Posted by Becky
Leif's got another dose of Rituxan today. He had some shortness of breath right off the bat, so they dialed the rate back slower. They give him a ton of Benadryl beforehand (standard procedure) so he gets very sleepy, and although he hasn't had a severe reaction lately, it still makes him feel rotten. He got some Reiki during the dose from one of the hospital bodywork volunteers. which he enjoys, and which always relaxes him.
The big worry today is that the blood leak hasn't stopped yet. The doctors said during morning rounds that a radiation oncologist and an intervention radiologist would come by to see him today, in case they need quick options tomorrow if the current treatments (platelets and aminocaproic acid, which encourages clotting) don't control the bleeding. The believe it is a venous leak from his spleen, since the blood loss is relatively slow. The radition people didn't turn up today, so maybe tomorrow. It is possible to radiate the spleen, or go through an artery in his leg and stick a "clot" into his spleen. Scary. Of course they don't want to do anything surgical with his platelets so low.
The sore on his butt is a bit less painful today; still looks red and angry, but no fever. It was draining but now seems to have stopped. They feel they have him on the right antibiotics, and no surgical intervention is necessary, or at any rate would be a bad idea at the moment. His neutrophils are still zero. He just got a unit of platelets and is about to get one of blood; he also got a unit of each this morning before the Rituxan dose (which, since it runs so slowly, takes about 6 hours to go in). They are continuing to check his blood levels every six hours, which will help them tell whether the internal bleeding has clotted, as well as whether he needs additional blood or platelets.
The swelling in his legs and feet has gone down a lot. The Sequential Compression Device (which I described yesterday) and compression stockings seem to be helping that, but it's also going down in his knees and upper legs, which are not being squeezed. No fever today.
He has continued to take walks at least twice a day; one long walk (15-20 minutes) around the hospital building for a change of scene, and at least one short one around the "pod" where his room is. Unfortunately, he can't go outside with his neutrophils so low, which as you can imagine, is stressful for Leif since he loves to be outdoors. No exercise bike today since he was feeling so wiped out from the Benedryl and Rituxan. We have bread, jam, peanut butter, yogurt etc. for snacks, so he tries to get out to the pod kitchen to prepare his own snack at least once a day. He's careful to wear a mask anytime he leaves his room. They also had a bowl of Halloween candy at a nursing station, so he was able to get some mini candy bars.
Leif's got another dose of Rituxan today. He had some shortness of breath right off the bat, so they dialed the rate back slower. They give him a ton of Benadryl beforehand (standard procedure) so he gets very sleepy, and although he hasn't had a severe reaction lately, it still makes him feel rotten. He got some Reiki during the dose from one of the hospital bodywork volunteers. which he enjoys, and which always relaxes him.
The big worry today is that the blood leak hasn't stopped yet. The doctors said during morning rounds that a radiation oncologist and an intervention radiologist would come by to see him today, in case they need quick options tomorrow if the current treatments (platelets and aminocaproic acid, which encourages clotting) don't control the bleeding. The believe it is a venous leak from his spleen, since the blood loss is relatively slow. The radition people didn't turn up today, so maybe tomorrow. It is possible to radiate the spleen, or go through an artery in his leg and stick a "clot" into his spleen. Scary. Of course they don't want to do anything surgical with his platelets so low.
The sore on his butt is a bit less painful today; still looks red and angry, but no fever. It was draining but now seems to have stopped. They feel they have him on the right antibiotics, and no surgical intervention is necessary, or at any rate would be a bad idea at the moment. His neutrophils are still zero. He just got a unit of platelets and is about to get one of blood; he also got a unit of each this morning before the Rituxan dose (which, since it runs so slowly, takes about 6 hours to go in). They are continuing to check his blood levels every six hours, which will help them tell whether the internal bleeding has clotted, as well as whether he needs additional blood or platelets.
The swelling in his legs and feet has gone down a lot. The Sequential Compression Device (which I described yesterday) and compression stockings seem to be helping that, but it's also going down in his knees and upper legs, which are not being squeezed. No fever today.
He has continued to take walks at least twice a day; one long walk (15-20 minutes) around the hospital building for a change of scene, and at least one short one around the "pod" where his room is. Unfortunately, he can't go outside with his neutrophils so low, which as you can imagine, is stressful for Leif since he loves to be outdoors. No exercise bike today since he was feeling so wiped out from the Benedryl and Rituxan. We have bread, jam, peanut butter, yogurt etc. for snacks, so he tries to get out to the pod kitchen to prepare his own snack at least once a day. He's careful to wear a mask anytime he leaves his room. They also had a bowl of Halloween candy at a nursing station, so he was able to get some mini candy bars.
Can't think of anything witty or uplifting to say, but thinking of you both with love, zombies, and interstellar warp drives.
ReplyDeleteMike
Becky,
ReplyDeleteI wish I could write memos so concise, easy to read, yet detailed as your Leif status updates. Some of my co-workers tell me I do technical writing very well, but when I go back and read my own emails I must admit that I'm not even in your league.
I'm slowly realizing that in complex technical fields, communication is probably the most important factor in obtaining good outcomes. Hyper-skilled professionals are valuable, but they're still nearly worthless if they act as lone rangers. I think you're exceptionally gifted at communicaing with lone rangers (possibly since you learned on your brother, who has been one for most of his life :-). I think that if Leif comes through this, the credit will mostly go to the doctors but in reality a great part of it will have been you saying the right things to the right people. Steph and I have seen that dynamic in action more than once recently.
From what I understand at least you're now in a place where the competence of the hospital staff is generally on par with your own. I hope that helps reduce your own stress levels somewhat.
Love,
Doug
Aw, thanks Doug!
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