Weeping......

I raise girls.  Crying, tantrums and emotional storms are a part of the landscape.  Girls in their teens are by nature living on the brink of constant hysteria, be it of the happy kind (OhMerGerrrddd he LOOKED at me!!) to the angry kind (OhMerGerrddd SHE looked at HIM!) to the my-life-is-over kind (fill in the blank here with any and all imaginable apparently irreversible crises).  The feelings are real, and the intensity frightening, however laughable the circumstances appear to the long-suffering adult helping them deal with the crisis du jour.  But in my experience, girls thirteen and up tend to keep their true sadness to themselves.  They share some of it with peers, and display symptoms of it to their parents, but the real crying occurs in the lonely privacy of their rooms, in the dark of night, alone.  I know this.  I was a girl once.

So when a girl cries in front of me, I take it seriously.  Be it tears of rage and frustration or pure grief, my girls have gifted me with the privelege of holding on - holding them up, holding them back, holding their hearts.  From skinned knees to baby blues, tears matter, and my job is to be there when they let me.

Babygirl came downstairs this morning, wearing (the G-d freaking I HATE them) sunglasses.  I was focused on household budget, paying bills, writing checks, a letter to one of our Compassion kids, the usual.  But there was something about the set of her shoulders that caught my attention.  Slumped.  Sad.  Hopeless.  Even without being able to see her eyes, I knew she had descended to some place that needed rescue.

Paperwork be damned.  I pulled her to a couch and just held her.  We cried together for amost fifteen minutes, letting out fear, rage, and sheer discouragement.  She said absolutely nothing.  And then she went back to bed.

Lord, please.  Please.

DeeDee

Never the Same One.....

We work hard not to repeat mistakes.  It gives us so many opportunities to make new ones.

Babygirl's Cellcept is now  in a liquid.  Two months ago I had to run to a pharmacy 70 miles away to get this new prescription, and it must be discarded 60 days after it is reconstituted from powder to liquid.  So I planned WAY ahead this time.  Several weeks ago I asked for an actual written prescription for it, so it wouldn't get faxed to a pharmacy, ordered and reconstituted before we need it - one bottle costs about two grand and could last 70 days if we didn't have to toss the rest.  I took the prescription to the pharmacy so they could order it and got them to swear they wouldn't add the water until the day we picked it up.  I put the date on my calendar to call and ask them to ready the script.

And I forgot to call.

No worries, really.  Sixty versus sixty-one?  What are the odds that something terrible will happen anyway?  I called a day late and told Hubby to make sure to pick it the next day, which happened to be Friday.

Hubby took this very seriously.  He was the first one in the pharmacy when it opened, picked up the Cellcept and brought it home.  But when I sat down that evening to put it into the syringes, I discovered when I shook it that I had a bottle of dry powder. 

I must admit I got a bit loud.  But Babygirl will confirm that I didn't actually use any bad words.

Our pharmacy closes at six on Fridays.   It was nearly seven when I made this discovery.  And our pharmacy doesn't open until Monday morning at nine.  I didn't have any sterile water to add myself, and I had nothing I could accurately measure 175 cc's of water in anyway. I needed six more doses of medication.  Thank God that a bottle COULD last 70 days! 

Not that I was utterly without options.  I still have the pills, but they are 250 mg. and she is supposed to take 160.

Hubby went back to the pharmacy this morning.  I failed to ask him what they had to say about their failure to add water, or what he said to them.  I'm not sure I want to know.

DeeDee

Giving Thanks.....

The weekend before Thanksgiving has its own concerns, unique to itself.  How many people are coming?  Do we have enough chairs?  Who is bringing what, and when are we going to sit down and eat?

I think we have only fourteen this year, but I am notoriously unable to count.  No matter that we count twice, and then a third time, and then set the table with one extra place setting, we are always one short.  I have no idea at all why, or how that's even possible, but it happens every single year.

Our guests range in age from under one to over 90. There is always homemade music, homemade cranberry sauce, and homemade pie.  There are usually two turkeys (one smoked and one roasted) and one ham (Curlygirl HATES turkey).  Dinner begins with a round of thankfulness, each of us telling what we are most thankful for.

One memorable Thanksgiving my Aunt Mary (rest her soul) silenced the room by declaring that there wasn't one single thing she was thankful for!  In rebuttal, we now have a sign hanging in the dining room that says, "There is always, always, ALWAYS something to be thankful for!"

When I began contemplating what I am thankful for I had an 'Aunt Mary' moment.  After all, Babygirl is suffering daily and we don't know why.  And I have nothing to offer her to make it better - nothing at all!  My level of frustration with this is intensely high. 

But this intense level of frustration should in no way make me so ungrateful. 

So here is the start of list of things I am grateful for:

Babygirl has a kidney that works, and isn't on dialysis anymore.
Financially we are much more stable than we were at this time last year.
My family is wonderful, supportive and generous.
(My family includes a large number of people I'm not even related to!)
I have a home, food, clothes, and a job.
I live in a great neighborhood, with great neighbors.
I love turkey, and I'm going to get to eat it for a week.

