Lyme's Meningitis ~ Our Story

A tick the size of a fleck of pepper...a poppy seed... gave us a rough time these days I've been absent from the blog.

Lyme's Meningitis!

A total of 6 days spent in the hospital for my sweet, brave, baby girl. She was diagnosed on Monday the 2nd of July along with a half dozen other kids that came into the A.I. DuPont Children's Hospital.

A week and a day later a friend called me from the car to say the is taking her teen son for a spinal tap as well and it turns out he has it, too! She also tells me that a friend of hers at another hospital says their emergency room is brimming with this diagnosis as well!

Has the mild winter made for a worse tick season?

We never saw the tick, nor did we see the red bulls-eye on her skin. We've learned that many cases are not blessed with that indicator.

Our 7 year old complained about some on and off headaches, but it wasn't until a week past those incidences that multiple symptoms converged. Along with the head pain she also became weak, lethargic not wanting to get off the couch. She ran a slight fever and her appetite decreased, concerning us greatly was the stiffness of her neck. Advil did improve these symptoms but we knew she needed bloodwork done. The local lab took 7 vials, testing for a variety of things. She thought that was the worst thing she'd ever been through....

I hated that I had to ask for the bloodwork to be rushed and was in limbo from a Friday to Monday. The end of the normal range for Lyme's titers would be .9 and she tested at a 5 and so we were sent to the Children's Hospital knowing she had Lymes. There they wanted to confirm the Meningitis, as well, and that is done via spinal tap. The IV was upsetting enough and she was hooked up to heart monitors for an EKG and a blood pressure cuff and a pulsox reader on her finger....but at least her gown was purple! She smiled for the photo to send to her family showing all her gadgets, to impress her brothers.

The Doctors gave her Propofol, "Michael Jackson's drug of choice" the nurse joked, for the best sleep of her life. They allowed my mother and I to stay in the room during the spinal tap. I never wanted to leave her side.

It was hard to watch.

Things I remember...their tenderness. How serious and quiet and respectful the doctors were....How the head doctor positioned her into a ball, a fetal curl towards him and held her sleeping body, encircling her in his arms as the other doctor captured the drips of spinal fluid....my mother, praying the rosary nonstop...jumping to my feet at any perceived motion from her....

...how beautiful she looked sleeping, wrapped in her scapular, Our Lady's image close to her heart, as I waited just a breath away from her for her to wake up after the spinal tap....wondering if she'd feel pain in her back....

The spinal fluid showed elevated white cells, confirming Meningitis and as she awoke it was a blessing to hear she didn't remember a thing. Then it was time to give her the medicine that best treats Lyme's Meningitis. Ceftriaxone goes deepest into the central nervous system. As it went into her IV, they said it might sting a little...at first...going in. Considering her anxiety, with just the concept of the IV and that mention of sting, it seemed all right that she was upset as the medicine continued in. A doctor tried to ask her questions, assuring her she could do this but I watched my daughter begin to panic instead. She writhed, she pleaded that something was wrong. As soon as the hives started showing on her forehead I knew this wasn't dramatics and that I should have trusted her.

She was allergic to the medicine!

Benadryl administered, the hives and upset went away, thank God.  What stayed with me was a feeling that I know my daughter best. In fact, the Doctors agreed and said that's why they like parents there. Before the next treatment, they would confer with the CDC as to whether there was a comparable drug they could use instead. Long story shortened, a bit, they felt this was the best medicine and that the allergy team could desensitize her to the medicine for this course of treatment alone. In a 10 hour procedure they gave her the meds under the watchful eye of the PICU. A little every 15 minutes then a 15 minute break all aimed at building her body up to it and, importantly, pre-treating with Benadryl.

As soon as she received the very first treatment she was able to move her neck and her head pain was gone! The usual course of 3 weeks of IV meds was diminished to 2 weeks in light of her response. But an IV in the hand was not the best transport for that length of time. They had to insert a PICC line to her aorta.

This had to be done in the Operating Room...without me.

Like a scene out of a movie, so surreal, I walked beside her gurney...kissed her...and watched her wheeled away behind swinging doors.

And I cried. I couldn't speak.

I went to a window, looked up into the blue sky and prayed a Rosary and then a Divine Mercy Chaplet. I could pray. I told her I'd be the first face she saw when she woke up. In the space of a day or two, here I was again beside my only daughter waiting for her eyes to open and come back to me.

Despite how hard this was on my daughter...how adultifying it all was....how stressful it was for all who loved her...I thanked God. Over and over. She had something treatable. In a hospital of seriously sick children, she would eventually come home with me. There were examples everywhere that it could have been worse. I knew this was an opportunity to pray more...to trust Him more....

The PICC line gave her freedom to use her hands more easily. As the hospital caters to making this as pleasant an experience as possible for children, they brought her crafts, board games and toys to her room, gazillions of movies and their playroom was a bright spot visit in her day.

She had drawing competitions with her Daddy. She and my mother made rosaries and necklaces from their bead crafts. She beat me in air hockey.

More to remember...the overwhelming support of friends and family...messages on Facebook and email with promises of prayers and words of encouragement that kept me going during sleepless nights. I read them in the glow of my phone...Our Pastor who came carrying Christ on the morning of the 4th of July and blessed her...My mother, often by my side....the friend who came with a St. Philomena relic and blessed my dear girl. (In a surreal turn of events it is her son who now lays in a hospital bed with this same illness, please pray for him.) The friend and her young son who delighted my daughter with presents galore and flowers from their incredible garden...The cards and other presents and greetings at Sunday Mass from those God has blessed us with in our lives....so appreciated, so touching...

She squealed like Dorothy from the Wizard of Oz when her 3 brothers entered the room to visit. "Oh, I missed you the most of all!" (I'll leave you to guess who is the Scarecrow, the Tinman and the Cowardly Lion.)

Now, she is home and so improved. On the mend.

I am administering 4 items into her PICC line once a day and checking her site for infection. I'm gaining confidence with it, but it is nerve-wracking and I am grateful for the home healthcare nurse when she visits. The adrenaline I was running on has worn off...when I was washing the stuck on tape from her hands I felt the weight of it all....all she's been through and in the comfort of my home, I cried. And.... it is so good to be home....

There's no place like home.

http://www.livestrong.com/lyme-meningitis/

http://lymediseaseguide.org/lyme-disease-neck-pain

The incredible staff at Alfred I. Dupont Nemours is a treasure. Thank God for modern medicine in the treatment of Lyme's disease today. Please join me in praying for the children and the parents still in the hospital.

*Please, also, watch for ticks!