There was a time when I would be freaking out that my baby is playing with (and tasting) a sock (clean?) and a dog toy. But this is baby #2. And let me tell you, she is a challenge. You can't let her know that she has something that shouldn't go into her mouth or she will stuff it in and swallow it. Seriously. So I reassure myself that the dog has his shots and so does baby. And if I want to work and at some point eat lunch... sock and dog toy it is.
Hammer time.... LOL doesn't the title make u wanna jump around in parachute pants? Or am I showing my age cause I know about MC Hammer? Enjoy the video below... :D
Either way. Can't touch this is an imPORTant subject of mine. We have only had to take Caiden to the ER once to have blood cultures drawn from his port due to fever. It was a couple of years ago when we took him to Houston to a great Children's ER. Of course we were prepared that they would draw cultures from his port to rule out a port infection. What I was not prepared for was the nurse telling me that THEY had to access him, not me. She proceeded to tell me that it is a sterile procedure and that parents aren't allowed. Ummm , I'm pretty sure he belongs to me and that includes his port. I mean, I claim him on my taxes, I pay for his health care, and I am pretty sure I grew him in my belly. So then I should have access to any body part or implanted device in his body since I am his parent.
Karate chop!
At this point I had been a pediatric nurse for several years and I am well aware of how crazy parents can act when it comes to their kids. So, I took a deep breath and cut my eyes at my husband. He knew what was coming.
I respectively and calmly told the nurse "I understand that you have policies to go by but he is most comfortable when I access his port and it is already a sterile procedure so I will not contaminate your specimen. Once I get the needle in, you can draw all the labs you need to."
"I am sorry, that is just against our policy"
"I understand. Can I speak to your charge nurse?"
Oh yes I did.....
I have a side bar with my husband and he feels it necessary to tell me....
"you are THAT mom."
And all ghetto like I think "Oh no he didn't..."
But it's true. I was THAT parent. THAT parent I dreaded to have at work. THAT parent who didn't give a flip who they pissed off as long as they got what they needed. Although, in my defense, I was not intentionally trying to piss anyone off and I was very respectful. But STILL, he is my responsibility. His life is very important to me so I always want to make sure he gets the best care possible. This included his port so naturally I don't let most people touch it.
So, in walks the charge nurse, the ER nurse and some other nurse. I know that trick. Reinforcements. I calmly explain my side, she explains hers and then...we cannot agree.
Can't touch this...port.
I again exchange glances with my husband and I am pretty sure he is ready for me to give in but I won't. Not a chance. My smart ass personality and clever pediatric nurse skills devise a master plan.
"Ok, I understand you have things you can and can't do. But when you leave this room to get supplies...you will come back and find him accessed."
Oh yes I did.
I mean, they cant be held liable if I did it while they aren't there. And are they gonna pull the needle out and re-do it? Nope.
<insert evil laugh>
You gotta pick your battles folks. And when it comes to his port, I know I will do the best job possible taking care of it. I strive for perfection. No less. it's not that I don't trust the nurses. It's the fact that it saves him pain and distress if I do it myself. He can control that and have a say in his care and I am what he knows best.
That day I chose to be THAT mom. But you have to remember to be respectful and firm in your delivery. No one is gonna listen to the screamin' and cussin' mom saying get your filthy hands off my kids before I karate chop you into next week.
It's also important to know the chain of command in the hospital. If your nurse doesn't give you a reasonable solution to your concern then ask for the charge nurse. If that nurse doesn't offer a fair and safe solution then ask for the nurse administrator. That nurse usually gets the job done. Over and above that you can ask for patient relations. They are a department in the hospital that takes the side of the patient and helps all parties come to a safe and patient centered agreement.
Don't be afraid to be THAT mom. Sometimes its necessary.
Today was Donuts with Dad at Caiden's school. Their Kindergarten class had a whole program ready for them. Caiden was so excited and I know they really enjoyed their time together. I was at work when my husband texted me the following message:
"You know your son has hemophilia when he's looking at your arm and says 'wow, you got a lot of hair on your arms, oh and I see a vein, that would be a good one to stick"
Caiden just turned 6 this month. And he's right. Since I am a nurse, I have also observed the same thing. It never fails that we will be in church and I bounce my fingers on them. They are good veins son, very good indeed.
About 4 years ago I had a severe spiritual break down. I felt like God was really mean to me and especially Caiden and I was pissed that all of this happened. Before Caiden had his port, I began to doubt my salvation. I felt like there was a chance he could die and that any God who would take a child away from his parent sucks and can't be real. Certainly couldn't love me.
Shortly thereafter, I had a talk with our Pastor's wife and she really put things into perspective. She told me about a guy born without limbs.
Basically she was like...
"How do you know he is suffering?"
"Ummmm, I see him get stuck and hear his screams"
"Ok, apart from that. How do you know he is suffering?"
"I don't know. He has Hemophilia."
