Subtle Changes.....

I commented yesterday about Babygirl cleaning the kitchen. The amount of work she accomplished in a short time made me think...

Last year at this time she would not have been capable of doing such a task. She was too tired, too sleep-deprived, too anemic, and too immature.  It was easy to see a big energy jump immediately after the transplant - an almost overnight change to a more energetic, happier, rested child. 

But aside from the distinct hyperactivity caused at times by the high dose steroids, she settled over the late spring and summer into a sort of lassitude.  She watched a lot of TV, and avoided strenuous activity.  When I'd go for a walk, she'd stay home, quiet.  While she was certainly dramatically better than she was pre-transplant, she still wasn't quite herself.

There has been a gradual, but radical change over the last few weeks.  Her energy levels have risen, her wit has sharpened, her laughter and sense of purpose have become more intense.  It snuck up on us, this return to the Babygirl we remember from a few years ago.  She wants to walk the dog.  She wants to get out of the house.  She wants to get back on the swim team.

It occurred  to me that perhaps blaming her hyperactivity on the steroids was an error.  If I think back, those periods of energy all correlate with creatinine levels of 0.9 or less.  The fact that she hit those levels because she was on steroids the first couple of times may have been coincidental. 

We are liking Rapamune.  It's been nearly a month of nearly normal renal function, and she is a new kid.  The possibility that the tacrolimus may have been causing some depression has crossed my mind, but logic suggests that the simplest answer is that she simply feels better when the kidney is working at its best.

DeeDee

Yesterday's Results......

Yesterday's visit with the doctor was same old/same old.  Blood work. Breakfast.  Weight (stable) height (unchanging) vital signs (acceptable).  Dr. A came in and went over what we have available at the time of the visit:

Bone age (determined from an x-ray of her hand from last week, a couple of days after she turned 13) is 15, two years ahead of what it should be.  Since we really do know her actual birthday, and there isn't much doubt that she was 23 months old or LESS when we got her (based not only on her stated birthday but on her size and developmental characteristics), it's interesting to see an x-ray imply that she is aging faster than expected.  We discussed it, but the conclusion is that whether or not it is something to worry about, the bottom line is that it can't be changed.  Babygirl is, therefore, more or less done growing.  That means that she, the only one of my kids who might have actually exceeded my 5' 9", is going to finish up being 5' 2", or 3" if she's lucky.  Kidney disease stinks.

Cholesterol is high, but they still haven't gotten the lipid results from April of 2011 that our doc did the day her original diagnosis was made.  I know it was done, but I'm sure I never even thought about asking for those results.  The kidney failure was the only thing we focused on.

Creatinine is 0.8 for the third time in a row.  The kidney likes Rapamune.  And so do we.  A couple of mouth ulcers?  No biggie.

Neutrophil count is down to about 750.  Ulp. It may be from the mycophenylate, but if they cut the dose more she'll probably reject again.  Okay for school.  Watch for fever.  Avoid sick people (um, okay, sweetie - run like hell if somebody at school sneezes or barfs on you!). Repeat locally next week and the 'team' will discuss whether or not Neupogen is a good idea.

See you in two weeks.  Or sooner, depending.

She feels great, so it's a good day?

DeeDee

Week Seventy-one - Summer Vacation......

I worked Monday,and took the rest of the week off. By "off" I mean that Tuesday I spent all morning doing paperwork to expedite Babygirl's ongoing battle for proof of citizenship. I also spent a great deal of that morning arranging paperwork for submission/resubmission of medical expenses, seeking  better coverage from our insurance or reimbursement from our flex spending account. Tuesday afternoon I went to our congressman's office, as noted in my last blog.

Wednesday?  Hmmm..... Pack for our trip to Philly:  A bag for me for the three days we are staying.  A bag with enough towels for five adults and two babies.  Snacks.  Shopping with Curlygirl for lunch items: Rolls, lunch meat, water bottles, mustard, mayo.  Pick everybody up.  Bank.  Car repair.  Fill the Goose (thanks for the gas discount, Nancy - dropped the price $1.90/gallon!).  We were on the road by 2 PM and in our home-away-from-home by 5:30.  Squeaker travels well.  Boo, not so much.

