Fever...strikes fear in the heart of every oncology patient in the world.
Why would a word like "fever" be such a bad word...
why would a FEVER frighten you?
Simple.
If a temp gets to a certain parameter (in our case 101.5) and you have a central line for therapies (like a Hickman or Port) you have to go to the hospital.
Even though its just a fever!
It's not like when the rest of us get a fever...you don't just rest and take some Tylenol...in fact, you do quite the opposite.
This particular fever started with Zach on Saturday. Immediately, we separated the boys in the hope of not transmitting Zach's germs to Braden.
No such luck.
A series of events kicks into play once Braden gets a fever. Braden's started this morning when I woke him up for school and I could instantly tell he had a low grade temp of around 100.
Momcologists become thermometers because that temp means in or out of the hospital...it means the difference between being discharged from the hospital after a stay or continuing to live at the hospital.
I can literally feel Braden's temple with my cheek and tell within a couple decimal points exactly what his temp is. We've lived this 24/7 for almost 6 years and I lived for years in the hospital laying right beside Braden feeling his head with my cheek every five minutes or so to check for the fever in hopes we could go home.
The best four letter in the world...HOME.
And as a result, I've become a thermometer. ;)
The first thing you do when you feel any warmth, is confirm it with a thermometer to see "the number". You hold your breath while that thing ticks away and then you take a deep breath while hoping it's less than 101.5.
This morning, it was 100.1.
WHEW!
Based on that number, I headed down the left side of the "Fever Action Plan Flow Chart" rather than the right side. The left side is a much shorter side because the right begins with call the hospital and tell them you are coming in.
There's actually one question to answer to decide which chart to even pick which chart to use..."is Brian in town or out of town".
If it's the "Brian Is In Town Chart", everything is going to be simpler. If it's the "Brian Is Out Of Town Chart", things are going to be much more complicated with me having to ask friends to help (which I am better at now, but still stink at it).
The very first thing I do is begin the "Fever Ward Off Procedures".
It's at the top of both flow charts...
in bold print.
Those procedures are not unlike waving a dead chicken in the wind while facing west...or whatever the voodoo/mojo deal is.. LOL!!
Step one, kiss him and say a prayer.
Step two, give him his First Tiger and Second Tiger so he can hold them and feel better.
Step three, get all the covers off of him and if he has on pants, take them off. No reason to have blankets and heavy pants to help heat him up (and it actually CAN make a difference).
Step four, stop snuggling tightly because your body heat doesn't help. You only have to do this until the fever goes down or it hits 101.5...at 101.5 it's already too late so just snuggle.
Step five, alert school and find a ride for Zach (so much easier if we are using the "Brian Is In Town Chart").
Step six, post on Facebook...
Seriously.
Get people sending positive thoughts and prayers.
It works!!
It really does!
Step seven, take a shower because it may be the last one you will be taking with warm water that actually comes out of the faucet at more than drip for several days in the event he is admitted to the hospital.
Step eight, begin packing procedures which I will describe in just a bit because it's pretty complicated. LOL!
Lastly, step nine...wait for the temp to do what it's going to do while praying and hoping it doesn't hit the magic number...important to keep the covers off and continue to pray.
Once it hits 101.5, we MUST go in to have cultures taken for each lumen of the central line because a bacteria could be growing in the line and that can be deadly. They can quickly go septic and die which is pretty scary.
If we are lucky, it's between the hours of 8:00 and 4:00, we can go to clinic and avoid the ER.
It we are not lucky, we have to face the dreaded ER.
Another reason to fear a fever.
The ER folks get us into a private room to wait our turn fairly quickly after check in so we are not exposed to everything else that is in the waiting room since our kids have a weakened immune system BUT it's not quick enough. I once had a lady behind me in line who kept hitting me in the back of the legs with the ER's wheelchair her son was in while he was throwing up violently into a bucket. I got that she was in a hurry but hitting me and exposing us all to the splattering wasn't helping it move faster.
And this was when Braden had no white blood cells. Every ER visit is a prime opportunity to pick up other fun illnesses. Like the lady in front of me one day who asked her son to say hi to Braden...he did and then very sweetly reached up and touched his leg to be reassuring and nice. It was very kind...
Then she told me her son had meningitis and they were back "again" because it kept flaring back up.
Awesome.
ER visits can make a bad situation, deadly.
I'm still trying to get two Haz-Mat suits to wear into the ER.
Not kidding.
When you get to the hospital, they access the central line. Okay...again this is where you pray for clinic and not ER. The ER staff is NOT used to accessing and probably received training on it "one time" but they don't do it routinely.
The shaking hands and instructions on the tray are the first clue they have...
no clue.
Bonus Tip #1...never allow a resident or nurse in training to access your child's port.
NEVER.
I won't even go into that story. Just don't do it.
SO...I refuse to allow the ER staff to access and ask them to find someone in the ER who has worked in oncology (there are some there) OR I ask them to call someone on the oncology floor to do it. Braden's a tricky access and I'm not going to let someone poke him 8 times to get it. This always ends up badly with hurt feelings on the part of the ER staff and I apologize and tell them it's not personal and that I'm just not nice.
