Wednesday, June 26, 2019

Moving On Up......

As Babygirl gets older, we are needing to move from kid doctors to adult doctors. First to go is Ob/Gyn (yes, as horrifying as it is to contemplate, pediatric Ob/Gyn is a Thing), so we just spent half an hour filling out 10 pages of paperwork for the new doctor that we're pretty sure she won't entirely read.  After all, it asks about exercise TWICE.

But they wanted to know if she's ever had HPV vaccines.  She has, of course.  Interestingly, it was a requirement for transplantation. Since the medications that prevent rejection increase cancer risk, it is logical to do everything possible to prevent cancer in the first place.  As I wasn't entirely certain whether this doctor tied directly into our hospital computer system, I pulled out this little baby:




It's the massive zip-up three-ring binder that CHOP gave us on our first visit to their transplant team.  It came complete with a shoulder strap, and I can actually throw my computer in there.  It has her surgical records, dialysis records, lab reports, and vaccine records (to a point - I think her most recent meningitis vaccines might not be in there, now that I look at it).  There are actually copies of her Guatemalan medical records as well. It's stored under my bed, and it still contains the waterproof emergency dialysis orders that we were to grab-and-go with in case of disaster.

You can see a pocket for the accumulated cards of those who have cared for her over time. Social workers, surgeons, dietitians, nephrologists, cardiologists, "Oh, yeah, THAT was that guy's first name!"

A number of these folks we learned to dislike because of what we saw as poor patient care, making us choose to go an extra 130 miles for better care.  Some that we loved and trusted with our whole hearts have retired.  In any case, Babygirl may be MY baby, but she's not a little girl any more.  It's time to move up.

We meet with the family doc on Friday to get some referrals to the Grown-Up Doctors.

DeeDee

P.S, Entirely inexplicably, there is a card in that file from a probation officer from the county in which we live.  Precisely NONE of our doctors are located in this county, none of MY  kids have been on probation, and really, just.....why?

Sunday, June 2, 2019

Critters.....



One of the grandkids recently had headlice.  This would be less of a problem if said child's parents' work schedules hadn't been set up in such a way that they needed someone to take him to school every morning. And, rather than awaken him and a babysitter at O'Dark:30, he's been spending the night in our guest room so Babygirl could  get him up and walk him to school.

Now, this is not a crisis of the epic proportions that it was when his Mama and her 5 long-haired sisters spent ONE ENTIRE SUMMER struggling with an infestation of lice. (I have a touch of PTSD thinking about that:  A vivid flashback to a tub full of little girls with smelly cream rinse in their long hair whining about those dreadful combs - UGH.)  It's just a one-room intensive cleanup with the usual transplant-level clean of the rest of the house, but....

Babygirl CANNOT get headlice.  This is just one more ridiculously simple infection that NO ONE considers important that people with suppressed immune systems cannot tolerate.  These little critters bite the scalp, opening up the skin to all kinds of infections like cellulitis and lymphadenitis.

That is correct:  Babygirl could end up hospitalized because of a simple case of head lice.  This is what anti-rejection medications do to your immune system.

One more time:  Transplantation is a treatment for kidney failure, not a cure.  It has its own long-term, never-ending risks as well as benefits compared to dialysis.  We need a cure.

DeeDee