12/13

Well, it's been a while and things have changed.  John is getting exponentially stronger every day but he is coming from a long way behind so he is still not ready to be discharged yet.  The most pressing problem at the moment is a CMV infection which can only be treated with IV medications in the hospital.  His doctor told us this morning he is already responding well to the meds and the protocol for treating this virus is well established; but, years ago transplant patients with CMV almost all died.  So, John will be staying there until that infection is cleared up. 

Desquamation (shedding of skin) continues.  I wish he could hook part of his skin on a peg and crawl out of it like a snake so he could get it over with.  There's still a lot to go; it's amazing how much skin we have.  He's itchy all over while this is going on; we're going through a tube of aquaphor a day trying to moisten him up.  And, I was wrong about the top of his head not being involved.  That's shedding too.

Tuesday night John had a lot of chest pain.  Many, many tests later it was determined he did not have any heart involvement.  The doctors said heartburn can present with the same symptoms.  He has begun eating again so maybe he just did a little too much a little too soon.  Jefferson's food and selection are good so there is plenty for him to choose from.  In addition, he sent me out for McDonald's fries and a cheeseburger which is ok as long as we ask to have it cooked fresh so it hasn't been sitting around.  Still hasn't gained any weight.

Still having problems holding on to his sodium.  The hospitalist says there are lots of reasons why that is so; until it is resolved, he is supposed to drink gatorade with his water.to get some extra sodium.  (Side note, John's dr told us Gatorade was developed for a Florida university football team to replace electrolytes lost in practice.  Guess that's why it's "gator"ade.)  Interestingly, there wasn't too much potassium when I checked the label.

The high doses of steroids are wreaking havoc with John's blood sugar.  He is now tested 5 times a day and gets insulin when it is too high.  The steroid dose was decreased on Tuesday but he is still having some high blood sugar readings.  John's doctors say the steroids also make his muscles weaker so it is important to walk and get out bed and do his exercises as much as possible to try to retain as much strength as he can.  And the steroids can cause blood pressure readings that are high and/or low.  Which all begs the question, who would take this stuff unless there was a very good medical reason?

Ankles are still puffy but improving.  He is supposed to keep his feet higher than his heart which is an interesting posture... His skin is breaking down from being in bed so much.  He got some special lotion and an air mattress.  Seems to be working,  His nurses are plying him with senna, miralax. some other lax; hopefully there will be success on that front soon too.  All of his blood counts are down but he is still not neutropenic - wbc 3.0; hemoglobin 9; platelets 49,000. 

John is definitely sounding stronger and feeling better each day.  Thank you for keeping us in your thoughts and prayers.