Friday, November 14, 2008

01.25.2008 - Update

From Julian's COTA Journal.

Yesterday we took Julian to Children's in Denver for a regular follow-up appointment at the Kidney Center. Julian's labs look very good right now, and he's full of energy. On top of that, he's been eating like he's never eaten before, possibly to make up for his illness earlier this month, but partly (we believe) because of the new approach we're taking to administering his meds and supplements. Basically, we're giving him his meds straight up, instead of mixing it in with his food. That way, we have tighter control over when he gets them, and we can be sure he's getting his full dose every time. But seriously, the boy is putting the food away! He's averaging something like 1200 calories a day right now, but last week he had several days at 1500+! When we take into account that pre-illness, we were grateful for anything over 600 calories a day, we're considering this a minor miracle!

So, he's growing, and his PTH (see the January 9th entry) is 308 presently. Not quite below 300, but very close, and still falling. Creatinine is back up to 4.2, and BUN is up to 84 - twice what it was a couple weeks ago. That's a little troublesome, but it doesn't seem to be affecting his demeanor or quality of life. If we can manage that through diet (we spoke with his Dietitian yesterday about that too), we should get that back to a more normal level.

Overall, Julian is doing very well. So much so that his Dr. asked us when we wanted to take the dialysis catheter out. Julian's quality of life is not what it was pre-catheter, and there's a possibility of infection or complication if we leave it in, so we're excited to have it taken out. That will happen next Wednesday January 30th. Please pray that all goes to plan.

And finally, tomorrow, we take Julian to San Francisco to the Children's Hospital at Stanford University. Re-read the January 9th entry for more info on that trip as well. We'll do all the touristy things over the weekend (I've never been there before), then on Monday we have appointments all day with the various teams who may be involved in Julian's transplant and subsequent care. We fly back on Tuesday - just in time for surgery on Wednesday.

Busy week.

A special thanks goes out to my employers, Moore & Bishton Architects in Longmont, CO. They've been incredibly supportive of our family and flexible with my work schedule, which has allowed me to go to all these appointments, trips and surgeries. I can't imagine not going to any of these things, but one can never take that kind of consideration for granted. Thanks Tom & Dave.

That's it for now. I'll post more when the dust settles.