I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

Blog Index

 

You are my 'son' shine 

my little 'son' shine;

you make me happy

when skies are grey

You'll never know dear,

how much I love you

please don't take

my 'son' shine away

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by Coby, age 11

Saturday
May072016

In a Pickle over a PICC Line

My son had a PICC line inserted for the first time ever. For me, this was a big ordeal. Yet, for the first time ever, I had not called in Dr. Google and I missed a few facts about it. Important facts, like that it required surgery. Ouch.

My son has been ill for a long time now. He's been in and out of high school this year, sometimes managing to go in for an hour or two, sometimes managing to sit with his school-sent tutor for an hour, and sometimes sleeping all day long. We have treated Lyme and co-infections with oral antibiotics (after a failed attempt at homeopathy which he refused to continue.) But joint pain, chronic fatigue, difficulty with concentration/processing remained, although he once again can read his way through every interesting book in the house. (By the way, his grandma made a big mistake; she thought he wasn't much of a reader and offered him $10 per book. A few weeks later, he advised her that she owed him a boatload of money.)

We hadn't yet tried IV antibiotics. PICC or port? Once I realized that my child would have to be anesthetized for a port line, I wanted the PICC. I didn't want my son completely put out--what about the MTHFR mutations? He preferred the PICC line and the hospital doctors decided it for us anyway.

On top of that, I didn't like the idea of a doctor opening up his chest. It reminded me too much of a doll that I received when I was 2 or 3. My own grandparents gave me Baby Boo, a state-of-the-art feeding, crying and peeing doll. She was such a great baby, complete with pacifier, and I might have loved her--had my parents not installed batteries. She had a door in her back, and an empty cavity inside her and this backdoor plus hole terrified me to no end. My mother stuck her high in a closet and I was then afraid to venture near the closet.

I didn't want my baby boy to turn into Baby Boo. 

After hours and days of phoning local hospitals, speaking with nurses in the Interventional Radiology departments, checking in with my insurance company, finding a visiting nurse/pharmacy company, a PICC line and intravenous antibiotics were approved. All was pre-certified and we could begin. I think I spent so much time making this happen that I forgot to ask exactly what would occur!

It went like this: after meeting the nurses and doctor, my husband and I sat for half an hour in the waiting room while my son lay on an operating table atop a lead apron ("To protect your future," said the nurse. "Your parents will explain."). The doctor, with use of X-ray, threaded a catheter through a vein into my son's arm, until the plastic tube reached near his heart. 

His heart? Oh boy. Breathe. We've got this.

It was a good experience for my son. He enjoyed watching whatever he could see and even moreso, got a kick out of the banter between the doctor and the nurses. "They seem like good friends," he told me after. "And I really like the doctor. He likes punk bands also." 

Later that afternoon, the first shipment of medications was delivered to our home. One box held a cooler with four plastic bottles of liquid antibiotics. The other box held a slew of supplies, from alcohol pads to surgical gloves to tubes of saline. 

At 8 PM, the visiting nurse came, which led to my greatest shock. Whereas I'd believed that she would come out the four days a week my son needed the infusions, she said she was going to teach us to do it ourselves. I had a minor freak-out where I silently texted friends as I fought through my own day's fatigue and the crawling brainfog to memorize everything the nurse advised us. My son, on the other hand, who has an interest in all things medical, remained calm and accepting. So, once again, my insides did not match my outsides, as I attempted to keep my cool. 

One day later, my son and I were old pros. We laid out the supplies--alcohol swab, saline flush, alcohol swab, antibiotics (which must be taken out of the fridge at least an hour prior,) alcohol swab, saline, cap. Success! And what was I ever worried about? It's not like I could see blood.

Then, the following day, my son suddenly complained of a horrible rash on both arms. It was after 5; our doctor was away and I was sure her partner wasn't around. I administered Benedryl and ran out for cream. Was he allergic to the antibiotic? Or to something else that we had done? Or could it be a Lyme rash? Ever since my 20s, I'd begun to believe that I was allergic to an ever-growing number of antibiotics because I tended to develop weird rashes after being on them. It was only in the last couple of years that I've realized that they were probably reactions to inadvertently treating Lyme (when treating a sinus or other infection.)

Our doctor's partner called within minutes and advised us to hold off on administering the antibiotics that night (and to give more benedryl if needed.) It was reassuring just to know that she was accessible. We had further reassurance when the itch/rash dissipated with the Benedryl. It has not come back (knock on wood.)

Last night, as I watched, my son conducted the entire infusion himself. Today, he wanted to show his friends. 

So there--the end of week 1 of IV antibiotics. It wasn't so bad after all. Praying these make all the difference and help my child be able to live a normal life again. 

I just hope that any future challenges don't involve my family members. We all need a medical vacation!

PrintView Printer Friendly Version

EmailEmail Article to Friend

Reader Comments

There are no comments for this journal entry. To create a new comment, use the form below.

PostPost a New Comment

Enter your information below to add a new comment.

My response is on my own website »
Author Email (optional):
Author URL (optional):
Post:
 
Some HTML allowed: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <code> <em> <i> <strike> <strong>
« Lyme in the Future: Opportunities for Careers | Main | Lyme Drunk »