Monday, March 30, 2015

Granddaddy Migraine.....

Last week I worked five full days.  Looking back, that hasn't happened more than once or twice this year so far due to sickness, doctor visits, planned days off and emergencies with Babygirl.  But last week was FULL.  Not crazy arrive-at-eight-and-stay-until-seven insanity, but each day had a pretty busy schedule, and I was there each and every day.

Friday morning, during my weekly paperwork hour, I got anxious.  I'm not an anxious person, so I got cranky.  By two o'clock I was laughing with patients over some silly word substitutions.  And my neck ached. 

By six, I was home, and the ache had moved from the front right side to the area under my skull.  And from then on, I don't remember much.  I think hubby made dinner.  I know I ate some.  I know I was supposed to get Squeaker - he was to spend the night because his parents were working an extra shift on Saturday morning.  I know I didn't get him. There were medications. There were sunglasses.  There was that sickening sensation that the back of my scalp was corrugating, and the frightening conviction that the left side of my head was going to blow off (when in fact, as usual, it was the right side). 

I woke up at six AM.  I'm not sure when I went to bed, or how I got there.

Saturday morning was okay.  I was clumsy, but energetic enough to get through the morning's cleaning and take Squeaker and Babygirl to the grocery store and then the pet store.  (Squeaker discovered that he likes puppies in theory, but not necessarily being in a room full of them when they are all excited to see him and jumping and kissing and stealing his hat.)  In the afternoon and evening the pain played peek-a-boo in an irritating way.  I survived a visit to Doodlebug's birthday party (at the neighborhood bowling alley, for the love of ALL that is holy) and I went to bed, slept for three hours, and was unable to sleep any more despite getting up at 2 to take a Benadryl. 

Sunday was okay in the morning.  After church choir practice?  Not so much.  Hitting a high note points out exactly where the pain still is, throbbing nicely in time with the vibrato.  Oh, director, want to do that last page again?  Sure. One more time?  Absolutely.  Again?  Can I kill you now you sadistic little Russian lunatic?

And yesterday was the day that JuJuBee decided, after being AWOL since Christmas, that she missed her sisters and her girls missed her aunties and Grandma.  Now, don't get me wrong:  I love Boo and Sunny to pieces and have missed seeing them regularly, but adding two screechy little girls to an exuberant little boy in a small house where the preferred toy is a set of wooden blocks...

I took them shopping for Easter dresses.  It was the quieter choice. 

They stayed all day, and despite the pain it was a joy to see them all, but I took a nap for a bit after dinner, and I wasn't sad to take them all home.

This morning there is still just a little pain over my right eye.  And it is still a struggle to say 'right' instead of 'left.'  Thankfully I am only working three days this week:  Babygirl has an appointment Thursday and I took Friday off in case they admit her again.   

DeeDee

Sunday, March 22, 2015

Sitting in the Light.....

Today is my birthday.  I rarely have my birthday off.  Unless it happens to fall on a weekend, I don't ask the day off because it seems silly to me.  I celebrate the kids.  I don't need a fuss.  (Which doesn't mean I don't like to be remembered:  One of the nice things about social media is that it reminds everybody when the birthdays are so we can at least send out a greeting.  I like it.)

No day would be complete without a doctor visit, so Squeaker went to the walk in for HIS pinkeye.  Good thing, too - turns out he also has an ear infection.  Hopefully that's it for the week.

So today was an average Sunday, plus a "Happy Birthday" at church, and strawberry shortcake for desert at home. (My dinner choice was grilled salmon.  Hubby rocks the grill!).  Sunday is Curlygirl's laundry day, so Squeaker was there.  "Happy Birfday, Gamma!" he said.  "You're a butt kisser," mumbled Hubby.  "Yes, I AM!" agreed Squeaker.  Best laugh of the day.

But my big gift was given quietly, and might not have been noticed by anyone but me.

Babygirl sat in the living room with me, watching a video on her tablet.  With the lights on.  In fact, SHE was the one who turned the lights on in the first place.

My neighbors can probably vouch for the fact that our house is usually pretty dark.  It's been over two years since I can recall Babygirl voluntarily turning on a high-wattage bulb, let alone staying in the room with it once it was lit.

It has been three weeks since her last big headache.

