Nurse Urology Weighs in

Today we saw the pediatric urologist nurse practitioner.  She was supremely nice. Also, I've never seen a more decorated office EVER.  The exam room Lillian was in was deemed the "princess suite" and appropriately so I might add.  The whole room was pink complete with a decorative mirror at kid level surrounded with a pink and white feather boa.  Each room had a theme.  The waiting room was even covered in kid decor.  Anyway...they don't want to DO anything with her at this point.  She spent quite a lot of time getting history. She did say she would like her to have a DMSA test.  I asked what that was and she said, oh and IV with dye and then some pictures.  She said it would take a couple hours.  It would determine whether or not she has any scar tissue in her kidneys.  We get in the car and I google the test...#1 it's a nuclear med test #2 it takes three to four hours  just for the kidneys to absorb the dye #3 then she has to have the xrays.  Can I just tell you how quickly I flash backed to the nightmare vcug???  So, at this point I have more reservations about her having that test than I feel about her really needing it.  It's not going to change her treatment and right now she's not symptomatic.  She also said I need to have her urine tested any time she has a fever over 101. Wow, that might be an awful lot of urinalysis tests.  They want to see her again in three months.  OH- and as she was reading some of the ct's and xrays, she informed me that there is a cyst on her spleen.  First time I heard that.  She said it's no different than having a cyst anywhere else on your body...but still...why don't we get told these things when they pop up.  That was on a CT from well over a year ago.  She is also supposed to be on a probiotic and we are also definitely to keep her on her miralax so she doesn't get constipated...which is something we constantly battle.  So many things that kind of feed into another affect Lillian because she has so many systems that are affected.  We can't add more to her liquids because she has volume issues....oh I could go on and on how one thing flows into another...bah. It' s bit overwhelming as I process it all.  So there you have it.  I feel like this post is scattered and it probably is as my other daughter is sitting beside me asking me one question after another interrupting ever single thought I'm trying to convey.

Thank goodness for a cadbury egg on my way home and my wonderful husband for taking half a day to go with me.  Such an easier trip with another adult not to mention the adult conversation for the drive.

What a difference a day can make

Many times I spill my frustrations right here in this blog.  I share the daily struggles and stresses AND joys that I experience in being Lillian's Mom.  Of course, there is nothing like LIFE to give you renewed perspective each day.  And while the things I share are frustrating and build up and wear on me, please oh please never mistake those feelings for the grattitude and joy I have in this job as well
. A young mother, a high school senior in my daughter's class buried her 18 month old son this past week.  He had special needs and Bethany had recently shared a video of him laughing and moving his legs. Something his parents were told he wouldn't be able to do.  Tears streamed down my face yesterday as I listened to the music playing she posted on facebook of his memorial video.  I don't know why he died, if he got sick or what...but it is a stark reminder that tomorrow is never promised to us.

It takes me back to those NICU days...I counted at least five babies in the six weeks she was there that didn't make it out of the very unit we all shared.

So today, I find myself grateful to have:
a pharmacy to fight with about medications and preauth letters...
an insurance company to cover the costs of a urologist
and a doctor to follow up on tests even if I have to call 100 times.
Formula and feeding bags to prepare each day
 and most definitely a skinny little bottom that doesn't fit in her britches

She lives.  Period.

