9/29: Dr. Kroin Makes a Housecall
A few days ago, Dr. Kroin, our pediatrician, offered to stop by our house to check-up on Leo. We weren't sure if we'd heard that right, but she repeated that she'd be willing to stop by on her day off, to see how he was doing. Of course we accepted and she came by Thursday evening. We wanted her mainly to check on Leo's skin. His back and shoulders seem to have a heat rash; his entire diaper area is not looking so good; and generally his skin seems to be suffering the most. This is all fairly new, but clearly makes him more uncomfortable. She came at about 7:15pm and closely checked out everything. She told us it seemed to be a combination of things.
First, just as we thought, there were signs of skin issues related to decadron, which causes thinning of the skin, so it looks more red and spotty because all the stuff underneath (e.g. blood vessels) becomes more visible. Second, also as we thought, Leo does have a heat rash, mostly because he's immobile right now and not enough air gets to his back, which stays wetter than it should. Third, he seems to have a fungus on his skin, which is probably caused by decadron weaking his defenses and allowing crap like this to have its way inside and out.
The plan? We're already lowering the decadron, but I'm guessing it's going to take quite a while for Leo's skin to return to normal. We've already been changing his shirts much more often; giving him sponge baths, which he now hates, more often; and putting calamine lotion on his back and shoulders to stop the itching. This weekend we'll order a low air loss mattress and probably an adjustable bed so that he can sit-up without having to switch furniture. A low air loss mattress is basically an air mattress that pushes air through and get to the skin, so there is "low air lost" by the skin...at least that's my understanding. The air cools and dries the skin, which should help alleviate and prevent heat rashes, these fungal things, and make Leo much more comfortable. Finally, Dr. Kroin brought a bunch of different samples of creams and things that combine anti-fungal medicines with the two most common skin/rash substances, zinc oxide and petroleum jelly.
She left after about an hour and a half at about 8:45pm. She has been -- and continues to be -- incredibly helpful, supportive, and caring. I passed-out within seconds of her departure and Marina pulled the night shift, waking me up at 4am. Leo drank a little and I noticed that the pump was showing 13 minutes left until bag 2 (AS2-1) starts, which is the antineoplaston that has a sedative side-effect, which usually works. So I finally have some time to catch-up on these posts...with plenty of coffe by my side.
Today will be another anxiety-filled day because I should be getting a final reading of Leo's MRI. I don't expect much of a reduction since Leo was off treatment for so long. Right now, the goal is to do everything to prevent future interferences. I'll post the results when I get them.
First, just as we thought, there were signs of skin issues related to decadron, which causes thinning of the skin, so it looks more red and spotty because all the stuff underneath (e.g. blood vessels) becomes more visible. Second, also as we thought, Leo does have a heat rash, mostly because he's immobile right now and not enough air gets to his back, which stays wetter than it should. Third, he seems to have a fungus on his skin, which is probably caused by decadron weaking his defenses and allowing crap like this to have its way inside and out.
The plan? We're already lowering the decadron, but I'm guessing it's going to take quite a while for Leo's skin to return to normal. We've already been changing his shirts much more often; giving him sponge baths, which he now hates, more often; and putting calamine lotion on his back and shoulders to stop the itching. This weekend we'll order a low air loss mattress and probably an adjustable bed so that he can sit-up without having to switch furniture. A low air loss mattress is basically an air mattress that pushes air through and get to the skin, so there is "low air lost" by the skin...at least that's my understanding. The air cools and dries the skin, which should help alleviate and prevent heat rashes, these fungal things, and make Leo much more comfortable. Finally, Dr. Kroin brought a bunch of different samples of creams and things that combine anti-fungal medicines with the two most common skin/rash substances, zinc oxide and petroleum jelly.
She left after about an hour and a half at about 8:45pm. She has been -- and continues to be -- incredibly helpful, supportive, and caring. I passed-out within seconds of her departure and Marina pulled the night shift, waking me up at 4am. Leo drank a little and I noticed that the pump was showing 13 minutes left until bag 2 (AS2-1) starts, which is the antineoplaston that has a sedative side-effect, which usually works. So I finally have some time to catch-up on these posts...with plenty of coffe by my side.
Today will be another anxiety-filled day because I should be getting a final reading of Leo's MRI. I don't expect much of a reduction since Leo was off treatment for so long. Right now, the goal is to do everything to prevent future interferences. I'll post the results when I get them.
posted by Yury at 3:55 AM
1 Comments:
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