Saturday, Feb 3rd was hands down one of the hardest days of this mom's life. In the 21 months Dempsey has been in treatment for Very High Risk Pre-B Cell Acute Lymphoblastic Leukemia, we have kept him OUT of the hosptial. By God's grace, with continuous prayer support, holistic methods, and an concerted effort to avoid as many toxic/ synthetic substances Dempsey has been healthy and strong the whole time.
That changed slightly on Saturday. Dempsey ended up having a fever of 103. Now, the difference between your child and my leukemia child is that we have "protocol" that states we "must" go to the ER if Dempsey has a fever of 100.4 for longer than a hour or a fever over 101. Well, 103 is over 101. So, against my gut, I took him to CHOC's ER. What a petri dish!
He was given antibiotics BEFORE they even knew what he had! Turns out he has Influenza A. What good are antibiotics for a virus? The answer - none whatsoever.
He had labs drawn.
He was given fluids.
He was in a room for almost EIGHT HOURS.
The nurses tried to give him Tylenol. I refused. Tylenol is murder on your liver and his is already compromised. No thanks.
The nurses tried to give him Tamiflu. I refused. That crap is gnarly and, again, murder on the liver. No thanks.
I kept a cold compress on him and allowed him to sleep as much as he needed, which was a lot. He ate a NeoLife Bar and drank some NeoLife Shake. He kept drinking water as well and I "treated" him to some orange juice.
His fever hovered at 102.4.
It's strange. I'm not nearly as worried about a fever or the flu as every medical person we came in contact with, even with my cancer kid. It's like they have forgotten what defense mechanisms the body was built with and how they work. Dempsey had only had a fever since about 10am... a mere 4 hrs by the time we went to the ER. From the moment we got there they were trying to break his fever. Why? A fever is a good thing. His body has a virus and the fever is what will put the virus in its place or out of commission. The body needs a little time to do its job. I understand that Dempsey's immune system is being intentionally compromised by chemo... however, his labs have been perfect and he's been otherwise strong and healthy.
The doctors planned to admit Dempsey to the 5th floor. I refused. His labs were great! He had ZERO OTHER SYMPTOMS.
His ANC was 2,940! His platelets were 244! His Hgb was good. His bp was good. His liver enzymes are elevated, not dangerous, but higher than this momma wants them. No "medically necessary" reason to admit him other than observation... which means him staying accessed, people constantly coming into his room to draw labs or take vitals, other hospital activities that make sleeping difficult - and sleep is what he needed most, not to mention who knows what bugs the staff and other patients have brought in the doors. *shudder*
So, the admission? I refused. Then came all the repetition of all the bad, horrible, awful things that could happen to him if we left the hospital... coinfections, respiratory issues... even death. They forgot to mention that all of that could also happen if we stayed in the hospital. Last I checked, medical errors are still the 3rd leading cause of death. I'll take my chances thank you.
Man! The looks I got from all the medial staff. Enough to make you begin to doubt yourself.
It was scary, not gonna lie. I was shaking. I KNOW that I am a smart, educated, loving mother who knows MY CHILD, not to mention I have been helping him THRIVE through forced treatment. I know I have all the good things to care for Dempsey AT HOME. I know I have the right to refuse this admission, especially since it wasn't medically necessary. I was still
freaking out. It is HARD to go against the system. They make you feel like you're putting your child in danger, like you don't know what you're doing, like you are not smart, and a bunch of other self-questioning cues. That doesn't include the non-verbal messages they send. Plus, parents of kids in treatment have also had the conversation of basically "
do treatment or we'll get CPS involved"... so that's always a thought in the back of my mind.
I was texting cancer moms, nurse friends, friends, family... all for moral support and counsel. I am blessed to have a host of incredible people in my life! Thank you, Jesus!!! All the messages came back the same,
it's not necessary for him to stay - take him home.
After I refused the admission, that started a flurry of doctors trying to get me to reconsider. It even meant Dempsey's primary oncologist, who we've not spoken to in almost a year, called me to give me her two cents. She told me "I just worry about Dempsey." Um, thanks? I mean, you worry so much that we haven't heard from you in a year?! Get away from me. Until you can tell me you worry about MY CHILD with every breath you take, you have no ground to stand on with that comment.
I reluctantly agreed to a 2nd antibiotic being given to Dempsey. It felt like the path of least resistance. It shut the doctors up, maybe gave him a little extra support against potential invaders, and I know how to heal his gut and clear him of the drug. I JUST WANTED TO GET HIM HOME. This decision makes me feel weak but I have to give myself grace (so hard to do) because I've never been in this situation before. Now, however, I cannot say that! I have come and conquered this crazy expereince and I am more confident for the future!!
Regardless of my emotions, my baby went home!
He felt so good he told me, "Lets take the stairs... it will feel good to get some energy out." So, up three flights of stairs we went. Take that, people who wanted him admitted.
A few photos from Sunday...
THANK YOU FOR ALL YOUR PRAYERS AND OTHER METHODS OF SUPPORT!!
