We have had a crazy few days! On Sunday night Raul didn't sleep, literally. He was agitated the whole night despite MANY medications. He finally fell asleep around 7/8am. So we decided later that morning to do a planned move to the ICU for a day to start him on precedex and then start weaning some of the other sedatives he was on. We thought it was best to do it in a planned way rather than in the middle of the night while he was freaking out if we had another bad night.
We have trouble getting accurate blood pressures while he is agitated as he stiffens his body, so that morning he got medicine for a high blood pressure that might not really have been quite as high. Then he calmed down, and we started dialysis, and his blood pressure dropped a lot. He was able to get a blood transfusion and run for three hours with the aide of Dopamine, but they were not really able to pull any fluid without lowering his BP too much. We finished dialysis before heading to the PICU, but it seemed good that we had already had that planned! The precedex he was starting can lower blood pressure, so we waited until later in the evening to start that.
When we got down here they put him on high flow oxygen instead of the mask to help him breathe a bit easier (he is back on the mask today), and did a chest xray and EKG that looked okay. He had some labs that might have been concerning for infection and/or increased oxygen needs, but those improved later in the day. He stayed on the dopamine for his blood pressure until around midnight, and has been off it since. His blood pressure dropped a bit during dialysis today too so they only pulled a little fluid and again just did three hours. He did not receive any blood pressure medications today so we are hoping that will level out a bit.
Last night he started having blood in his stool around 9pm. This had not been happening the past few days, so they ran a few tests. First they checked his G and J tubes for blood, but they only showed a bit of old brown blood. Nothing fresh, and not a lot. Then they did abdominal x-rays, which didn't really show anything. He had several diapers with blood, so then they also did an abdominal ultrasound. There they found a little small bowel intussusception as well as a small intussusception at his J tube. Surgery was consulted, but at that time just recommended putting his g tube to suction and venting his J tube, and discussed switching out the tube.
He had a repeat ultrasound at 7am that did not show the small bowel intussusception, but did still show the GJ tube one. So at rounds we decided to pull the GJ tube (which they did bedside) and replace with a regular G tube. This should get rid of the intussusception there as there will be nothing for the intestine to telescope around. It could reoccur if we replaced the GJ tube, so we are hoping he will just tolerate G feedings. GJ tube intussusception is quite common, and is a risk the GI doctor had discussed with us before we switched to the GJ tube a few months ago. Hopefully now his belly has had more time to heal since transplant and he will tolerate formula through the regular g-tube.
He had bloody stool through the night to varying degrees, which GI thought might be a lot for only a small intussusception so they were concerned about a Meckel's diverticulum. If he had this, it would need to be fixed surgically, which would be risky for him due to his EB and long term steroid use causing healing problems. This afternoon he had a Meckel scan done, and thankfully it was negative! We don't know for sure where the blood was from, but it isn't too unusual for EB patients to have some bleeding at times. He has not had blood in his diaper today, so we are hoping that has resolved. If his diapers continue to be okay and he stays otherwise stable, we are hoping to go back to the BMT floor tomorrow!
We have now accomplished what we originally planned to come down for and then some! Thankfully the precedex does seem to be helping, as he slept well last night and through most of the day today. He has a lot of missed sleep to make up for! When he is awake he has been looking pretty alert, even with all the sedatives, which is good.
We have trouble getting accurate blood pressures while he is agitated as he stiffens his body, so that morning he got medicine for a high blood pressure that might not really have been quite as high. Then he calmed down, and we started dialysis, and his blood pressure dropped a lot. He was able to get a blood transfusion and run for three hours with the aide of Dopamine, but they were not really able to pull any fluid without lowering his BP too much. We finished dialysis before heading to the PICU, but it seemed good that we had already had that planned! The precedex he was starting can lower blood pressure, so we waited until later in the evening to start that.
When we got down here they put him on high flow oxygen instead of the mask to help him breathe a bit easier (he is back on the mask today), and did a chest xray and EKG that looked okay. He had some labs that might have been concerning for infection and/or increased oxygen needs, but those improved later in the day. He stayed on the dopamine for his blood pressure until around midnight, and has been off it since. His blood pressure dropped a bit during dialysis today too so they only pulled a little fluid and again just did three hours. He did not receive any blood pressure medications today so we are hoping that will level out a bit.
Last night he started having blood in his stool around 9pm. This had not been happening the past few days, so they ran a few tests. First they checked his G and J tubes for blood, but they only showed a bit of old brown blood. Nothing fresh, and not a lot. Then they did abdominal x-rays, which didn't really show anything. He had several diapers with blood, so then they also did an abdominal ultrasound. There they found a little small bowel intussusception as well as a small intussusception at his J tube. Surgery was consulted, but at that time just recommended putting his g tube to suction and venting his J tube, and discussed switching out the tube.
He had a repeat ultrasound at 7am that did not show the small bowel intussusception, but did still show the GJ tube one. So at rounds we decided to pull the GJ tube (which they did bedside) and replace with a regular G tube. This should get rid of the intussusception there as there will be nothing for the intestine to telescope around. It could reoccur if we replaced the GJ tube, so we are hoping he will just tolerate G feedings. GJ tube intussusception is quite common, and is a risk the GI doctor had discussed with us before we switched to the GJ tube a few months ago. Hopefully now his belly has had more time to heal since transplant and he will tolerate formula through the regular g-tube.
He had bloody stool through the night to varying degrees, which GI thought might be a lot for only a small intussusception so they were concerned about a Meckel's diverticulum. If he had this, it would need to be fixed surgically, which would be risky for him due to his EB and long term steroid use causing healing problems. This afternoon he had a Meckel scan done, and thankfully it was negative! We don't know for sure where the blood was from, but it isn't too unusual for EB patients to have some bleeding at times. He has not had blood in his diaper today, so we are hoping that has resolved. If his diapers continue to be okay and he stays otherwise stable, we are hoping to go back to the BMT floor tomorrow!
We have now accomplished what we originally planned to come down for and then some! Thankfully the precedex does seem to be helping, as he slept well last night and through most of the day today. He has a lot of missed sleep to make up for! When he is awake he has been looking pretty alert, even with all the sedatives, which is good.
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