Eleven more days until the neurology workup.  I'm grateful that it's scheduled.

DeeDee

Week Eighty-two - Thirteen More......

The holidays are coming.  Ordinarily, I'm a holdiay kind of gal.  I look forward to decorating, feeding people, opening my home.  I love the music, the optimism, the sparkle.  I love the intense competition that is Black Friday. 

But I'm tired.  Babygirl's pain and sadness have colored my world to a fatiguing shade of grey.  I keep putting one foot in front of the other, and I encourage her to do likewise.  I cradle her in my arms and let her cry.  I keep her medications up-to-date and make sure she understands what she can do to help keep the headaches at bay.  I've bought alternatives to the food she loves but cannot have right now.

Last night we watched the new episode of Glee.  It's her favorite show, and the only one I allow her to stay up late to watch.  There were sad scenes, and there were funny scenes.  In one moment we were both laughing out loud, and in the next she was clutching her head and saying that laughing made her head hurt more.

That was about the most depressing thing I've ever heard.

Thirteen. More. Days.

DeeDee

The New Countdown.....

I got a call from neurology today confirming the 30th as the date for the testing.  It was reassuring to hear that the neurologist himself had called his scheduler to make sure things were all set, and that he asked her to check with me to see that things were not deteriorating further.  I'm to call immediately if that happens, and I have to say it's nice to hear someone say that they are concerned and paying attention. 

Fortunately we do not have to go down for a separate anaesthesia evaluation.  She was assessed by the sedation team in August for the biopsy that never happened, so she's up-to-date with them.  I'm considering calling nephrology to reschedule our visit for 10 days early to match up with this.

All that's left for me to do is to start a new countdown: 15 more days. 

Is there anybody besides me out there who is utterly astonished by the fact that Thanksgiving is a week from tomorrow?  I have't bought the turkey that I should start thawing today.  I don't know who's coming, haven't sent out the engraved invitations, and haven't gotten any up-front offers to help with the meal. 

Ah, well.  "Ye have  not because ye ask not."  Time to get out the engraver.

DeeDee

Neurology for $400, Alex.......

We met our neurologist today.  I like him.  He listened without interrupting, spoke directly to Babygirl when appropriate, and didn't rush to make a final diagnosis without some extra information.

We continue to carry the diagnosis "Headache NOS" ('not otherwise specified' for those of you unfamiliar with medical code terminology).  He ordered an MRI of her brain, an MRI of her cervical spine, and (not unexpected but YIKES anyway) a spinal tap.  He did not feel that it was emergent, so we came home.  No admission today, yippee!  I guess packing the extra undies worked.

All of these things, in the absence of an emergency, require prior authorization from our insurance.  Who knows how long that will take, but it was less than a week for them to authorize her kidney transplant (and months to get it as we all know!).  Once authorized, they plan to schedule them all for one day.

Each MRI takes a full hour and requires that she lay perfectly still the entire time.  And the spinal tap?  On an adult it's a procedure under local anaesthesia.  For a kid, sedation is advisable.  Frankly I think she'd be able to handle the tap more easily than the MRIs. 

Before I even arrived home I had a phone call from the sedation team nurse.  She had the office notes from today's visits, and also the sedation records from Babygirl's kidney biopsy last May ("This is odd - they say she's VERY ticklish."  Um...yeah.).  It was her opinion that Babygirl's weight gain and increasing body mass index put her at risk for unsupervised sedation in an MRI machine.  She feels her airway could relax enough to allow her to stop breathing, so she is recommending full general anaesthesia so she can be ventilated to protect her airway while she's out.  So now the co-ordination is between general anaesthesia, MRI and the spinal tap area (?). 

This could take a minute.

Meanwhile, they have given us the Migraine Diet to follow.  No chocolate (including hot chocolate or chocolate milk), peanut butter, pizza, cured meat (ham) or Chinese.  There's more, but those are the ones that hurt.  I won't be able to serve quiche or anything made with aged cheese.  Pork is limited, no sausages, hot dogs, cold cuts.  Some of these things overlap with the post-transplant diet, but many are things she couldn't have while on dialysis that she's been very happy to have back.

This kid just can't seem to cut a break, but at least they are finally working on it.

DeeDee

Expectations....

We've waited an eternity to see the headache specialist.  We've arrived safe in Philadelphia, and will travel to the hospital in the morning to meet, as usual, with the transplant team.  And we'll finally meet the neurologist.  He probably already thinks I'm crazy - we've bugged the living daylights out of him already.

We've pinned a lot of hope on this visit.But walking in and expecting that she will be headache-free instantaneously is clearly unrealistic, however much it would meet my fondest dreams.

But aside from knowing not to expect immediate freedom from headaches, I really have no idea WHAT to expect.  MRI?  Better neck images?  Extra blood work?  Admission?

I brought extra undies just in case.  I figure if I'm ready to stay a few days they'll be more likely to send us home.  It's a karma thing.

DeeDee