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It's been a very long day.
Ben was taken upstairs to the Pediatric ICU a little after noon today. From there we waited until nearly 1:45 before the PICC team arrived to insert the new line. The procedure itself went very smoothly. Afterward we waited for a portable chest x-ray to be done, to verify the placement of the line. It showed that the line needed to be pulled back by two and a half centimeters (which is not unusual), and we had to wait for someone from the PICC team to come back and do that. And we waited. And we waited. While we were waiting, both the hematologist and the GI doctors came in and talked to us. More on that later. Eventually it became apparent that the PICC team was going to be substantially delayed, so they sent Ben back down to his regular room. Finally someone showed up at about 6pm and the line was adjusted. Another chest x-ray was taken at 7:30, and we are still waiting for the results. Until the results come back, the new PICC line cannot be used. Ben got a dose of the pain medication a while ago, plus the steroids, plus his anti-anxiety medicine in his juice, plus a vitamin B-12 injection. But he can't get his nutrient IV started yet, nor have the blood draw done that he needs. Still waiting.
Regarding the doctor visits, the hematologist said that Ben was low in B-12, and he will be getting intra-muscular injections of it for the next five days to bring the levels up. He is also testing the Factor 7 and Factor 10 blood clotting factors with the next blood draw, to see if they have improved. Nothing life-threatening there, and nothing that can be treated, we will just need to know for future reference whether or not those two factors are impaired in the long term in case Ben ever needs to have a blood transfusion, so that the doctors can adjust for those factors.
The GI doctor talked to us about the results from yesterday's CT scan. The scan did not find any cysts or hematomas, which is good. It also found that the pancreas is still inflamed the same way it was two weeks ago, so no improvement has been made there. The big thing was that she found that one of the ducts in the pancreas was larger than it should be, and larger than it was two weeks ago. She had noticed it was slightly enlarged after the first scan, but had attributed it to the general inflammation of the pancreas. Since it has enlarged even more, this means that we need to get a good look at those ducts. This is the ERCP test I mentioned a few days ago. Back then when she brought it up, it seemed like it was a test she wanted to do because she had run out of other things to try. With this additional information from yesterday's CT scan, now it seems like a practical thing. Unfortunately, there are very few people qualified to do this test on a child, and very few hospitals with the appropriate equipment. Being Friday, it is too late to start a process before the weekend but first thing Monday she will start talking to the doctors up at Shand's Hospital in Gainesville. Odds are he will be moved there on Tuesday or Wednesday, taken up by ambulance. Sara will ride along in the ambulance, and I will drive up separately so we have a car. I have no idea how long we will be there, it all hinges on the results from the test. The best case scenario is that they find a small stone blocking the end of the duct, they remove it during the procedure, and a few days later he is healthy. Obviously that is what we are hoping for. If nothing else, at least we finally have a promising line of reasoning to troubleshoot and move closer to an answer.
Sara was supposed to go home tonight and get some rest, but she has elected to stay at the hospital. I gather she intends not to leave the hospital again. The data points from her point of view are that while she has been here Ben has never even come close to pulling out his PICC line. While I have been alone with him he managed to almost get it out a few days ago, and then pull it completely out last night. While it is perfectly true that both of those events could just as easily have happened on her watch and not mine, I can't fault her for not wanting to leave. If our roles were reversed I would feel exactly the same way, so I am not the least bit offended.
Ben is still awake and watching tapes, but he seems to be winding down quickly. If we can just get that IV started, I think he will drop off pretty quickly. Hopefully it will be a quiet and uneventful weekend.
Ben was taken upstairs to the Pediatric ICU a little after noon today. From there we waited until nearly 1:45 before the PICC team arrived to insert the new line. The procedure itself went very smoothly. Afterward we waited for a portable chest x-ray to be done, to verify the placement of the line. It showed that the line needed to be pulled back by two and a half centimeters (which is not unusual), and we had to wait for someone from the PICC team to come back and do that. And we waited. And we waited. While we were waiting, both the hematologist and the GI doctors came in and talked to us. More on that later. Eventually it became apparent that the PICC team was going to be substantially delayed, so they sent Ben back down to his regular room. Finally someone showed up at about 6pm and the line was adjusted. Another chest x-ray was taken at 7:30, and we are still waiting for the results. Until the results come back, the new PICC line cannot be used. Ben got a dose of the pain medication a while ago, plus the steroids, plus his anti-anxiety medicine in his juice, plus a vitamin B-12 injection. But he can't get his nutrient IV started yet, nor have the blood draw done that he needs. Still waiting.
Regarding the doctor visits, the hematologist said that Ben was low in B-12, and he will be getting intra-muscular injections of it for the next five days to bring the levels up. He is also testing the Factor 7 and Factor 10 blood clotting factors with the next blood draw, to see if they have improved. Nothing life-threatening there, and nothing that can be treated, we will just need to know for future reference whether or not those two factors are impaired in the long term in case Ben ever needs to have a blood transfusion, so that the doctors can adjust for those factors.
The GI doctor talked to us about the results from yesterday's CT scan. The scan did not find any cysts or hematomas, which is good. It also found that the pancreas is still inflamed the same way it was two weeks ago, so no improvement has been made there. The big thing was that she found that one of the ducts in the pancreas was larger than it should be, and larger than it was two weeks ago. She had noticed it was slightly enlarged after the first scan, but had attributed it to the general inflammation of the pancreas. Since it has enlarged even more, this means that we need to get a good look at those ducts. This is the ERCP test I mentioned a few days ago. Back then when she brought it up, it seemed like it was a test she wanted to do because she had run out of other things to try. With this additional information from yesterday's CT scan, now it seems like a practical thing. Unfortunately, there are very few people qualified to do this test on a child, and very few hospitals with the appropriate equipment. Being Friday, it is too late to start a process before the weekend but first thing Monday she will start talking to the doctors up at Shand's Hospital in Gainesville. Odds are he will be moved there on Tuesday or Wednesday, taken up by ambulance. Sara will ride along in the ambulance, and I will drive up separately so we have a car. I have no idea how long we will be there, it all hinges on the results from the test. The best case scenario is that they find a small stone blocking the end of the duct, they remove it during the procedure, and a few days later he is healthy. Obviously that is what we are hoping for. If nothing else, at least we finally have a promising line of reasoning to troubleshoot and move closer to an answer.
Sara was supposed to go home tonight and get some rest, but she has elected to stay at the hospital. I gather she intends not to leave the hospital again. The data points from her point of view are that while she has been here Ben has never even come close to pulling out his PICC line. While I have been alone with him he managed to almost get it out a few days ago, and then pull it completely out last night. While it is perfectly true that both of those events could just as easily have happened on her watch and not mine, I can't fault her for not wanting to leave. If our roles were reversed I would feel exactly the same way, so I am not the least bit offended.
Ben is still awake and watching tapes, but he seems to be winding down quickly. If we can just get that IV started, I think he will drop off pretty quickly. Hopefully it will be a quiet and uneventful weekend.