"Right, but that is all he knows. If it is all you know, is it really suffering?"
I don't completely agree with her philosophy but it really opened me up to the possibility that life didn't suck that bad for him. There will be times when it REALLY REALLY does but it doesn't define who he is. It doesn't dictate everything he does. Maybe it dictates every thing I do :) but not necessarily him.
To Caiden, it's perfectly normal to look at his dad's vein and see a pot of gold. To see the pipelines that provide easy access to a medication that promotes freedom. Did it make him sad? No. Did it make me sad? A little. But it also makes me realize how much he observes. How much he gets it.
It took me a really long time to figure out what I wanted to blog about. There's so many different issues that I'd like to raise awareness about but I only picked a few.
I wanted to explain what it is like to be a mother of a child with Hemophilia. A lot of times I try to put on a strong face and act like it's really not a big deal but sometimes it is. I think as a parent, you have all this craziness going on in your head and you really don't want to admit that you think it. It just seems a little creepy and over dramatic. But I think it's worth mentioning and talking about. I strongly feel that the mental health aspect of hemophilia is rarely addressed.
Every time the phone rings and it's my son's school, really bad things go through my mind. I wonder... did he fall down and break something or did he hit his head? I can't help but think the worst when really it's just he bled through the Band-Aid and they're replacing it. I absolutely love that they call me for everything. I think that's a very valuable aspect of his school. It's just every time their number comes up on my caller ID my stomach drops and I try to brace myself from what might be on the other line. Thank God it's always been nothing.
Or what about the time when he fell off the swing or the monkey bars and knocks the crap out of his head? Then I am patiently watching him without letting him know that I'm worried. Is he gonna throw up? Are his pupils equal?
See, when you have a hemophiliac, you must have really good assessment skills. Act like nothing is going on but keeping your eyes glued to him to make sure he doesn't start having signs of trouble. I can't count how many times I infused his port before bedtime and woke up trying to feel his head and make sure he didn't have a fever. Sometimes I feel like a port is a blessing and curse at the same time. Like a ticking time bomb.... what if a piece comes off.... becomes an embolus and goes to his brain or his lungs or into his heart. It could mean disaster. It could mean I loose my son. At the same time, the port allows us to have freedom and it allows his veins to rest so they aren't constantly being assaulted with needles. This may sound a little bit crazy but with hemophilia you always have to be prepared for the worst. But you can't let people know that because they're probably going to say "oh that's a little crazy" or "maybe you should give yourself a rest"...or my FAVORITE...."Why worry, you never know. You could cross the street and get hit by a bus." Well, you bet your ass I will have factor near to treat my kid if said bus crosses our path.
I think it's just good parenting. What's wrong with being really prepared for the worst and hoping that it never happens? So when it does, you have everything that you need and you have a plan in place.
If you haven't had time to watch the bad blood documentary I highly recommend that you do. Every time I hear of a factor recall my stomach drops and I feel really.... really... sick and wonder is this the time that my son is going to be infected with HIV or hepatitis or something else. Mad Cows disease...don't even go there. It's a reality. It happened to 10,000 men/boys with hemophilia. TEN THOUSAND. Remember Ryan White? I am sure you have heard of him. Bet you didn't know that he had Hemophilia and that's how he got HIV.
I never let my son know that these are the types of things I think about. I don't think it's appropriate for him to live his life in fear. That's my job. I'm the one, until he becomes an adult, that makes sure that we are as prepared as humanly possible.
I think another source of fear that's worth mentioning is insurance issues. We face a great burden maintaining medical insurance for our children. The medication he gets typically costs a dollar per unit. The dose is weight based so he gets about 1000 units per dose. Right now he's getting it three times a week minimum. That's $3000. What happens if I don't have insurance? I don't qualify for Medicaid and NO INSURANCE COMPANY WILL WRITE US A POLICY. I tried. I'm very blessed to work for one of the major children's hospitals in Houston, Texas. All of our care is very affordable and his ER visits or hospitalizations are payed at 100%. This is virtually unheard of. My fellow bruiser military moms who get TriCare....what a joke. You would think that the brave souls that put their lives on the line would get amazing insurance coverage for their families....but NO. That's only for elected official and secret service agents who, allegedly, use our tax dollars to buy Colombian hookers. Fan-freakin-tastic.
With all of this said, I am not trying to elicit sympathy or pity from you. I only want to invoke a deeper understanding of what it's like. I hope you take something away from this. I hope that it helps you to teach your children about bullying because you never know if you might be hurting a child with hemophilia. Remember to drive safely because you never know...the car next to you might be holding someone that bleeds to much. Or what about criticizing parents that have their children on Medicaid? It's not what any hemophiliac parent wants to do but honestly, if you have a child with special needs, you'll do whatever it takes. I encourage you not to pass judgment on me or my family and friends. I don't think you'll ever really know what it's like to be in my situation... until you are.
