Understandably, she was agitated late last night during the whole IV checking, re-taping, and eventual re-poking. But she woke up this morning pretty ornery too. Sweet girl...she is just so out of sorts and not herself. We are continuing to pray everyday that this is the solution to helping Audra get back to her usual self.
Her neurologist is working closely with many of Audra's other specialists to be certain we are covering all the bases in regards to her medications and treatment plan.
ENT came by to check out her left ear. The first week of May she developed a bad ear infection with a ruptured ear drum and started her first round of antibiotics. Once she completed that course the ear drainage and discomfort returned so she started a second round of stronger antibiotics and ear drops. Last Friday I had her to the pediatrician for a follow up and her ear was still infected. So she started a third round of antibiotics. What's troubling is that it's the same ear that she had a surgical tympanoplasty done on a couple years ago. So she blew through that repair with this infection. Her ENT doctor gave her an urgent appointment to be evaluated this past week, but she missed that because of this admission. So ENT saw her here and finally {thank goodness} that stubborn ear is heading in the right direction!
The psychiatrist from the medical/behavioral unit came by to talk about different behavior meds that are particularly helpful with autoimmune encephalitis. Even though she is receiving the treatment for it, the behaviors associated with encephalitis can linger for a while so we need a good medication plan. And even though our previous attempts with a few different meds haven't been helpful there is hope that one of these specific meds might make a difference.
We are hoping to get Audra transitioned off the clonidine patch and back on clonidine pills. Prior to all these hospitalizations she only took clonidine at night to help her sleep through the night. During her first hospital stay they started adding daytime doses due to her behaviors and then she developed hypertension so they changed her to a patch for more consistent/steady dosing. But the patch makes me so nervous...I'm constantly watching it like a hawk to make sure it doesn't get loose and fall off {which it does...every week!}, and then make sure she doesn't chew on it or eat it, or give it to the puppy, because that would be very harmful to either of them! So we have a plan with her nephrologist to take the patch off and put her back on pills then adjust the dose to make sure she isn't too sleepy or too hypertensive. Quite the balancing act!
Her neurologist has been talking with the immunology team to try to figure out the best treatment plan for Audra. The issue is that treatment for autoimmune encephalitis includes some drugs that suppress the immune system. And since Audra has an immunodeficiency they want to make sure anything they use to treat the encephalitis is safe for her and her already compromised immune system. Another unique balancing act. So the IVIG will be given daily until Monday and by then they will hopefully have a plan regarding high dose steroids and Rituximab.
Otherwise we are just hanging out, watching TV, taking walks and...
hoping and praying that this IVIG kicks whatever is causing all of this to the curb
and we get to see a glimmer of the old Audra soon!
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