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| Most Recent Updates May 2003 |
| May 20 - 11:00 am - They have started dialysis. They are hoping this might help him turn around. He is requiring more and more support. Maybe today is the day for the miracle that we have been praying for. Rob May 19 - 7:40 pm - The new drug seems to be helping Jason's heart rate and blood pressure. His urine output has not picked up enough to be significant yet but we will keep on hoping. - Rob May 19 - 10:00 am - Jason is holding his own. His kidney failure is the most critical problem. They are going to try a new drug today that has worked well in adults, but has not been used much in children yet. The Acute Respiratory Distress Syndromw(ARDS) was supposed to peak in 7-10 days, but we are in day 12 and he has not shown any signs of getting better yet. We just hope and pray. One day at a time. - Rob May 18 - 8:35 pm - No change from this morning. Still no urine - Rob May 18 - 12:45 pm - The good news is that the doctors think that Jason's condition has plateaued. The bad news is that he will stay on the plateau for 3-4 days before he starts to get better. He continues to have no urine output. They have tried 2 drugs to "jump start" them with no luck yet. If they have to do dialysis, they will, but they are concerned that his heart can't take the additional stress. One day at a time. Rob May 17 - 5:20 pm - Except for no urine, no real change in Jason's condition. Rob May 17 - 10:25 am - The good news this morning is that Jason's white cell count has fallen from 90,000 to 77,000. If this continues it will mean that his body is starting to believe that it is recovering. This should reduce the inflammation and the swelling. The bad new is that his kidney's have shutdown. Hopefully they will start working better soon. Rob May 16 - 7:10 pm - No change from this morning. More waiting and hoping. Rob May 16 - 12:00 pm - Today is day 4 of things being basically the same. We are all just waiting for his body to signal that it is getting better. It is long hours of waiting. Right now just doing the same is good enough. We can't go on like this forever, but hopefully we won't have to. - Rob May 15- 8:00 pm - Jason has been doing relatively the same. They tried to challenge him a bit and get some of the fluid off with some Lasix, but he did not like that so they had to stop the Lasix and give more fluid. He is still doing better though as they are only replacing half of what is coming out. Infectious disease has been involved to figure out how/why he got this so they are doing a number of different tests. His white count is up, but his lymphocytes (one type of white cell) are down and that is puzzling them. We did also find out that the fungus can also be living in his new blood clot that grew over his fenestration. If continuing blood cultures come out negative, then we should be clear of the fungus, but it will take 4-5 days for those cultures to come back. The doctor says that Jason should be on the iv antifungal for at least 4-6 weeks. Things are slow, but I think everyone is more comfortable than they were 3 days ago. Jason seems to really like lying on his belly, so he spends much of the day like that. They are also ace wrapping his legs to push some of the fluid out. May 15 - 10:00 am - Jason's Chest X-ray is no different than before. They put in a new central IV yesterday. His white count is still going up so we don't know if the source of the infection has been removed. The only source left is the plastic shunt that they put in during the surgery. If the infection has not resolved a week from now, we will have to think about replacing the shunt. @#!@##!@!!! Today they are going to try to get some of the fluid off. He still has about 6 or 7 pounds of extra fluid. No steps back so far today!!! Please let me know if this page is still crashing. More later - Rob May 14 - 10:20 am - Jason's Chest X-ray showed that his lung are no worse than yesterday and maybe a little better. That is really big. His central IV tested positive for the same infection today, so they are going to put in a new line. They have changed his antifungal medication and to one that will not affect his liver. We hope that we are over the hump, but only time will tell. Rob May 13 - 5:40 pm - They have finally gotten a poitive culture for Candida. This means that they can check and make sure the strain he has is not resistant to the anti fungal that he is on. This is good news, but it probably does not change the situation. Hopefully, today is the worst day and tomorrow will be better. Rob May 13 - 10:30 am - Jason had relatively good night. He continues to require a tremendous amount of support, but his relatively stable. His major organs are still doing OK, but his lungs got worse from yesterday. We need to just keep praying that he can turn a corner in the next few days. Keep the faith - Rob May 12 - 9:30pm - Jason is relatively stable. He continues to fight the infection. A little good news tonight...the best set of stats from bloodwork came back late tonight, that brought a short smile as they settled in for the evening. Hope he has a good night. - Uncle Geof May 12 - 12:00pm - Jason's Acute Resporatory Distress is most likely being caused by a systemic fungal infection called "Candida"(SP?). The doctors say that his major organs have weathered the first hit of the infection, but his lungs are still getting worse. The next day or two, his lungs should peak and then maybe Jason will start to get better. More later tonight - Rob |
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