From Julian's COTA Journal.
Happy New Year everyone! Lots of news this time - I'll try to be brief.
Stacy and Julian came back from Phoenix on December 27th, and on the 28th (which happens to be our wedding anniversary) Julian got sick. As in, violently throwing up every twenty minutes for 6+ hours, starting at about 10 p.m. Rough night. We went to Children's for labs on Saturday, after it seemed like Julian had rallied. Later that night, however, it became clear that he was still sick. On Sunday, we took him back to Children's, this time to the ER, because we were afraid he was becoming dehydrated. The nurses attempted to give him in IV in 7 (seven!) different places, but they kept blowing the veins. The next option was an IV in a peripheral jugular vein. At this point Julian was exhausted - I'm sure he thought he was being tortured - and we asked if there were any other options. The docs suggested an anti-nausea med, and we tried to feed him. Thank God - he kept it down. So, we took him home, and Stacy and I (mainly Stacy - have to give credit where it's due) rehydrated Julian orally: 5ml of fluids every 6 minutes or so, for hours. It worked. Julian recovered, and although the virus lingered for over a week, we're happy to report that he's back!
So, the other big news is that we went back to Children's this past Monday to resume dialysis training. We arrived, checked in, got Julian settled, hooked him up to the machine and pressed GO. And nothing happened. The machine was unable even to fill Julian with the dialysis fluid. This is very unusual - normally when there are problems, it's on the drain cycle. We tried for over an hour to initiate the fill cycle, but it would simply not go. So, the docs ordered an xray, and discovered that the catheter had again migrated up in his abdomen. We also reviewed his labs from that morning, and discovered that his labs were surprisingly good, especially considering his recent bout of illness. What to do? The docs were recommending a surgical repositioning of the catheter, but Stacy and I had a different feeling about the matter. So, after some deliberation, we decided that instead of surgically repositioning the catheter, we'd remove it and go back to managing through supplements and dietary regulation. The long and short of it is that there are more than one philosophy re: the treatment of someone in Julian's condition, even within the medical community. We think that through closer attention to what Julian is eating on a regular basis, we can bring his lab values back into acceptable ranges. Of particular concern are his creatinine level, as well as his parathyroid hormone (PTH). High PTH levels may be an indication of advancing levels of bone disease, and Julian's has been as high as 1400. The docs want to see it below 300. Right now it's in the 600+ range, so we're hoping and praying that we can bring it back down.
So, that's the news. Stacy takes Julian back for labs tomorrow, so we can see how we're doing. The dialysis catheter is still in, so we're still caring for it, but we're waiting for the docs to schedule the removal surgery.
At the end of the month, we're taking Julian to the Children's Hospital at Stanford University in Palo Alto, CA, for a transplant evaluation there. They have a transplant protocol that employs steroid-free anti-rejection medications post-surgery, with significant rates of success. This is a very big deal, as steroids can have some pretty serious long-term side effects. We'll post more info as it becomes available, but for now, just pray that the visit goes well. O, and they've indicated that the wait may be as short as 4-6 months for an organ, so that's a big deal too (we're currently on the list here in Colorado, which may be 1-2 years). The sooner we can get the transplant done, the better. All things in God's time though, no matter how much we may want to rush.
Julian would like to contribute to this blog entry, so here he is...
Okay, that's enough for now. Good night, from all of us.