Week Thirty-Seven - Keep the Damned Phone ON!!.......

Somehow I walked out the door today without my cell phone. I didn't miss it until after lunch, and I'm not sure why I noticed then.  It actually usually lives in my bra, and I'm so used to it being there that it's mentally "invisible," like a wedding ring or your glasses. 

Even when I noticed I didn't worry about it much.  The transplant team has a list of numbers, and both times when they have called I didn't have my phone on me (once I had just gotten out of the shower and once it was on the charger upstairs), and both times they called Hubby's phone. They also have our home number, my work number, and family numbers as well.

But when I looked at our answering machine today when I came home there was a call from BOTH transplant teams!  I nearly stopped breathing.  The one from the local team turned out to be a question about  Babygirl's current insurance.  Phew.  But the one from the tertiary center was, "Please call us back within an hour."  Ouch.  Too late to meet that deadline.  Hubby was ready to cry, and I was not too happy myself.  No one had called HIS cell - and he had it on him all day.  So I went hunting for mine, and found that I had SIX voice mails. 

Turns out three of them were irrelevant - Mom wanting to go shopping, somebody asking about tomorrow's baby shower, a call from our local doc.  But three were from the tertiary transplant team.  The first two were as cryptic as the one on the answering machine.  But the third finally revealed the point of the phone calls.

It was NOT a kidney. Babygirl had blood drawn at the dialyis center Wednesday, and I forgot to take a shipping label with me, so we brought the blood home, added the label and hiked it to our hospital for pick up.  Apparently the discrepancy between draw site and pick up site caught the lab's attention, and they wanted verification of the dialysis center's information.  Well, we missed that call, so I'm guessing they tossed the blood and we will need to go get a new one done next week.  Inconvenient, uncomfortable for Babygirl, but not as bad as missing a "We have a kidney for you" call.

I am sure that the transplant coordinator will have something to say to me on Monday.  And whatever it is, I agree.  I CANNOT believe I walked out the door without that phone.

DeeDee

Week Thirty-six......Facing A New Year.....

Last year at this time I thought I was surviving just about the worst thing that had happened to me, ever.  I was on heavy meds for a run of migraines that literally could have killed me.  I was beginning to believe I had permanent brain damage - I couldn't add small numbers, remember big words, pull sentences together (all things of some importance when one makes a living as a physician).  I was not sure I'd ever be able to work again, and was trying to imagine how we'd survive financially.  I had a pregnant teen in the house and was very worried about her.  Hubby's knee was wrecked, my oldest daughter was suffering from post-partum depression, and I'm sure I've left some things off the list of cares and concerns.  I clearly remember thinking, "I can't WAIT until this year is OVER. 2011 has GOT to be better."

Well, the cognitive issues turned out to be the result of the migraine meds, and are mostly better.  Both my daughters are doing fine, and my granddaughters are delightful. Hubby had is knee repaired and is back to work. We had a loving and happy Christmas despite our financial constraints.

But there are new challenges.  My mom's health has been declining and more of her care rests on me.  I am still not able to work full time, so money is tight.  I have another pregnant teen.  Our kids were displaced by the floods, and lost much of what they owned. Hubby's dad died on Christmas Eve.

And Babygirl still needs a kidney. And we are still unable to get her dialysis paid for by either our insurance or medicare.

I certainly can't say I am sad to say goodbye to 2011.  But I am superstitiously afraid to wish for a better year.  Look what it got me last time.

DeeDee

"This is the LONGEST......."

So Babygirl's been acutely ill since Monday.  By Tuesday she had a very sore throat and a fever of 102.6 degrees.  The family doc saw her Monday, did a rapid strep and sent her home.  Tuesday got a full throat culture and peritoneal dialysate culture, both negative.  Fever ongoing through Wednesday, with Babygirl looking increasingly ill.  Poor thing - her throat hurt so bad she didn't really want to drink, and eating made her nauseated.

No fever this morning, but tears because the throat hurts SO bad, so we just came back from the family doc.  We went to get blood work after he spoke with nephrology.  I was concerned about possible mono, but it turns out they already tested her and she's immune, but we are rechecking that.  Meanwhile, this is day number four of no school, and Christmas vacation starts tomorrow.

Overall, it's been a bit draining.  I have taken off two afternoons, which is something I really can't afford to do too much of.

But then, there is Babygirl's perspective.  "Mom, you know, this is the LONGEST I have ever been sick!" Well, I guess not counting the Swine Flu for five days last year, and the fact that you are IN NEED OF A KIDNEY TRANSPLANT!!!

Seriously.  I had to laugh, later, privately.  The kid is sick enough every day to qualify for Make-A-Wish!  And somehow, she doesn't see it that way.

I'm proud of her endurance.  And I'm kinda proud of us.  I think that if she doesn't perceive herself as "sick" all of the time, we have acheived something great for her - a semblance of normal life.

DeeDee

Week Thirty-five - What Happens If She's Sick When........

Babygirl awoke this morning with a sore throat, fever and bellyache.  Fever and bellyache scare me. After all, what if it's peritonitis?  But the dialysate is clear, and her tummy is soft.  So I decided that she should stay home from school, and call the family doc and the dialysis nurse for further advice.  Babygirl lays down on the couch and falls back asleep, and I carry on getting ready for work, Hubby all unaware of this little drama.

Then Hubby comes downstairs holding our cell phones, in the middle of a call on his, which he thrusts into my hand saying, "It's the hospital."  The OTHER hospital.