Seems like at times

one thing piles on another after another after another..then some little something that is absolutely miniscule sends me into a weeping heap. It's been one of those kind of weeks or two..hee. Yep, the other morning, I was trying to get her dressed and I kept pulling out one pair of pants after another that just weren't fitting.  Threw me right over the edge.  Kinda funny when I think about it now.  But seriously...we had an issue with the pharmacy...big shocker.  So let me see if I can give a short version.  She's on a very expensive IV antibiotic that is given by nebs.  She's been on it for a year.  Requires preauth from insurance.  I call in the refill.  I call in 3 different meds actually.  Three days later hubs goes to pick up drugs (I've received a preauth letter in the mail the day after calling it in) comes home with no antibiotic but with a note on the bag stating they need preauth.  HELLO?  They are the ones who initiate the preauth but they don't check to see if it comes when you come to pick up the meds when there is a note on the bag???  One of the other drugs was out of refills, which I did not know.  So they faxed a request to her physician who does not accept faxes on refills.  I have to call them.  But since no one let me know...no refill.  They graciously offer to sell it to me OTC even though her insurance covers it in full!!  After a fight basically I get the meds.  BUT COME ON...REALLY?  Just another day...so she had the VCUG and kidney and bladder ultrasound weeks ago.  I call the dr a week ago and ask about results.  I knew there was reflux but I didn't know the extent and I had no results on the ultrasound.  I was on the cusp of calling again when they finally call me to tell me "there is grade 2 reflux in the kidneys" and I wait....you know, to see what the plan is since that is worse than the last time we checked her kidneys.  She says nothing.  I tell her, this is worse, what does the dr want to do....her response "hmm, I don't know he didn't tell me that" She calls me back and tells me he wants to refer her to a UROLOGIST.  Ok.  What urologist do I want to use?  I don't know, I don't have a rolodex of pediatric urologists in my brain.  I don't even know who is on the insurance.  Isn't there a referral nurse who handles these things?So then I call insurance and she's happy to send me a list of specialists for the kidneys.  I get the email.  A whole list of pediatric NEUROLOGISTS. I keep thinking I must have ridiculously high expectations.  You think?
  I'm sure lack of sleep and housatosis all play into this.  Oh yeah, and after the sewer back up disaster that puts us back into house hunter mode again.Which is a whole other frustrating situation all on it's own.   This past weekend my mother in law has a fall that causes a very bad head bleed.  She remains in critical care, but I believe she is out of the woods on the bleed..just a ton of recovery ahead of her.
 So, why, you ask does a silly pair of pants cause such a reaction...well it brings to light her slightness, how very tiny she is.  Not to mention she spent the entire day yesterday stumbling around quite a bit more than usual.  By evening she takes a couple bad falls.  Which has me wondering if her ears are out of whack or maybe its her sinuses?  Never ending.

Housatosis (house-a-toe-sis): the inability to leave ones home for an extended period of time causing stir crazy behavior.  

Status Post VCUG

What a terrible, I say terrible way to start a morning.  We arrived bright and early to Kosair for Lillian's appointment, which we needed to be a half an hour early for only to have to wait and additional 40 minutes plus after her scheduled appointment for when fluoro was ready for her.  Grr.  You know, waiting is just a part of it all...but it just increased her anxiety by leaps and bounds.  They gave her a dose of versed...the versed essentially is just supposed to give them amnesia....well I sure hope it worked.  It was awful.  It took four of us to hold her down...she was screaming bloody murder and fighting with every little ounce of her being.  The procedure is as follows, they have to put in a catheter and fill her bladder until she basically can't hold it and pees and then they take xrays to see what happens when she is peeing.  There you go.  The machine is huge which is really what terrifies her...it was awful.  She kept screaming "DONE DONE DONE" while weeping and fighting and screaming and wailing.  At one point it was so pitiful that I almost broke down into tears myself and I just knew that would make it all worse. One word...TRAU.MAT.IC.  Then I was upset because they told her when she peed it would be all over so when she peed and she wanted up, they continued taking pictures. Hello, they shouldn't tell her it's going to be over until it's really going to be over.  *shaking head*
My nerves were shot and I still feel bad about it.  After it was over she was totally hung over from the versed. She couldn't walk, but she doesn't know she can't walk because she's gorked out of her head.  So we get her strapped in the stroller and head to take the other girls shopping with their Christmas money.  First thing on the agenda needing to be lunch and it was a nut house at Chikfila, so we head to the local mall and finally get something and Lillian is just emotionally all over the place.  Crying every other minute and me wondering what in the world I could have been thinking that shopping was a good idea.  I really wanted to cut bait and run so to say, but I truly didn't want to disappoint the other girls.  I was totally exhausted physically and mentally.  I could not get the days earlier events off my mind.  Then I had nightmares through the night about the girls being caught in a fire and not being able to save them and actually watching two of them burn alive.  OH- AND- this is the ONLY good thing about this test...the radiologist is right there doing it and so she was able to tell me the results immediately..which unfortunately was not good news.  She still has reflux in both kidneys.  BAH. As I sit here and reflect on the whole thing I feel even worse because I don't think I ever thought to pray that she would go through the test without so much trauma.  :/ So now we will have to wait and see what course we take next, I'm thinking at this point she's going to need stints.  I don't know though.  This whole ordeal leaves me with one thought alone...I wish I had some versed because I'd sure like to have some amnesia.   People tell me all the time how strong I am...folks let me tell you it is heart breaking sometimes and it takes a mental toll I don't think I can ever really explain to someone who isn't walking through it.  Not only do I have to deal with these issues there are bills and insurance and SSI and therapies and endless...endless other things to take care of.  I'm no different and it's rough and it seems like the last couple weeks have been stressful ones in one respect or another.  I think I need a good cry and some versed...did I say that already?