She hasn't exactly been pain-free. She's still plagued by sore throats and head congestion.  But for those of you who have been following this blog, you will remember posts devoted to the astounding joy of a headache-free DAY.  And you may recall that it's been a while since one of those.  Three weeks.  I'm almost afraid to breathe, to speak it out loud; superstitiously terrified to claim good news as truth as opposed to something like the witches candy house after being lost in the forest of pain. 

I can understand why I'm afraid.  The kidney transplant was a miracle that took away her dialysis pain, only to replace it with the headaches after six months of normal pain-free life. 

Dear God, If you are going to heal my baby, heal her good this time.  Please?

DeeDee

Friday, March 20, 2015

What's Another Ten Bucks?.......

I was surprised to see that my last post was five days ago.  Not in the, "Holy cow, how did I let five days go by without saying anything!" sense, but in the, "How is it possible that we have only been home FIVE DAYS?" sense.  It feels like a full week at least, ten days maybe. 

Sunday's discharge from the hospital took over three hours.  I finally went out to the nurses station and asked for a Band-Aid so I could take out her IV and go home, since we had a four hour drive in front of us and we wanted to get home before dark, and we really didn't need any papers.  That got people moving. 

I'd already taken Monday off because of the potential biopsy, so I spent the entire day catching up on laundry and making dozens of phone calls:  Follow up with neurology.  Reschedule long-term follow up with nephrology to match follow up with neurology.  Arrange short-term follow up with nephrology and decide what day they want us to do blood work locally, and do we need to go to Syracuse for it or do it here?  Contact the local doc to get follow up for the asthma and sinuses.  Check on medication supplies and phone in refills.  Reschedule missed appointments for me and Hubby.  Arrange nurse visits and physical therapy for Mom.  Pay bills and figure out the taxes (finally).  Pick up bread and milk at the store.

Tuesday morning we went to see our local doctor.  His decision:  Increase the prednisone for three days,  add a steroid inhaler twice daily and add some to the blood work to assess for inflammation to see if the infection is less severe than when she was admitted last week.  A stop at WalMart for some diet ginger ale to help with the fluid intake, and then back to work for me.

Wednesday, Thursday and Friday were busy work and catch-up days.  And Hubby was ill all week, whatever we've all had finally catching up to him. 

On Thursday I sent him to the pharmacy to pick up all of Babygirl's medications.  The total price of the copayments? $476.  Four. Hundred.  Seventy-six.

It's been three years since the transplant.  According to Medicare guidelines, kidney transplant patients are covered for three years after transplant.  We got a letter saying her time was up February 28th.  And this was our first medication pick up since.

Ouch.

Mind you, this won't be the monthly total.  It included three each of two inhalers that she likely won't need long, and that was more than a third of the total.  But holy freakin' COW on the day before payday. 

Tonight we went to a local diner to eat, and as I sat looking at Babygirl, she looked....odd.  "What's up with your eye?" "I dunno.  It was full of boogers this morning, and when I got up from my nap."  Criminey.  First strep throat and now pinkeye?  How in the name of ALL that's holy does a kid who lives in complete isolation come down with this stuff?

For those of you who haven't been to the new walk-in on Shipper's Road I highly recommend it.  We got there at 7:30 and were out, pharmacy visit for eye drops included, by 8:10.  Oh, and for a mere $10 pharmacy co-pay.

Babygirl wants to shopping at Target tomorrow.  I'm exhausted just thinking about it.

DeeDee

Sunday, March 15, 2015

The Ides of March.....

The results are all in:  There is no urinary tract infection (good thing I'm not one to say "I told you so").  Her throat culture is negative, so the antibiotic 2 weeks ago at least cleared the strep. The inhaler has brought the cough to manageable proportions and time or the current antibiotics have stopped the constant nasal crap.  He creatinine this morning is down to 1.1, not fabulous but still moving in the right direction. 

We will be coming home.

Right now our only change is an increase in her daily bicarbonate dose.  It is presumed that the excess acid in her system is a side effect of her new headache medication and of no real concern.  Her prednisone dose is being returned to normal.  She is to continue using the inhaler.  We are to get blood work locally in one week and return for a recheck here in two. 

I plan to get her in to the family doc on Monday to assess the asthma treatment and get that optimized.  I'm thinking that just a rescue inhaler after three weeks of coughing might not do it. 

