Wednesday, July 13, 2011

a good morning!

Another quick update:

Lily woke up with a normal temperature today!  This is the first time her temp has been normal (98.6 or below) since this all started last Monday.  And we didn't need to give her any medication during the night.  I'm really hoping her fever doesn't return this afternoon.

My awesome doctor's office called again and my Pediatrician consulted with the Immunologist and the Immunologist feels that Lily has Periodic Fever Syndrome, which my doctor has mentioned before also.  My nephew was also diagnosed with this syndrome, although the removal of his tonsils (which coincided with his 3rd birthday) significantly decreased his fevers. 

I'm still going to keep an eye on Lily's joints and will ask the Immunologist about it as well.  We will get to see him late next week now, instead of August.

Most of all, I was thrilled that she didn't have an elevated temperature this morning.  I feel like my other girls have been neglected a bit through all of this and I'm hoping for a couple of fun days with them all when I'm off the next two days.  We're gonna hit the beach!

Tuesday, July 12, 2011

the latest on Lily (calling all medical sleuths)

I wish I could say she was back to normal, or that we've figured out what's going on.

But she isn't, and we haven't.

My pediatricians office considers a temperature of 101 or higher a fever.  Lily's temperature seems to spike to a fever later in the afternoon.  Her temperature has not been below 99 since we came home from the hospital.  Monday it spiked to 102.6 and this afternoon it was 101.4.

I talk to the nurse at the doctor's office daily.  They are trying to get us an earlier appointment with the immunologist.  Our current appointment is at the end of August.

Lily has continued to complain about pain in her legs.  The antibiotic shots she received two days in a row last week are quite painful, but usually that pain dissipates after 72-hours, and that was the case when she had the shots last month.  It seems that her joints might be bothering her.  This morning she didn't want to step up a curb, saying that her legs hurt.

Joint pain and the fatigue she still has and the fevers could point to a juvenile arthritis.  I'm still trying to determine where the pain is from and how present it is.  Lily was very opposed to me touching and flexing her leg joints when I told her what I was doing.  I'm experimenting with manipulating her legs without warning to see her reaction.  A few times she has withdrawn from me but once she didn't have much of a reaction.

If you love a good medical mystery, feel free to Google my kid and give me suggestions of what to check for or consider!  Anything is game at this point.

While I'm not overly worried, I am concerned and very frustrated.  It's also challenging because Lily is very fussy at times and wakes up with an elevated temperature at least once a night.  I want my happy, playful baby back.

I am thankful serious things like leukemia have been ruled out, so I'm not letting my mind get away from me, but it has to be something.

Sunday, July 10, 2011

this is the fever that never ends

If you follow me on Twitter, you know that it's been quite the week for us.  I shared this sad photo on Wednesday.  It was a rough week for our Lily-bug.

Monday (July 4) she woke up from her nap a little out of it and fussy.  By 4:30 we realized she had a fever.    After last month's episode, I knew she needed a doctor visit immediately.  We went for bloodwork first on Tuesday morning and then visited the doctor on Tuesday afternoon with the results.  Once again, her white count and CRP were elevated.  Poor munchkin had to get antibiotic shots again.  (click to read about my crazy Tuesday)

Wednesday afternoon, her fever was still raging, so we went back for more shots.  As soon as I tell Lily we are going to the doctor or when she recognizes the landmarks as we drive, she says "all better, no doctor" in the saddest, sickest voice.  And Thursday, fever still there.  We paid a lot of co-pays this week.  The doctor said if Lily's fever went up to 101 on Friday, he would admit her to the hospital.

So, guess where we ended up on Friday evening?

She actually looks happy here.  Which was obviously before the IV.  When a fever-reducer was in effect in her body, she was pleasant and would even play some.  But once her fever kicked up, she was one sick little girl.

It was an intense 24 hours.  I have such a new respect and understanding for parents of chronically ill children who spend a lot of time in the hospital.  At times I felt like I was in a different country. Everything was focused on Lily's health.

They did a pretty full work-up on her including an x-ray and ultrasound.  Thankfully, they didn't find anything serious going on, which was our biggest concern.  Lily was pretty dehydrated, so being on an IV for 24 hours was a very positive thing.  Her urine output had been very little and the IV increased it dramatically, which helped with the fever.

Unfortunately, they weren't able to identify the source of the fever and since it stayed low while we were there, they felt good discharging her.  Since she had improved and actual sleep and rest in a hospital is difficult, we were comfortable with that.  Her temperature has stayed 1-2 degrees above normal, but overall she is improving.

We will be seeing an immunologist to follow-up and hopefully figure out why Lily has these frequent fevers and if they are infections or viruses or another cause.  Right now I'm focusing on the fact that she is improving and even though this is the 7th day of her fever, it is very low and decreasing.  It is concerning to me that she has had 15 fevers in 13 months.

I am very happy that Lily is in her own bed tonight (and keeps calling us for silly things tonight) instead of in a hospital bed.  Although she actually was never in the hospital bed because it was a crib that she wanted nothing to do with.  She spent her time in the fold out bed if she wasn't in my lap.

More pictures tomorrow and things I learned being in the hospital with my daughter.

