Palliative care is the newest specialty that Keira sees. It's been a good experience. We go to the clinic every couple of months and sit down with a doctor and a social worker. They ask us a lot of questions about what our life is like and what challenges we have. As far as I can surmise, palliative care is about making life as simple as possible for patients and the families of patients who have severe problems that aren't expected to get better. So far, there hasn't been much that they could do for us that I haven't already done, but the support has been nice. It's a little like having a case worker who has more pull because he is an MD.
Talking to others about palliative care has been strange. Most people, including other specialists (!) have never heard of it. I guess it's a relatively new specialty around here, particularly as far as kids are concerned.
I've been meeting fairly regularly with the moms of the other kids in Keira's Friday group. Their kids are more or less as functional as K and see many of the same doctors. I was a little surprised that none of them had been referred to palliative. All I can conclude from that is that her doctor perceives Keira to be more fragile than her friends. As disheartening as that is, it hasn't bothered me too much. The truth is the Keira is more stable now than she has ever been, so I think palliative was established as a "just in case."
All that said, I am so incredibly happy about palliative because of the one real thing they've done for us so far: they gave me this book.
Ok, so the title is a little daunting, but this book was a breathe of fresh air and I practically read it from cover to cover.
Never before, in all of my research, had I come across a book that seems to be written for me. It's like the equivalent of What to Expect when You're Expecting for parents of typical kids.
It starts of with a carefully and sensitively worded introduction and moves on to a list of common specialists a kid with severe neurological impairment (SNI) might see. Each of Keira's specialists are listed there as if it were written about her.
Then, the chapters hit on the highlights of our struggles and concerns: sleep problems, seizures, nutrition and weight gain, retching and vomiting, pain...
The chapters address how to make decisions and prioritize needs. It discusses the most up-to-date treatment options and medications.
Needless to say, I was thrilled. I honestly felt like this book could be life changing for Keira and for us. Published since Keira's birth, I was unsure that her doctors had seen it. It's published by a very credible source and written by a doctor who specializes in these kids. So, I've shared bits and pieces of the book with various practitioners and they have been very receptive. I was most excited about the parts having to do with feeding. The book suggested a height to weight ratio goal that was much smaller than what we had been striving for by following the CP growth chart. The GI doc gave us his blessing to actually cut back on Keira's feeds and the results have been marvelous. She's only being fed an amount that she can easily handle and thus is retching and vomiting significantly less. Furthermore, we've been able to discontinue her nightly drip feed, and so she sleeps much better. And guess what? She had GAINED ounces at her last weigh in! It is so wonderful to have the ok to finally relax a little on the one issue that's been troubling us since day one. Woohoo!
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