She's still tired, and she's still not eating, but she looks better. 

And as a side note, when they come in to do her vital signs and ask the 'do you have any pain' question, the answer has frequently been, "No."

That word is a miracle.  No?  No pain?  We've been here since Friday evening and she's had one minor headache. 

The Ides of March might not have worked out so well for Caesar, but I'm pretty cool with it so far.

DeeDee

Saturday, March 14, 2015

Pi Day.....

No pie for us on Pi day.  But other than that we can't complain.  Babygirl's creatinine came down from 1.7 to 1.2, making the biopsy on Monday unlikely.  In fact, they offered to let us go today, which offer I turned down.

Why, you say?  Are you NUTS?

Keep in mind that home is four hours from here.  We didn't come prepared for a long stay - I have one dose of Babygirl's medication left, an evening dose.  We have a two-day-in-a-row run of disastrous readings with no good explanation for why, one day of improvement, and no definitive treatment except for fluid, which she's been unable to manage orally for the past three weeks or we wouldn't BE here, right?

So, are THEY nuts?

Dr. L, the on-call nephrologist, whom we haven't seen since shortly after the transplant ("My goodness, you have grown UP!" was his comment to Babygirl when he saw her), saw the incredulity on my face when the intern suggested discharge.  He smiled and said, "Tomorrow is soon enough if the downward trend continues."

I pushed AGAIN for better management of her asthma, which I am increasingly convinced is really the root of the dehydration.  Steady use of inhalers have brought that under better control.  She slept all day, and awoke an hour ago looking like something human instead of a pale beige zombie. 

So she's spent her day snoozing.  She's eating very little, but drinking pretty well.  I've been reading and answering my phone (seriously. I'm. On. Call.  One observant caller heard Babygirl's IV beeping in the background and said, "Sounds like you're busy at the hospital."  "Yes, yes I am."  You have no idea).

I'll make it through another evening.  Even though I'm missing the Ambler Pub Crawl, my Sis-in-law came by with airplane-sized bottles of Jameson, Bailey's and Godiva.  Yeah, I'll be okay.

DeeDee

Friday, March 13, 2015

Friday the 13th.......

At about 3:30 AM the coughing had been going on steadily for about three hours.  It didn't really matter much:  Sleep wasn't on my list anyway, apparently.  I finally got up an rummaged through my purse for my inhaler and made Babygirl use it.  Half an hour later she finally quieted, and we slept.

At 6 we got up, packed our bags, loaded the car and started for Philly.  Yesterday we left five minutes too late and took an extra forty minutes in traffic, so I made sure to leave on time, but....the police barricade between us and our on-ramp was problematic.  You see, I know exactly ONE way to get where I am going and I have a dumb phone and no GPS.  So I did the next best thing:  I followed the rest of the folks making U-turns and prayed they were going the same way I was.  They led me to the next on-ramp, bless them.  Getting back home was more complex and required directions from a group of Korean mechanics with map ap on their iPad.

We got in, had breakfast, got blood work and left.  We could have had the blood drawn at our appointment with neurology, but it was in the afternoon and 20 miles off campus, so the results wouldn't be available until evening.  If they're better, we want to be home by then, right?

Back at my Sis-in-law's, Babygirl took a nap while I went to work remotely, something I can't do while at CHOP because I have no secure line.  While I was working the calls started rolling in:  Mom's doctor's nurse, re- rescheduling her appointment to see him.  Home health nurses.  Pharmacies.  Seriously folks, I can only do one medical crisis at a time.  Hubby's number given to all.  Then the call from CHOP:  "Her creatinine went UP more to 1.7.  We're scheduling  biopsy for later today. Don't let her eat or drink anything." 

Fabulous.

I awaken Babygirl with the news and clamber back into the car to head to the off-campus appointment in King of Prussia:  "It's easy to find - it's across from the mall!".  Well.  The KOP Mall is the second largest mall in America so you can imagine that there is about 10 miles of "across the street" involved in that. While I was struggling to find it the phone calls keep coming in:  "She's too sick because of her cold to do the biopsy under sedation.  We may have to admit her for  a few days to make her better first."  "Ignore that.  They'll do it under general anesthesia."   By the time I arrived I was swearing (and crying behind my sunglasses), but still a good 40 minutes early.  I pulled myself together and went in, to be informed that our appointment was ON campus.  The receptionist offered to call and cancel for us since we "clearly weren't going to make it."  Oh, HELL, no. I'll make it. And we did.  I just drove down the Sure-Kill expressway like a Boston Driver through the Big Dig.  We were on time for our 1 PM appointment.  And we waited 45 minutes for the NP to come in. 

