Friday, December 27, 2013

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 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.

Monday, December 16, 2013

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 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  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?