Saturday, January 28, 2017

Going home

We are moving towards going home today.  Nothing has changed but they've done all the tests they can think of and all is negative.  Abby had a CT scan of her sinuses and gut, an eye exam, an ultrasound of her elbow joints that are not working very well, and an ECHO of her heart all yesterday afternoon to see if there are any pockets of infection hiding in those areas.  As of this morning, everything looks fine in those areas.  She is still getting the 104 fevers, throwing up, in a ton of pain when she moves, and coughing a lot.  But, they feel safe sending her home knowing that she will be more comfortable and sleep better there.  She has to be able to take and keep down all her medications and drink enough fluids to stay home so we are going to give it a try.  We are obviously so happy to go home, but also know there is a lot of care and work needed to keep her there.  We'll keep you posted.  Nothing to report of the serum syndrome vs. virus/infection front.  Still waiting on some blood tests that might shed light on the serum syndrome side and help them decide whether a dose of oral steroids would be a good idea.

Friday, January 27, 2017

Friday's Update

Abby is still at Children's.  Her fever is hovering around 100 and getting as high as 102.  It has been hovering at 100 but going as high as 104 so that's some improvement.  They took out her IV since she doesn't need any more fluids right now and her IV arm was starting to puff up.  They did an ultrasound of that arm/shoulder last night to see what was going on and we find out about that today when the doctors round.  They are thinking most of this is either an unidentifiable virus or something called serum syndrome.  Serum syndrome, as I understood their explanation, is something people can get in response to certain medications. It is like an allergic/autoimmune response.  So the high fevers are her body trying to mount a defense against what it perceives as a threat, the painful lymph nodes are the body trying to fight an infection (real or not) and the sore joints and muscles are an inflammatory response like when you sprain your ankle and your body swells that area to protect and heal.  She has been puffing up like a balloon and having a lot of trouble moving.  So, either diagnosis means waiting it out.  If it's the serum syndrome, they can do a short coarse of steroids to help with the inflammation.  Steroids lower your immunity, however, so if it's an aggressive virus then it would have a chance to thrive a bit more.  Today when the doctors round we should know more.  We should have a visit from the rheumatoid doctor to further explore the serum syndrome possibility.  Abby's starting to perk up a bit.  She got to pull her IV out, very satisfying!  We heard two owls calling to each other in our backyard last night so Mark recorded them and sent them to her.  My mom is here and down there with her now.  She sat up in her chair last night a bit which we will try to do more now so her lungs get some exercise (that is why they think we had that ICU scare Tuesday night-just her lower lungs starting to shut down a bit from all the body stress but mostly just lying in bed for so long).  I think that is the basics.  Thanks for all the prayers and support.  Abby may be able to come home by the end of the weekend.

Wednesday, January 25, 2017

Admitted to the hospital

just FYI Abby was admitted to the hospital yesterday. They are trying to find the cause of this fever and painful throws and joints. She doesn't have a port to access any longer so they have to use an IV and she is having a hard time with all of the needle sticks.

Fever is still high and now she's in IV antibiotics to see if that will help.

That's it for now.