Although I would not trade another disease for Hemophilia, I do wish that he didn't have it. I wish there was a cure. I wish that this never had to happen. But because it did, I have some amazing friends and huge support from my family. Caiden takes comfort in the fact that his cousins have "chemo-philia" just like him.
I hope that one day technology will change and there will be a cure for hemophilia. The only thing I ask of you is to pray. Pray for a cure. As we "celebrate" world Hemophilia day, remember to pray often and pray hard. Pray that there's more affordable access to care for our children, parents, and older hemophiliacs to take care of themselves. Pray for a cure. Pray now.
When I first thought about names for this blog, I tried to think of something unique and silly. I rarely take myself seriously, so when I thought about the subject I would frequently blog about I thought Karate Chop Rockstar would do the trick. My previous post explained the Rockstar part but I've been kind of avoiding the karate chop portion since its kinda painful. So, I will start with the funny stuff first....
Ever go to the grocery store, put exactly 25 items in your basket and walk over to the special line for quick trip shoppers and see some ding-dong with 55 items checking out in front of you? Sounds petty but I specifically kept my list to 25 so I could get in and out quickly. The closer you look, you start to see 20 tooth brushes, 20 cans of hairspray, and 15 boxes of yellow cake mix. Yep. Extreme couponing....beep...beep...beep. Fifty five....FIFTY FIVE coupons scanned individually. Perfect. So, generally I am a nice and patient person so naturally I jump on Facebook and vent about it and I might even post a picture. Other than that, I sit quietly wondering what the heck you would do with 20 cans of hairspray. Aquanet no less...... maybe she is the personal assistant for the old cast of Dallas.
Beep...Beep...beep....
As my mind wonders, I start to think how great it would be to karate chop EVERY SINGLE ITEM off the conveyor belt and then give the lady a nice smile.
And so it began. Every time I was annoyed about something or had my feelings hurt but didn't have the courage to say anything, mentally I was a ninja... karate chopping my way to see justice prevail.
"Ma'am?"
"Yes?"
"Paper or plastic?"
Now to the hard part...
As you probably know, my son has Hemophilia. When he learned how to crawl, I really worried about him bleeding into his knee joints. The floor was so hard and I couldn't stand to think we might fight a joint bleed so young. I had met some other hemo moms and was given a website for some awesome pants with pads sewn into the knees. They were trendy and you would never know that the pads were in there. I bought a pair and he mostly wore them to church since the floor in the nursery had no padding.
I remember a single mom had joined the church and had a request for baby boy clothes. I thought about all the clothes Caiden had and was going to set some aside to donate. I was talking to one of my friends about donating his clothes and she said "I doubt they want pants with pads in them" she chuckled.
Sticks and stones may brake my bones....but mean words about my kids feel like a punch in the gut.
I remember leaving and crying. He only had one pair and he only wore them when absolutely necessary. He had a closet full of other clothes. It was one of the first times that I felt how truly different his life would be from other boys. How his bruises, medic alert bracelet, helmet, and padded pants would make him stick out so much. My heart ached and looking back I wish I could have karate chopped her. Taught her a lesson that it's not nice to say those things especially to a mom of a special needs kid. Karate chop!
All these years later, that lady is now one of my very good friends. I know that she never meant any harm by her words and still to this day I have never told her how I felt that day. She is an amazing person and I know her heart. She loves Caiden.
I also had a run in with one of the hemophilia treatment center nurses. She was a complete factor Nazi. I would call and say he needs more medicine and she would give me the third degree and doubt everything I reported to her. I can't even begin to count how many times I thought about how I would love to karate chop her. Seriously!?!?! I just LOVE paying out the waazoo for medicine that my son needs to save his life and I have nothing more to do than bug you to get another refill. Karate Chop!
So, there you have it. I hope you can take away something from this post. We all have days when we are too tired to fight the good fight and we decide to just take the abuse. But....always remember... even if it's just in your head... a good 'ol fashion Texas style karate chop never hurt anyone.
See, when you have a hemophiliac, you must have really good assessment skills. Act like nothing is going on but keeping your eyes glued to him to make sure he doesn't start having signs of trouble. I can't count how many times I infused his port before bedtime and woke up trying to feel his head and make sure he didn't have a fever. Sometimes I feel like a port is a blessing and curse at the same time. Like a ticking time bomb.... what if a piece comes off.... becomes an embolus and goes to his brain or his lungs or into his heart. It could mean disaster. It could mean I loose my son. At the same time, the port allows us to have freedom and it allows his veins to rest so they aren't constantly being assaulted with needles. This may sound a little bit crazy but with hemophilia you always have to be prepared for the worst. But you can't let people know that because they're probably going to say "oh that's a little crazy" or "maybe you should give yourself a rest"...or my FAVORITE...."Why worry, you never know. You could cross the street and get hit by a bus." Well, you bet your ass I will have factor near to treat my kid if said bus crosses our path. 