While we waited the phone calls came in:  Mom's doctor's office confirming the new location of her prescriptions.  Nephrology, wanting to know when we anticipated arriving 'on campus' - good news - we're here!  Anesthesiology wanting to see Babygirl before the procedure which is, as you know, any minute now and could you go and FIND the NP and tell her to get her ass in gear?  Somewhere along in the middle of all this the building caught fire.  Not near us, certainly, but a real fire one floor up, so the alarms and, OMGoodness, the flashingflashingflashing lights....the worst possible thing on a Neuro floor.

I can feel my blood pressure rising as I search an unfamiliar area for someone I've never met before.

When the neurology NP finally arrived, she called the nephrology fellow and spoke to her.  She smiled at me and said, "Breaking news!  They think Babygirl has a urinary tract infection, so no biopsy today!  Just report for admission and antibiotics when we are done here."  The visit went well, except for the phone calls:  "Could you give us your mother's Medicare number?" and texts:  "We've cancelled Monday's patients - keep us posted."  Finally finished, we head for bed-and-board to get a room assignment. 

While they are verifying addresses, phone numbers and insurance, the phone rings.  It's nephrology, wondering where we are.  Our NP comes over, fills us in on the plan, and then tells us that before we can go to our room we STILL have to see anesthesiology because they MIGHT still do the biopsy on Monday, and they'd rather be ready than scramble.  Hmm.  You mean, like the last 10 hours? 

Neurology and anesthesia are in the same building.  Bed-and-board is a block away.  We hike back. 

Did I mention that Babygirl is actually ill?  Ill enough to be admitted to the best children's hospital in the country? Putting 100 miles of ugly traffic and 2 miles of hiking under a kid this sick just seems mean. 

The anesthesiologist was nice.  It almost didn't feel like a strain to go through Babygirl's incredibly long medication list one pill at a time for the 4th (and not final) time.  She gave pre-op instructions for if we are still here, and for if we are discharged and come back for the biopsy ("Make sure they put THESE stickers on her blood the day before or we'll have to it again" like I'll remember?). 

Back to bed-and-board.  Up to a room.  Six doctors and an ultrasound later, we're still waiting for her 7 PM medications at 10 PM.  I'm too tired to get mad. 

Maybe tomorrow I'll work up the energy to pitch a fit or something.

Oh, and guess what room we're in?  13.  At least it's only the 5th floor.

DeeDee

Thursday, March 12, 2015

Bad News on World Kidney Day......

This is our first visit to the transplant team since late fall, and it just happened to fall on World Kidney Day.  Babygirl has been sick for over three weeks now with an evil cold.  She was diagnosed with strep throat more than ten days ago, finished a fairly broad-spectrum antibiotic, and is still coughing and blowing what looks like liquefied brains out of her nose.  Her appetite has been poor, she's been gagging on some of her food, and she horked up one dose of pills a few days ago.

It hasn't been pretty.

Last night she was pale and pasty and complained that her ears and throat hurt.   She coughed all night, but there has been no fever.  After her blood work this morning she selected salad for breakfast and ate about six bites of it. 

Really not pretty.

We met with Dr. B (back from his sabbatical in Peru) and learned that her creatinine had leaped from 0.9 to 1.5, and her hemoglobin dropped from 12.8 to 9.6.  Her blood is very acidic again despite the fact that we have been giving her pills to counteract that problem.  The nurse practitioner saw the results first and predicted that Dr. B would admit her. 

REALLY ugly.  Babygirl was not at all pleased at this thought.

But Dr. B surprised us.  He is the most careful and conservative of the group, but he heard we were staying local and seeing the neurologists tomorrow at 1 PM.  She is to drink a ton of fluid, and blood work is to be redrawn.  He will decide what to do depending on what they find.

Awesome. 

Glad I packed a prayer shawl.

DeeDee