Of course it is.  And like last time, the first thing they say is, "We're calling to see how Babygirl is today."  Well, this time at least I immediately understand the purpose of the call.  Tears burn behind my eyes and I tell them, "She's sick."  I fill them in on the details and watch Hubby's face go from hopeful to bewildered to crushed.  "Well, she was just backup" the transplant nurse tells me.  But I don't need to be told that the reason they HAVE backup is because there have been times in the past when the first and second choices have fallen through.  And last time she was only two spots away from the top slot.

And I have less than twenty minutes to let this all go, get ready for work, and take care of people who come to me to fix THEIR problems.  And that's tough to do because my phone keeps ringing - the family doc ("We can fit her in at eleven"), the dialysis center ("Don't worry about peritonitis if the fluid was clear."), Hubby ("Med list?"), the family doc again ("What shots did they give her at dialysis?"), and some random call I later figure out was a reminder for me to take my mom to the heart doctor later this week.

Turns out its "just a virus." "Can't you just call them and tell them to wait?"  I am amazed at how many times today I've heard this.  No, it can't wait, it musn't wait, someone needs that kidney as soon as possible. And I know that if they suppress her immune system while she's fighting a virus it could kill her AND the new kidney. And it isn't worth the risk either way. So somebody elses' child is getting a kidney today, and Merry Christmas to them.

And many, many many many prayers for the family who, six days before Christmas, have had to decide whether or not to donate their child's organs.  And bless them many times over for choosing to do so.

And we get to celebrate Christmas at home.  We almost missed Halloween last time.  Well, if God doesn't want us to miss a holiday at home, there's lots of non-holiday time between New Year's and Easter.  We'd be happy to go anytime......

DeeDee

The Aftermath.......

Since our false alarm phone call last Saturday, hubby and I have been dealing with the letdown.  But for each of us there is a new layer of "dealing."  I'm not sure why, exactly.  And I know it's different for both of us, and neither of us can really articulate it very well.

I haven't slept since Saturday, except for Tuesday night when I took a Benedryl.  Since I don't work Wednesdays I figured I could deal with the hangover that sedatives always leave me.  And the added bonus of the Benedryl was that is took away the hives I developed for no apparent reason.  My scalp was itching so badly I had the office nurses checking me for head lice.  I lie awake mostly, dozing sometimes, and see the time pass in minutes or hours on my alarm clock.  And then I oversleep.  And hubby has disappeared from bed several times to go to the Man Cave to watch TV or play a game, only to come back to bed a couple of hours later.

I've never really been an insomniac.  Medical residency trains you to fall asleep quickly whenever the opportunity presents itself.  So why won't the hamster wheels inside my brain stop running?

I can't say I feel disappointed - that is far too simple a term. Let down, like some people feel if their spouse forgets an anniversary.  It's almost like I felt the year my husband was in the hospital and there was nothing in my stocking for Christmas - empty somehow.  Unnoticed.  Un-cared for.

So who, exactly, has let me down, failed to notice or care?  I would like to be able to say that my faith is stable enough to take what is, in the grand scheme of things, a momentary disappointment.  I am back, in a way, to yelling at God about how much I love Babygirl, how important and special she is, how much she MATTERS - as if she doesn't matter just as much to God.  And in my deepest heart, I know "All is well, and all is well, and all manner of things shall be well." 

But I want Babygirl to be well.  And I want it NOW.

DeeDee

Week Twenty-two - More Gratitude....................

Once you start counting your blessings, more of them become obvious.  So I am going to mention a few that I forgot, or at least one that has appeared since my last post.

Sunday I needed to take Babygirl to the tertiary center for two doctor visits.  One with anaesthesia, so they could see that she was healthy enough to survive sleeping through a five hour procedure.  And one with pulmonology since (she has a history of asthma), to make sure she is breathing well enough to survive transplatation.  We had no difficulty with either exam,since she just had her first surgey without complications, and since her last asthma attack was about seven years ago.

But what am most grateful for is that a good friend who lives about a thousand miles away suddenly turned up at my door while I was loading up to leave.  You see, I had this insane plan to run Babygirl's gravity dialysis IN THE CAR while we were driving the three hours to my sister-in-law's house.  The principle of that is that you dump in a liter or so of fluid, leave it in for an hour and then drain it out, repeat times six.  I figured we could get half of it done on the road, half at my sister-in-laws's house, and then be able to SLEEP.  But my friend, who has known me since we took a prenatal exercise class together twenty-two years ago, looked at me and said, "You are in no condition to drive.  I'll take you."

Now, seriously.  She drove from Florida.  To Boston.  And then five hours HERE.  And she wants to hop in her car and drive another three hours?  And back the next day, all while her lunatic friend juggles dialysis bottles on her garment hooks?

That's the kind of friends I have.

I'd be insane not to be grateful.  So she drove, we caught up with each other's lives, and I ran the gravity dialysis for the first time.  Needless to say it was a learning experience.  Can it be done in a car?  Yup.  Is it a good idea?  Not bad actually, but better maybe on a longer journey.  I screwed up enough that she got three runs instead of six, but I figured that was better than skipping altogether.

And after our appointments I stopped at the transplant unit to drop off a copy of our local heart doctors visit (done to make sure her high blood pressure hasn't damaged her heart - it hasn't).  They kept us an extra hour to have me sign permission to get her on the active transplant list and draw a tube of blood.

So now we are listed in two states!  Yippee!  And it WAS bliss to sleep a whole night.  Now, if it isn't to much to ask, I'd like to sleep a whole night in the same bed as my husband ;o)

DeeDee