As you all know Anthony has a clotting disorder called hemophilia. Don’t be sucked into the myths though, each paper cut does not look like Texas Chainsaw Massacre, he just bleeds longer than your norm. I treat him like a normal little boy; he came with no bubble wrap for the random spurts of jumping off his bed to see if he can land on the dresser. >.< Recently he’s started thinking about what he wants to be when he grows up. For the most part these interests include becoming inanimate objects, such as; a train (a steamy not a diesel), a monster truck, a motor cycle..you get the picture. He also thinks he might enjoy being a firefighter. My response to this? Go for it! Would I prefer he were a doctor? Yes! But how could I ever tell someone they can’t follow their dreams ‘just because.’ Who am I to say he can’t be a firefighter? I figure this is all pretty simple, instead of stressing I’m just going to let him keep dreaming as long as he can and when he gets older either he’ll know his limits enough to stay away from something too dangerous for him or there will be a cure by then. And between now and then if he decides he’s going to play football in highschool I’ll go buy a foam finger and hope like any other mom he doesn’t break his arm.
I’ve been meaning to watch Bad Blood:A Cautionary Tale since it made its appearance on Netflix. Today I did. I am glad that I watched it….and I bawled my eyes out. Those poor people were being infected with HIV, AIDS and hepatitis through their factor. This medication that the world had waited for to make a better quality of life for hemophiliacs became our very own holocaust. The FDA, doctors, government, Red Cross, ect knew that there was a definite possibility the blood supply had been infected with AIDS and they continued to produce it. They were receiving the blood from not only blood banks that paid cash for donations in seedier parts of town but prisons as well. After cases began popping up around the country these masters of the world sat down and debated what to do with the tainted product and after many a debate they decided there wasn’t enough data to prove anything. Enough data? Lives were being lost! After all was said and done and enough proof pulled the factor off the shelves hemophiliacs began fighting for restitution from the American government that had failed them. It took 6 years for families to receive a ‘Compassion’ payment of $100,000. Compassion payment?!? Like they didn’t do anything wrong?!? Other countries put doctors in jail and Japan even made the men responsible bow down to mothers of infected children and apologize but here in America a compassion payment was sufficient. Did I mention we were sending AIDS around the world to give to other children? For shame. Lives senselessly lost over something as stupid as money. Not wanting to lose profits by pulling bad products off the shelves, or pay to check for infection in the blood they were harvesting from places like prisons. Human beings that could have been someone were snuffed out by this gross abuse of power.
Not only should people watch this because it is yet another piece of American history but they should know that something like this can and will happen again if we, the people of all nations, allow it to. Knowledge is power.
Pulmonary doctor this morning. Finally. The verdict is in. Anthony does not have asthma! A slight pollen allergy (but who doesn’t?) So happy that my Guy is getting all fixed up! He’s on a steroid and an allergy medication to get his cough under control. Hopefully now all our obstacles have been eliminated and he can have his teeth extracted.
Recently in my internet explorations I came acrossed a little boy named Eli who has suffered a brain bleed (my own personal worst nightmare). He received surgery and is now recovering. The most warming part of this story has been seeing the photo of his mama finally being able to hold him. Since reading about Eli I realized that brain bleeding isn’t something that I was really told about. Of course its been mentioned in passing and I’ve known that it could happen to my own little boy but I’ve never before taken the time to read about the signs and possible outcomes of a brain bleed.
- swelling of the head
- irregular breathing
- a headache suddenly followed by vomiting
- a lack of response.
I’m sure there are more symptoms but I didn’t happen to come acrossed them. Sometimes it takes a few days to see the signs of a brain bleed because there isn’t enough pressure on the brain to cause a noticeable problem. Your HTC can give you their procedure for a situation such as this but personally I would notify Anthony’s doctor while en route to our children’s hospital. Brain bleeding can be caused by a vaginal delivery during birthing, a fall, a traumatic head injury, and of course it can be spontaneous.
Most importantly, and I can’t stress this enough, if you want to know all the information on this do some research or ask someone who has a degree that qualifies them to talk about a medical condition…like your doctor.
Children should be wearing a helmet during activities such as but not limited to skateboarding, bike riding, roller blading, horseback riding. You get the point! Often times your local hemophilia foundation will help you get a helmet and pads for children who are still toddling to wear around the house during playtime. Should definitely get into contact with local chapter and ask about safety options for children.