Still, it still never ends well but I'm willing to have some "awkward time" in trade for less pain for Braden.
They draw the culture, and then we wait for a white blood cell count. If it's below a certain number and there are not enough white blood cells to fight infection, he begins a regimine of antibiotics while they bake the germs to see exactly which ones they are...then based on that, his drugs may change so it can address the specific type of bacteria in the line.
If his white blood cells are okay, we get a dose of IV antibiotics and then go home while they bake the cultures to see if a bacteria appears.
IF it does appear, they call you at any time night or day and you have to go inpatient for at least 48 hours.
If they don't call you are in the clear, but those 48 hours of baking bacteria makes you nervous and cringe every time the phone rings.
If the white blood cells are low we get admitted.
IF we are really lucky once admitted, we go home in 48 hours meaning the fever breaks and the antibiotics seem to be doing their job and we can do the remainder of the doses from home!
If we are NOT lucky and the fever continues, we stay put until it does stop. We've been inpatient for the full 14 days of doses many times.
Fevers can mean death. A major reason to be terrified. Braden has many severe antibiotic allergies so it's always a tough spot to try to find an antibiotic that will work for him, which is scary.
Oh and you cannot give any Tylenol until the cultures are drawn so they feel MISERABLE and you can't help.
And you can never give Motrin because it can cause them to bleed out with a central line. I actually had an ER doctor offer it to Braden once...I reminded her that was a bad idea. ;)
She said, "oh that's right...I forgot!"
Whoops!!
(that's certainly terrifying)
Then there's the packing. Not a terrifying reason but a big one to not enjoy fevers. Forget something when you are on the "Brian Is Out Of Town Flow Chart" and you are out of luck because you aren't going to get it for several days.
I used to always keep a suitcase packed and in the back of my car. I haven't had that in my car for a long time BUT I do have one packed and ready to go at all times in the closet because there's no time to throw things into a suitcase when you have to rush to the hospital for those cultures to be drawn.
When Zach was smaller, I used to even have a bag packed for him so the "lucky person" I was able to beg to keep him would be able to grab it for him.
Thankfully, he's old enough that he can now pack his own.
Well...he might forget his clothes and a toothbrush...but he would NEVER forget his i-Pod or Nerf Guns...
gotta get the important stuff first!! ;)
Then there's my backpack.
I always have a backpack filled with toys, books, snacks, IV line dressing covers, a ziploc baggie, and a change of clothes for both of us. I take it with us every place we go no matter what day.
(The change of clothes isn't for overnight...it's in the event of throwing up. So is the baggie. We learn from experience!)
That bag is ready all the time.
There are still two more bags which must come with us. First, Braden's backpack of tigers and blankets...he would cry the entire time without them. And his bag of electronics to entertain him (dvd player and iPad)...
or I would cry the entire time without them. ;)
It's good to have something to occupy the endless hours. Never depend on hospital electronics.
EVER! :)
Another reason to dislike fevers...they ALWAYS happen on a holiday or special event.
Tomorrow is school picture day.
He's been sick for pictures Every.Single.Year....
except for last year. We got lucky last year. The problem is that IF he misses pictures day tomorrow, we have to do retake day which isn't that big of a deal except we learned a long time ago to never expect tomorrow.
I don't know why I need those silly school pictures, but I do. It just makes me mad that cANCER and his cANCER hardware could stop them from happening.
I just want to see his sweet picture in the yearbook, Braden Hofen 3rd Grader.
Could be the last one.
His temp is down to 98.5 right now with no Tylenol having been given...
(told you posting for thoughts and prayers works) so I'm hopeful we can make pictures.
Braden's Army rocks!
TAKE THAT cANCER!
And the biggest reason we fear fevers is because it could mean the cancer is raging again. Fever is your body's way to build up warriors to kill foreign invaders inside the body. His is bumping up because he has a cold...the cold is obvious....
but...
it's the first place your head and heart go with a fever.
What if it's not just the cold?
What if his body is fighting more cancer cells too.
So for now, we wait, monitor the temp, hope it doesn't spike so we can stay on the left side of the "Fever Action Plan Flow Chart" and that he can do pictures tomorrow. No fever since 8:00 am so far.
Because his temp is down, we are sitting on the couch, snuggling with his favorite blankie watching Tom and Jerry while I type.
That's the good thing about fevers, I get to be with my baby all day long.
The BEST thing about fevers...he's still alive to HAVE a fever.
So even though it terrifies me, annoys me, we are blessed to have this stupid fever.
It's a strange thing to be grateful for...and it's crazy to have to be grateful for the smiler pile of crap but I am.
Please keep sending hope the fever stays quiet and we get to stop at the initial box on the flow chart...
Maybe someday....years from now he will have a "normal fever" without cANCER in his life, without a central line...just a missed day of school.
Now THAT would be a VERY happy day!!!