Anyway, we had a wonderful Christmas and I'll post some of our Christmas Eve pics as soon as I get them on my PC...I didn't get any Christmas pics because I was nursing the little man while everyone opened gifts, but as soon as I copy the ones that were taken I'll be sharing.

A traumatic day

Let me just preface this by saying....Lillian has endured much worse.  Many many children endure rough events and health related issues that are awful every day...but just today in our little world Lillian had a bad day. I totally have perspective...just documenting our journey here. We had her well child visit at the end of November and we went over all her "systems" persei...and I knew it had been a while since we had a look at those kidneys...I didn't, however, know it'd been three years...eek.  Well, anyway, the kidney ultrasound and VCUG were scheduled  at the hospital thirty minutes away and after a series of phone calls, a cancellation due to inclimate weather, and the little voice telling me to get it done at a children's hospital...that's how it ended up.  We went down today for her tests.  She wept pitifully as the ultrasounded her kidneys...thank goodness Matt went down with me, I could not have done it alone along with baby brother.  So then we were sent to another waiting room to await the VCUG.  They finally came and got us and let me tell you, she was freaking out. Long story short...the procedure didn't happen and we had to leave and reschedule.  OF course, I was annoyed bc I thought there would be like protocol in place for kids needing sedation.  Course, I really wasn't sure she would need sedation.  It just turned out horribly.  So now, she will have to be sedated...again. I hate sedation.  It's never fun to have airway challenged kids go under sedation and I'm pretty sure versed will not do the trick this time.  I'm sure most mom's can agree it is exhausting to have to put your child through so much stuff and its hard.  Even though you know it must be done and you move right along through knowing it is a necessary evil....it just plain stinks.  It hurts. Plain and simple.

Now, perhaps I'm just tired....our basement filled with sewer water over the weekend due to a city sewer blockage.  Need I say more?

Last month we also had her pulmonologist visit.  I took the trip alone with Ezekiel and Lillian.  What an entertaining day that was.  That office has a strict ten minute late policy.  If you are late you are sent home or "worked in".  So, I get them loaded and get on the road only to drive right up the ramp into stopped interstate traffic.  For 30-45 minutes.  Standing still.  In which I had to pull off the road twice because the baby was screaming bloody murder.  I was frantic calling the office (which noone would answer) explaining the situation.  They finally call me back and telll me to keep coming.  In my haste to get into the office, I failed to notate what level I'm on in the garage.  (but I dont' realize that until I go to get back on the elevator to leave) I get into the office late, the waiting room is full and my son is screaming at the top of his lungs demanding to be fed.  I know more than start nursing him and they call her back.  We spent less than 15 minutes in a treatment room seeing the doctor.  I have to pit stop in the bathroom in which I almost trapped myself in because of the stroller.  Finally make it to the elevator to realize my mistake in parking.  I had to get off and on the elevator three times to find my level.  Had to pull of the interstate to hold my boy because he's majorly unhappy to have to have been sitting in his car seat all.day.long.  Are you laughing?  I am. It's comical now, I actually giggled about it as I replayed the days events in my head on the car ride home.  Never a dull moment. HA

Overall, her health has been much better this winter, but she is not in therapy or school and we have pulled out of church for the flu season.   On the other hand, she has some strange behaviors that have been kicking up.  She all of a sudden hates certain types of music.  We rented Monsters U and she hated it because of all the band type music.  She wanted it turned off. She's been freaking out at loud noises of any kind.    She has also been making this strange sound with her mouth and she will do it over and over and over again.  Sounds like she's swallowing a burp, but she's not  and I can't get her to stop doing it. :/ I notice she tends to want to scratch at herself, legs, arms, head, even in her sleep.  It doesn't appear that she has dry skin or anything like that.

