Kimberly and Alexandria
Original Text of an E-mail from Douglas to Family/Friends
Both Jessica and Dawn from Hospice came by on Monday. We talked a bit about our interest in having an echocardiogram performed. They weren’t sure if this could be done while still in Hospice and removing Alexandria temporarily from Hospice in order for insurance to cover it. She had spoken with Alexandria’s pediatrician and said he would be calling us to discuss if/why/when we’d be able to do the echocardiogram. Even with the test they (hospice) have seen in most situations like Alexandria’s the cardiac surgeons would not perform surgery because of the inevitable outcome of her condition and risk involved. Aside from that, Kim and I do not, do NOT, want her to die on an operating table. Our birth plan wishes still apply… we want her to die comforted, in our arms, knowing she isn’t alone, not hooked up to machines.
Jessica noticed that Alexandria’s respiratory rate was higher than normal during their visit, something we’ve also noticed from time to time. This is another sign of her body compensating, and it’s something she said that Alexandria won’t be able to do forever. I’ve seen her have this during the last few nights as well… it comes and goes. She’s been very very fussy tonight.
My FMLA leave was officially approved this week. I continue to work hours here and there, mostly to save the FMLA time for when we’ll really need it. I only get 60 days and we want to be sure I have enough for when things begin to go downhill and I can be here all of the time. If that’s next week I wouldn’t have any worry, but if it’s 6 months from now I must prepare today for it… which means saving those days (by working a bit now). My employer, both HR and my supervisor, continue to be extremely understanding and supportive.
Thank you for all the e-mails and responses from my last note, it really helps.