Wednesday, July 6, 2011

Tuesday, July 5, 2011

this day

I have been trying to live by the phrase "embrace this day."  I read it somewhere on the interwebs more than a year ago.  And it keeps coming back to me.

The idea being, I need to live the day, whatever it holds, the good and the bad.  There will be things about each day that I wish were different, there will be challenges and circumstances beyond my control.  But wallowing in self-pity and always looking at the "greener" grass in someone else's life will get me nowhere.

If I trust God, I trust what each day holds.  I need to be able to say, "this is the day the Lord made" even when I don't like what it's the day.  To embrace this day, as well as those days.

You'll be hearing more about this from me soon., has been one of "those days".  A day that I struggle to embrace.  A day that threatens to swallow me.

I've had a cold for almost a week now.  Sunday it took my voice, which has been lovely.  I sound like a lifelong smoker today.  Monday I ran a 9.3 mile race.  I enjoyed it, but it was tough due to the cold, difficulty breathing and a very nasty raw piece of foot.  The house is a disaster, because we've been having too much fun this holiday weekend.

I was up at 5am on Monday for my race.  I arrived back home around 9:30am and we headed to Bean's moms condo to swim for a bit.  I tried to nap in the afternoon, but for some reason was only succesful in heavy dozing and daydreaming.

We headed to some friends for a 4th of July tradition of BBQ, sundaes and firework viewing from their front driveway.  Within 30 minutes of arrival, Lily was hit hard with illness.  Again.  Her fever quickly rose and I ran to get some Motrin.  She perked up for a few hours, but was down again later in the evening.

It was a difficult night for her.  Bean and I didn't get much sleep.

VBS started today for the older girls.  I was able to call the doctor office and get them to order bloodwork in light of last months illness episode.  This way I could go to an afternoon appointment with bloodwork results already in.

This was my morning.

Pick up my niece (on my way, so no big deal)
Drop three girls at church for VBS
Drive 20 minutes to lab...stopping off to get cash because I have to pay for parking
Call the DMV 800 number to reschedule an appointment I had this afternoon for my expired license because I needed to bring Lily to the doctor instead.
The lab doesn't have our bloodwork orders
While I'm calling the doctor's office, the DMV calls me back, and it takes FOREVER for her to reschedule my appointment.
Call the doctor office again.  Leave a message.  Call the emergency line, which I guess was for true life-threatening emergencies.  They call me back and I wait on hold again to talk to the nurse.
The doctor hasn't signed the orders, so he does.  grrrrrr
Finally get the bloodwork done.  This was our third visit, and she knows what's coming.  On our way there, in her lethargic voice she said "all better, no doctor."
Take Lily to my mother-in-law's
Race to work for a meeting, for which they are waiting for me
Almost to work and the nurse calls.  Bloodwork is already back and her counts show infection again.
Meeting, coordinating kids for the afternoon, speed through the must-do's for today at work (already a short week with the Monday holiday)
Pick up Lily and spend over an hour at the doctor waiting, talking, getting shots and waiting some more

It has been a difficult day to find gifts.  But I've tried.  I didn't get to eat lunch.  Which resulted in a headache, which I still have.  It's sticky today.  I've had a feverish baby laying on me much of the day.

Oh, did I mention I stunk?  And I was a sticky, sweaty mess myself?  I've been experimenting with wearing deodorant only (no antiperspirant).  Today the deodorant wasn't strong enough.  (thankfully I have back-up antiperspirant in my desk).  It was also the wrong day to wear a skirt.  I'm pretty sure I flashed a few people at the lab when I stood up with my hot, heavy toddler and my skirt was stuck to my skin and all bunched up.   Sorry folks.

A hard day to embrace.

But I have a flexible job that cares about my family and is supportive of my priorities as a mommy.  I was smart enough to request bloodwork first, instead of two visits to the doctor office in one day.  I was really hoping it wouldn't show anything.  But the pattern is the same, and deep down I knew.

I just wish I really knew what was going on.  I wish someone knew.  Toddlers shouldn't get strong bacterial infections 4 weeks apart.  They are doing a few cultures to try and identify the bacteria.  And waiting to see if the antibiotic shots knock down the fever.

Looking back, I see I never posted a true follow-up to last month's illness.  Her urine culture never grew anything.  So the doctor said there was no way of knowing exactly where the bacteria originated from and how long it had been around, since she's been having these monthly fevers almost all year.  Repeat bloodwork was normal, so we thought all was good.  Guess not, because this nasty thing is back.

I just want answers.

Those I can embrace.

Saturday, July 2, 2011

Happy long weekend

Practicing Yankee Doodle Dandee for church on Sunday.

All-Star Baseball games, dusty lots & blazing heat.

Sprinklers topped with otter pops.

BBQ and family.

Bathing suits on doorknobs all through the house.

Summer is here. June and most of her gloom are gone. My quarter-Mexican (with a dash of Cherokee) children are bronzing quite nicely.

However this mama is trying to not get pink and achieve a slightly darker shade of white.

I hope you are enjoying your long weekend. Ours is full as always, but we are together and thats what matters most.

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