I don't know why all of a sudden I feel like I'm saying something wrong if I mention something that makes me sad in regards to her, but some things just make me sad.  I recently ordered my oldest child's cap and gown for high school graduation and I teared up bc I wondered if I would get that opportunity for Lillian.  So many tragic events happening around us lately and it reminds me of her fragility.  Life is short and we are not guaranteed a tomorrow.

IF you hung in there for this whole post...thanks!  I know it was a doozy.

Life is good for my family.  Keep us in prayers as we continue on this journey!

Did I mention she adores her brother?

Seven

Seven amazing years this sweet angel has been gifted to us.  It is hard to wrap my brain around, at times.  When I think back on this time seven years ago, I can basically recall pain.  Pain of seeing my baby suffer through such difficulties.  As she suffered, I grew.  I stretched.  I learned to lean on my Lord. For many of her years, there was suffering.  NOTICE, though, I can say MANY??  She is here despite the terrible odds we were given.  PRAISE GOD!  What a true blessing in every way she has been to us.

Here's what God has given us through  Lillian's seven years:

A closer, more intimate relationship with God

A sweeter love between my and my husband. We have learned what we really mean to each other and how important our marriage is.

Deeper compassion for others.

The ability to understand that no one is perfect and people will fail us, but He never will and it's ok that others fail, because we fail too.

We so clearly see what we've taken for granted in having good health and healthy children.  So..we try not to take things for granted anymore.

I've learned that we have had really hard times.  We still do.  I'm sure we still will...but we are so grateful and know we could have it much worse.

I could go on and on.

A friend of mine recently told me she was looking forward to the day that her daughter was out of the "give a mouse a cookie" phase.  For so long it seemed like that is where we lived too and it's good to be able to look back and see how far this girl has come...and I think she has closed the chapter on that book.  Praise the Lord.

In this last year, Lillian has increased her vocabulary to saying more words such as straw, shoe, talk, and some others.  She will eat a small container of chocolate pudding in fifteen minutes when I'm prodding her along.  She has learned to use the potty and is completely potty trained. She trick or treated in our neighborhood for the first time ever and loved every minute of it.  She has become a big sister..and a good one to boot.  This little girl is all love and she knows how to dish it out.  Not a jealous bone in her body.

Yesterday we spent the day at Grandma's house celebrating everything in "ORANGE".  Her favorite color.  We all wore orange, cake was orange, party supplies all in orange...sunkist to drink, cheddar popcorn, chex mix, and puff corn in cheese and carrots.  She got kitchen toys, roller skates, and karaoke microphone, and new clothes.  Tonight we celebrated with dinner at Mcdonalds, her favorite restaurant where big sister gave her orange play dough, orange bubbles and a giant hershey bar in an orange bag with a balloon. As we ate, an elderly couple became captivated with her and the gentleman sketched her face on a pad of paper and then they presented it to her with a five dollar bill. That is Lillian.  Her joy is infectious and she is always happily spreading it to others.  I do believe she is the favorite to each of her sisters.  It is apparent they all have a special place in their hearts for her.  We are blessed.

 She loves hoops and loops cards.  Aunt Crystal always gets her one.

She's loving every minute

This little girl LOVES her brother.  He came into our family on 9/27/13 at 8:20 pm.  After a long, hard labor.  He is beautiful and loved by one and all.  He weighed in at a whopping 8lbs 13 oz.  20.5 inches long.  It's taken me this long to post because I was discharged from delivery and then had multiple complications which found me back in the hospital several days after his birth.  Preeclampsia.  Worst I've EVER felt in life..I think.  I've had tests run on me that I've never had before.  PS- MRI's are noisy.  An hours worth of totally mind numbing noisiness.   ICK.

Anyway, Lillian has adjusted just beautifully to having Ezekiel home and spends much of the day kissing him.  I only wish she had enough strength to hold him safely on his own, but helping her is just as sweet.
Can't honestly believe it's been seven weeks already.  Where does the time go?