can much more fully appreciate the patience and longsuffering that many individuals and families go through with chronic conditions and I marvel at God’s sustaining power… will it be enough to get US through? I believe, yes, but it is not without its share of doubt (many of you know that when it comes to medical stuff, I am a major wimp). Nonetheless, it is good to know of such a cloud of witnesses surrounding us and daily finding God faithful with the strength to make it through all the events of a day, and still find laughter and joy when we are together as a family and also when we are around many of you. Laughter truly is medicinal and I can’t imagine where our family would be without it. It is hard not to smile when I share with delight the “pee report” as if daily urination is equivalent to the Olympic medal count. Little victories DO add up to big victories of God’s care for us!

Upcoming events for Nate… he will have another round of chemo this Thursday and we now have an appointment with the Kidney Transplant team at Johns Hopkins set for the first of April. In another two weeks, we hope that we will be transitioning Nate off of three-day-a-week dialysis and to nightly dialysis in the home. As I said, this journey has its ups and downs… Nate is attending school, but he is not quite “normal Nate” in class, but he is hanging in there. Thanks again for connecting with God on our behalf. We wait expectantly for glimpses of his Glory through all of this.

Shalom,

John

Btw: We celebrated Nate’s 21^st birthday Feb. 28!