Yesterday marked seven months inpatient here in MN! Raul continues to have fevers, though went quite a while during the day yesterday without one. We re-started him on cipro, as his BK viral level had increased. His sodium has been quite high, so Endocrinology had us increase the amount of water he gets with his formula and also recommended checking his thyroid. They said he does not have diabetes insipidus, which had been questioned due to potential neurological damage from his cardiac arrest. Since adding the increased water his sodium has been in normal range. We will be seeing neurology again this week, though I'm not sure how much more they will have to add at this point.
Friday we stopped dialysis at three hours instead of four, as he got really agitated. When he gets agitated his breathing gets labored, and they tend to check lactic acid and blood gasses during that time. His lactic acid has been high, but everything else has been decent. I think the consensus is that when he gets agitated he breathes fast, which raises his lactic acid, then because of kidney failure he can't clear it as quickly as someone else would. Yesterday we only stopped dialysis 13 minutes early for agitation, and he was actually .1kg below his normal dry weight, so it turned out to be good we stopped!
The past few nights Raul has slept better, after being awake most of Thursday night (not agitated, just awake). He has been sleeping in pretty late in the morning too. Last night as we were getting ready for bed he gave us a bit of a scare. The lights were already off, but I noticed his arm bandage was bloody when I had just changed it earlier that day, so I turned them back on to check what was bleeding. With the lights on I could see that he was in a fairly large puddle of blood that had come from his upper arm wound. The nurse and doctor came in and we got the spot to stop bleeding by holding pressure, then putting thrombin powder on it as well before re-bandaging. It was a tiny spot that was bleeding, but bled a ton (5-6 ounces). Thankfully he had just gotten a blood transfusion, and was getting platelets at the time. This morning Dr. Tolar asked me some questions about the spot, and he thinks it is likely a vein, so if it happens again we will do a dye study through his PICC line. For now we will just check that spot frequently to make sure it isn't bleeding again!
We are looking into one specific medication now to hopefully help Raul's "extreme" inflammation in his body. The medication is intended for two different conditions, so a panel at the company will have to decide if it is appropriate for Raul. Dr. Tolar hasn't used it for EB patients before, but successfully used it recently for a patient with a different condition. We would hopefully be able to get it in the next week, but I am not sure how quickly they would expect to see a change.
Friday we stopped dialysis at three hours instead of four, as he got really agitated. When he gets agitated his breathing gets labored, and they tend to check lactic acid and blood gasses during that time. His lactic acid has been high, but everything else has been decent. I think the consensus is that when he gets agitated he breathes fast, which raises his lactic acid, then because of kidney failure he can't clear it as quickly as someone else would. Yesterday we only stopped dialysis 13 minutes early for agitation, and he was actually .1kg below his normal dry weight, so it turned out to be good we stopped!
The past few nights Raul has slept better, after being awake most of Thursday night (not agitated, just awake). He has been sleeping in pretty late in the morning too. Last night as we were getting ready for bed he gave us a bit of a scare. The lights were already off, but I noticed his arm bandage was bloody when I had just changed it earlier that day, so I turned them back on to check what was bleeding. With the lights on I could see that he was in a fairly large puddle of blood that had come from his upper arm wound. The nurse and doctor came in and we got the spot to stop bleeding by holding pressure, then putting thrombin powder on it as well before re-bandaging. It was a tiny spot that was bleeding, but bled a ton (5-6 ounces). Thankfully he had just gotten a blood transfusion, and was getting platelets at the time. This morning Dr. Tolar asked me some questions about the spot, and he thinks it is likely a vein, so if it happens again we will do a dye study through his PICC line. For now we will just check that spot frequently to make sure it isn't bleeding again!
We are looking into one specific medication now to hopefully help Raul's "extreme" inflammation in his body. The medication is intended for two different conditions, so a panel at the company will have to decide if it is appropriate for Raul. Dr. Tolar hasn't used it for EB patients before, but successfully used it recently for a patient with a different condition. We would hopefully be able to get it in the next week, but I am not sure how quickly they would expect to see a change.
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