We are families with children. We should be aware enough to make life safe for them. Theres a lot to learn but luckily we live in a time that has made the world smaller and information a whole lot easier to come by. Take advantage of the resources out there and let’s make these kids have the best childhood possible.
Get your girls tested! When I was little we all thought hemophilia hadn’t continued in the family, that is until a cousin was born with it. Still my mother felt like we were safe. Then I had a son with it. They tested Anthony TWICE before they were certain that he was severe factor 9 deficiency and yet they let Michael off the hook with only one test (which they weren’t able to get enough blood for as the prescription required) Be fierce! YOU are the parent, YOU are the customer. Within reason of course! You need to make sure that all the needs you have for you child are met. Have a question? Ask it. Have a concern? Voice it! You don’t have the luxury of being a quiet soul when it comes to medical care. My last bit of advice is to build a support system. EVEN IF YOU DON’T HAVE FAMILY! Get out there and bring people close to you. Sometimes you just need someone to help pick up that extra slack that a child, any child, brings.
Of course there can be complications of a brain bleed both long-term and short-term. I won’t pretend to know all of them. I do know that my own cousin suffered bleeding to the brain after a car accident (this led to us discovering his hemophilia) he now has limited short-term memory. I hear that after a brain bleed you are more likely to have more brain bleeds. I’m sure this varies per case but any questions should be directed to your HTC.
In Florida having supplies gets pretty important what with the hurricanes and all. Extra drinking water, batteries, ect. My first aid kit is bigger than the norm for obvious reasons. Call me over protective but having almost everything I need on hand may be the difference between treating a boo boo at home or making the hour drive to see our doctor. In a perfect world I could fit the entire kit into a super cool vintage-like first aid kit and mount it on the wall but in reality mine is too big and instead I’ve resorted to a 3 drawer plastic thingy. We keep on hand everything from bandages to butterfly needles as well as mini first aid kits in the car, my purse, and diaper bag. I think everyone should have at least the basics in their home for emergency use. After all kids will be kids and a trip to the pharmacy with a screaming child can be awfully taxing on anyone’s sanity.
Check out the link below to see what the Red Cross suggests you keep in your medicine cabinet. I’m pretty sure they sell kits too in case you are lacking.
http://www.redcross.org/services/hss/lifeline/fakit.html -Anatomy of a First Aid Kit, The Red Cross
I have been on a search for Hemophilia merchandise. You know the usual bumper sticker, T-shirts, coffee mug, key chains. Wouldn’t you know they do indeed have them out there but not from a hemophilia foundation. That, my friends, would mean that the money wouldn’t be going to a hemophilia foundation but rather to whatever company’s profits. I would have totally designed my own Hemophilia bumper sticker but I want the money to support research not whatever websites profit margin. Anywho, if anyone has any thoughts let me know. I’d really like to get the ball rolling on some awareness merchandise.
I am entirely certain that we won’t be seeing our nurse again. Yesterday I sat around waiting to hear from her about what time she would be arriving to do Anthony’s infusion, when she didn’t show I could only assume she would be showing up at the same time as the previous week, 6:30am. Of course that wasn’t the case and at around 9:30 I got a phone call from her saying, “We changed your time to Thursday, didn’t anyone tell you?” WTH?! That’s not how home care works, we are supposed to agree on a time not they change it and don’t tell me. What would have happened if I had plans to, you know, not be home! on Thursday? Then again this is the same woman who wanted to sedate my son before his infusions with Benedryl so what’s done is done I suppose. Today we had infusions done in the clinic and while he wasn’t happy about being there his natural fight or flight instincts didn’t kick in to quite the magnitude that they have been. He cried, he kicked a little, he did not however wrench his arm from my grasp causing the needle to dislodge and blood to pool up on him. The emla cream did help to numb him and he really didn’t feel a thing. He was just upset, which to me is entirely understandable given his last 2 experiences with prophylaxis. Here’s to hoping my little trooper has a better week next week. I am so happy that we are figuring this all out together and that I have the wonderful Miss Leslie to help me through it all. By the by the big boy we all know and love had his first day of “school”!!! He adores it and cannot wait to go back. Don’t know when it was that my guy got so grown up but I guess it’s time I got used to it.