October 15, 2012

It had been a while but felt so oddly familiar

Annabelle has been blessed with great health this last year and a half so when she started showing signs of sickness this week I almost went into a panic.  When you have a child with Spina Bifida and they start acting "a little off" your first thought is OH NO a shunt malfunction.  We have a love/hate relationship with Annabelle's shunt.  We love that it keeps her healthy but hate that she has to have it and that they have a history of malfunctioning.  If it's not the shunt than most likely its a UTI (urinary tract infection).  Annabelle would get UTI's all the time prior to getting her G-tube in April 2011.  Thankfully, getting the G-tube completely changed our lives (for the better) and practically stopped the UTI's.  What a blessing! 

I had noticed on Wednesday that Annabelle's appetite seemed a bit off and she also had a few cloudy caths but overall nothing too alarming.  Then on Friday afternoon she made it pretty clear that she didn't feel good and was overly tired.  She actually laid down on the rug in Benjamin's classroom when I was talking with his teacher after school.  This is NOT Annabelle's style at all, even when tired.  When I got her home she had a temperature of 101.5 and was really net feeling well.  We made it through the night without incident but on Saturday morning it was apparent that she was sick when she didn't want to wake up.  At 11 am I finally said okay sweet girl it's time to get up!  She said her head hurt and that she felt sick.  I could tell she was miserable.  When I sat her up her forehead seemed to be slightly bulging and she was extremely sensitive to light.  She was crying a lot and holding her head.  I called her Pediatrician and we decided that since it was Saturday and we were concerned about the shunt than a visit to the ER would be necessary.  I was disappointed but knew we had no choice.

There was a time when packing a bag to head to the ER was an every month occurrence, but not anymore (thank you Lord!).  It felt so wrong yet so very familiar.  I walked from room to room practically emotionless gathering what my head knew to bring.  Sadly, those memories never go away and apparently they haven't for Annabelle either.  She was not happy when we I told her where we were going.  It was heartbreaking to see her so upset.  Thankfully, in typical Annabelle style she accepted where we were headed and gave kisses and hugs to her dad and brothers before getting into the car.  She was even willing to give her dad a small smile when he asked if he could take her picture before we left.

My sweet girl asked to wear her sunglasses because it was too bright.  She ended up keeping them on until she had her CT Scan a few hours after arriving at the hospital.  The hospital staff thought she was so cute.
When we arrived her temperature was 102. She quickly went down hill.  Here we are waiting for her to get her shunt series which consists of a CT Scan of her head and x-rays of her head and abdomen. 
            She was so brave and held perfectly still just like they asked her to.  I knew she was scared but she held her emotions together and did exactly what they needed her to do get the pictures.  By the time we were done with all of her tests she had a temperature of 103.5 and she was miserable.
Look at those rosy cheeks and lips.
She's not wearing makeup friends - she's burning up!

Once the Tylenol started to work I was able to see signs of my happy girl coming back to me.  We were more than pleased when the report came back showing that the shunt was indeed working properly and that the urine was showing signs of infection.  For us, this truly is the best case possible.  Now it was time for the doctor to pick an antibiotic that will hopefully knock out the infection.  In the first 48 - 72 hours of UTI diagnosis unfortunately the medicine choice is really a guessing game.  The doctor will look at the initial lab results as well as any past lab results to try and pick the best one. Unfortunately, until the completed results are received (usually 3 days later) the exact medicine is unknown.  The ER doctor first chose Bactrum (sp?) but ultimately changed to Cipro for Annabelle.  Cipro is a strong medicine with known long term side effects.  It's not my favorite medicine, but Annabelle's has taken it before and thankfully had success.  We were released about an hour later.  After being what Annabelle's nurse called a "very knowledgeable and well organized mom" at the hospital I was ready to go home and collapse.  The hospital is a very stressful place!  I held it together as long as I could and once I knew Annabelle was going to be okay I realized that I really felt like crap.  I was starving, my head was pounding and I was emotionally and physically exhausted.  If you've never been alone at the hospital with a child you probably don't realize how hard it can actually be.  Going to the bathroom or getting something to eat or drink is nearly impossible.  If that child can't walk and is too scared or emotional to lay in the hospital bed guess where they are?  Yep, in your arms!  This mom need to seriously start working out because my girl is getting heavy.
I'm not complaining though I love holding and snuggling my girl.  This episode was just another reminder for us to take life slow and enjoy every moment of it.  I actually think we are doing a really good job at that right now.  Maybe not so much with people outside of our immediate family, but we really are cherishing every moment with our kids.  Annabelle's good health has allowed us to put the boys in a different (smaller) school where we both get to volunteer on a weekly basis.  We opted not to send Annabelle to preschool in September as we has been instructed to do and this has been an amazing gift.  Waking up each morning and spending a few one on one hours with my precious girl is priceless.  Because Annabelle is our third child we know all to well that you will never (ever) get this time back.  I am determined to not waste away any of this precious time.
So, it's late on Sunday night and sadly she hasn't responded as well as we would have hoped she would to the medicine.  Her fever is still ranging between 101. 5 and 102.5 and she actually threw up earlier tonight.  This was definitely disappointing as it seems the infection is not clearing up.  The good news is that we are not stressing that maybe its the shunt.  We know this is a UTI and that we just need to get her the right medicine.  I'm thankful for my clear head and happy heart oh and that she threw up on Branden and not me (sorry, just being honest).  Thankfully, I am at a place now that I feel much better prepared to handle what life throws at me.  Obviously, I'm hoping we don't get any curve balls and that we can get back to our normal routine again very soon.  I am grateful for all of the messages of love we received this weekend.  It's so awesome to know that we have supporters all across the country.  My Facebook village once again didn't disappoint.  Thank you for holding me up!                     

1 comment:

  1. I am praying the medicine takes affect soon and she starts to feel better. All of our love to all of you. xoxo <3