Good News and Bad News

Four weeks have passed since I last posted. Katie continues to heal with great success. Her creatinine is absolutely normal!! She is making fantastic progress, even reducing some of her medications. She "graduated" this week from once-a-week clinic appointments to once-a-month visits. Katie will still have to have her blood drawn each week for monitoring, but won't need to see the docs unless there is a problem. She is already picking out classes for the fall semester and is excited about getting back into life! This is the miracle of organ donation! How grateful we are to Kelly!!

Unfortunately, the report for Samuel isn't so exciting. He really hasn't been well since he was discharged from the hospital in February. He has been battling Clostridium difficile (C. dif), an overgrowth of bad bacteria in his gut, and has been through several courses of antibiotics in an attempt to knock it out. He has also been plagued by debilitating back pain and nausea. He has just been one sick boy! His labs have gotten progressively worse as his kidney function has declined. We've known for a few weeks now that Samuel was headed back to dialysis, we just didn't know exactly when that would be.

Last week on Friday, Samuel had to take a special medication because his potassium was dangerously high. On Monday this week, with a creatinine of 4.62 and his potassium and phosphorus high, Dr. G. gave Samuel the option of starting dialysis that day or the next. He chose to wait a day. It was quite a disappointment for Samuel (and all of us!). He was pretty quiet and withdrawn most of the day, but by dinner he was back to laughing and enjoying his sisters.

On Tuesday, May 13th, Samuel went in to the hospital to have another catheter placed in his chest. He was the most relaxed and chatty in pre-op that I've ever seen him. He told me all about the latest book he was reading until his throat got so sore that he had to stop talking! The procedure of placing the ash split catheter took just under an hour. Samuel was in the recovery room only a short time before they rolled him up to dialysis still asleep. The dialysis nurses welcomed us with smiles and hugs. The same nurse who did Samuel's very first dialysis run back in March '07 was there to do his 120th session!

After three dialysis sessions this week, Samuel still isn't feeling much better. He is having a hard time getting comfortable with the new catheter. He continues to sleep a good part of each day and has no appetite. He is discouraged with the whole scene and is losing confidence in the medical team. He just wants to feel better! He had a bit of a fever when he went to bed tonight, so we'll have to wait and see what tomorrow brings.

I'm trying to psyche myself up for the ol' three-days-a-week-to-the-hospital routine. It is a hard schedule for everyone in the family. I would ask you to pray for us as we make the adjustments and especially for Samuel as he struggles physically and emotionally.

Thank you!