Why, oh why, did I dare to say we would have a wonderful normal couple weeks until next clinic visit? Oh, I have angered the fever gods and they are teaching me a lesson! I taunted them, I should have know the second I hit "publish post" that they would be after us for that blatant disregard of the fact that we are constantly at their mercy.

It went like this:

Friday night, right when clinic closes, a low fever slithers in. Brinley starts complaining of an earache that progressively gets worse. I call oncology, and we agree it is viral since a cough had appeared that morning. She tells me to give her oxycodone, for pain and call in morning, maybe morning doc can call in a scrip to help us avoid the OUTRAGEOUS co-pays for ER and quick care.

Saturday morning: Fever sticks around, but stays low, ear pain is excruciating, oxycodone is not even touching it. Oncology says to try some eardrops we happened to already have, doesn't want to call in a prescription because it may be a viral ear infection, and antibiotics wouldn't do anything for it. I have no idea where this came from, nobody else in the house is sick and it came out of nowhere. I am concerned about the ear infection, but agree to try the drops. I secretly wish for our oncologist, who we are comfortable with, to be on call for us 24 hours a day, but I don't think she would be very happy about that...

All day Saturday, crying, inconsolable, we can't try tylenol because it would mask a fever, and if it gets any higher we are supposed to bring her in. Oxycodone makes her feel awful and just isn't relieving the pain.

Saturday night, she finally falls asleep for a few minutes, and David and I sneak off to a wedding reception for 20 minutes (Dennis & Dani hold down the fort for us). We get home, and around 8:30 or 9 her fever spikes and it's off to the ER. She was very sick, lethargic, her eyes were red and puffy, and I was nervous this time, so we both went and D & D stayed with the kids. They get her right in, yay! This might be a quick one! Well, now I've angered the ER gods who make sure each ER visit gets it's full 6 hour allotment. Nurse comes to access port, poke 1 is unsuccessful. Poke 2, also unsuccessful. On poke 2, big quiet tears rolling down her cheeks, Brinley tells me quietly, "I don't want to do this." My heart rips in two, and once again I am helpless. I secretly wish I could teleport oncology nurses to us, but I don't think they would be very happy with me either. I just have to throw in that our nurse was lovely, kind and sweet, I mean nothing against her whatsoever. I just needed someone who could access her port the way the oncology nurses do.

Nurse calls IV team to access port. By this time, EMLA cream (numbing cream) has worn off and there is not time to wait for another application, we need to administer the antibiotic quickly. Nurse and I agree on this, antibiotics are more important. Poke 3, Brinley screams harder, all 4 of us hold her down. Success, blood draws out. Time for heparin, oh no, it won't flush in. Since we JUST put bandage on, and moving things around aren't helping, we need to take bandage off. FYI, bandage removal is worse for Brinley than port access. Nurse starts to tear off bandage, mama bear tells her they need to find some adhesive removal before they remove that bandage. They are annoyed but find it. IV nurse is not very liberal with the application of the adhesive removal, and mom resists the urge to push her out of the way and do it myself. Thinking back, I think I might do just that next time. It doesn't HAVE to hurt if you just use a little patience. IV nurse starts moving needle around, Brinley is screaming at the top of her lungs "DADDY, IT'S HURTING ME!" Mom says it would be easier if they would just try reaccessing it, with 2 seconds of screaming, as opposed to moving needle around again and again. IV nurse complies, feels awful, deaccesses and finds a big clot of blood at the end of the needle. Poke 4 is successful.

We wait, and wait, and wait for antibiotic that should have been administered, since we didn't have time to reapply EMLA cream to port because of it's urgency. David asks nurse where antibiotic is, nurse says somehow it didn't get ordered from pharmacy, so we are waiting now. Oops. About 4 hours after walking through the doors, antibiotic is finally administered. Remember, it should be administered within 1 hour.

1:45 AM we get counts and they look great. I feel okay to go home now, so I start driving home. I get home, only to find out it is actually 3:15 instead of 2:15, thank you daylight savings gods. Thank you for stealing an hour of the teeny tiny sleep we will be getting. I have officially converted to the group of people who hate daylight savings. 4:15 AM, David and Brinley get home, I burst David's bubble right off the bat by telling him the actual time. Brinley wakes up a few times after that.

I made it to church, and taught my lesson at Sunday School. I love, love, love my class. I had promised treats, and showed up empty handed, but they all agreed I had a legitimate excuse. They make me laugh, and completely cheered me up. They are a great group of teenagers.

We were given the OK to administer Tylenol for the pain and fever for 24 hours and follow up with clinic Monday morning if she still has a fever, which as of bedtime tonight she did. The Tylenol has made a world of difference, she feels so much better than when she is taking oxycodone. She is still in pain, but not so groggy and miserable. I will ask for another alternative next time we are at clinic, which might be tomorrow.

Anyhow, I have learned my lesson, normal should not be in my vocabulary unless I am speaking past tense. I will never again predict a future normal. Let the fever gods hear it.....

disclaimer: I still love Primary Children's Hospital. Anything stated in this post is a direct result of lack of sleep and should not be taken out of context.


Stacy said...

Wow that really sucks. I am sorry to hear what a tough weekend it was for you guys. I hope her ear gets better soon. I always say hang in there - I hope that doesn't sound trite. You guys are doing great. Love ya.

Ali said...

Any type of multiple tries with needles is bad news. I have had my fair share of missed veins, etc. to know that Brinley should get a red flag everytime she goes in that reads "Only your best needle stickers need apply...I deserve it!"

Ashley said...

Never be ashamed of letting Mama Bear come out, the nurses will just have to deal.

Kat said...

Ugh HUGE Hugs to all of you! That sounds like a rough night/morning. I too am afraid of using the word normal.

Emily said...

What a weekend you've had... So sorry to hear about your trauma. It's just not fair. Any of it. We pray for you daily... We love you all!