Today we left for the hospital at 6:45.  This will usually get us through rush hour ahead of the majority of the traffic with a typical arrival at 7:30.  Today it was nearly 8:30.  Lord alone only knows what happened on the road ahead of us to back us up so far, but, ugh.

The appointment itself was uneventful.  I realized I had been forgetting to give her the bicarbonate, but with the improvement in her kidney function it proved to be a non-issue, and it was officially discontinued.  Her creatinine is 0.8 (still!!!), her cholesterol isn't bad (although her triglycerides are a bit high.....less 'white food' and more whole grain), and everything overall looked pretty darned good.  Her weight is slowly dropping, also a good thing.  Come back in ten days.  It is AWESOME to get two consecutive good reports!

Everybody wanted the opportunity to visit the King of Prussia Mall, since Babygirl had been telling them about it, so I drove them out, came back to spend a bit of time with my sister-in-law before she headed for work.  I  was hoping to snag a nap, but the call came for the mall pick up, so off I went!  I'm making the kids make dinner and do clean-up, and I'm going to BED.

Tomorrow is our annual family trip to Dorney Park, and for a change my niece and nephew are able to go with us.  I learned, quite by accident, that the Friday before Labor Day seems to leave amusement parks fairly uninhabited, so we always go on that day.  I don't even need to ask for the day off anymore LOL.

So, tomorrow IS my summer vacation.  I'm going to sit in the water park and stay cool with the grandbabies, after I rent a double stroller for them so the kids can go be lunatics on the rides.

Today is a GREAT day!

DeeDee

Rapamune.....

The new drug is Rapamune.  Babygirl's been on it for just under a week.  One week ago today her creatinine was 1.4.  Today it is 0.8, the lowest it's been since a couple of days after the transplant.  I'm thinking that Jorge's kidney was not liking the tacrolimus (which, as we have known all along, can cause kidney damage). 

That is GREAT news.  Less great, her neutrophil count is continuing to drop.  Still 'safe', but dropping.  Ah, well, that problem can be fixed, right?

Still waiting to hear about some other things like her cholesterol.  So far she hasn't noticed any problems, and she feels well, so...

It's a good day.  Okay, it's a GREAT day.

DeeDee

Maybe This Time....

Home from Philly!  This week's trip sponsored by my good friends and neighbors, Joe and Judy, who lent us their Nissan Rogue.  Nice little SUV, with a very nice ride, gas mileage about the same as Rhonda the Honda but better climate control!  But I must say that I thank God that Joe caught me as we were about to pull out and told me where the mirror adjustment knob was.  I would NEVER in a million years have found it without help!

The numbers are stable.  The kidney is happy (or at least not more UNhappy), tacrolimus levels stable, and she has plenty of neutrophils (just in time for the school year to end).  We have permission to have labs done locally next Monday, across the street!  And our next appointment is in two weeks.

Maybe THIS time they actually mean two weeks!

DeeDee

Week Fifty-seven - The Changing of the Password....

It's been over three months since I returned to work following Babygirl's transplant.  I know that it's so because I had to change my office passwords today.  I put new passwords in immediately following my return to work because they had expired while we were in Philadelphia, and we are automatically prompted to change them every twelve weeks or so. 

So, good-bye, KdnyDnr1.  Farewell to my daily reminder to pray for Jorge's family.  And good-bye as well to the unrealistic hope that having a new kidney would make life 'easier' for us.  We still have a chronically ill little girl, and for us the vigilance really hasn't changed a lot. 

But thanks be to God, it has changed for HER.  She feels SO much better that it's a jolt, a shock, a blessed reminder of who and what she once was.  Even today, unable to go to school, she's feeling so much like herself that she's rather angry that she can't go!

And I don't need more of a daily reminder to pray than that.

DeeDee

Week Forty-eight - Recovering on Schedule.....

I am perpetually amazed by how well Babygirl does overall.  She knows her meds.  She takes them without protest.  She follows her diet.  She is as active as her quarantine allows.  She recovers!

Yesterday she returned to school.  I expected that she'd be very tired.  I drove her in, but she walked home (a bit less than a mile).  She had to re-enter classes, figure out what new special class that she's supposed to be in (it was music when she left, who knows now).  She had to deal with crowds after weeks of family.

I had a hard time getting her to go to bed.  She has WAY too much energy for a sick kid LOL.

DeeDee