I am always prepared for a bleed. I keep a stock of medical supplies, a hospital bag in the car and I make sure everyone around us knows about Anthony’s condition and what it could mean for him should something bad happen. What I am not prepared for is something non hemophilia related to happen.
Michael has surgery 3 weeks ago to move his…’boys’ ….into the correct location. Recovery went great, Michael was a champ and our follow-up went without a hitch, that is until last night. He has developed an abscess both on his upper thigh and underneath the incision. OMG What do I do! Hospital? That seems a bit rash… Pediatrician? Its Friday I don’t know how much they can really do for him…I guess both?
And so we load up, Anthony at school, and head to the pcp, who in turn sends us to the ER. At the ER they call the surgeon who did the procedure and debate a course of action.
Geeze, men and their territory. They decide that Michael shouldn’t be opened up in both places but rather just on his thigh, wouldn’t want to open up old wounds so to speak. Now I have a baby with antibiotics, another incision on his body, and a whole new list of things to do if things go horribly wrong..did I mention I started a new job last week and have to work tonight? My god being a mom is busy work sometimes.
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.
Waiting for his knock out medicine.
Michael had a minor operation on Monday. Basically his testicles didn’t descend into the sac and they moved them into the proper position. No big deal. In fact, I hear lots of boys have one or both testicles ectopic at birth. In the past 4 days he has been a joy. That is, until he caught a head cold. Colds are something I can also handle, I mean it’s not like this is my first time handing out baby Tylenol and giving snuggles but Anthony has a cold also and my husband, Sam, has pretty serious tooth pain…at the same time. What does that mean for me? Load up on the coffee and plan my mommy day for about 2 weeks from now when everyone is back to normal. Don’t get me wrong Sam is helpful, in fact he stayed up with Michael until about 3am last night so I could get some sleep. Once he finally did get to bed though Anthony was up and wanting attention. Enter 4:14am grumpy mama. Oh you want juice? I’d like a full nights rest!! But I get him his juice, send him to the bathroom, check the fever and tuck him back in hoping everyone sleeps until 2pm the following day. Wishful thinking and it didn’t come true. Michael woke up in a very needy mood. I can only snuggle one of you at a time guys!
So I’ve decided that I’m going to do a bit of pre-planning in the future.
Mama’s need to be a little selfish sometimes. I have joined a virtual book club, nothing serious, just a book a month and I’m going to set aside at least 2 days a month to do something for me-alone. No cooking dinner, no giving baths, no driving anyone to anything, no working, no studying, just mama’s day to be Sarah. I don’t know what exactly I’ll do on those days; maybe sit in the library and read or go catch a movie. As important as our date nights are and as much as I love having a family day out somewhere everyone needs a moment to be alone. Taking care of myself makes me able to take care of my family and unless I really try to schedule that time I end up spending the day on the couch watching Thomas the Tank Engine between loads of laundry.
I’ve also been toying around with the idea of planning a meetup for us hemo moms. Outside of the events relating to our community. Maybe a halfway point where we can get the kids together and get to know each other besides over the internet. Now since I don’t have money for a serious vacation except once in a blue moon this will have to be limited to people in the Central/North Florida regions. Let me know what you guys think! As always you can reach me via email; email@example.com on facebook or on here.
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.
My First Aid Kit
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 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.
This week has been a rough one. Anthony had his second ever joint bleed. The first time was nearly 2 years ago and he bled into his ankle, no big deal 8 hour ER stay on Halloween and he was all fixed up. Sunday I picked him up from a cousin’s house and he was fine, playing, begging to stay. After the 2 hour drive however he was in tears and unable to move his arm completely. Forget about letting me touch it to measure or even check for bruising. After a lot of crying from him and some frustration from me I was able to get a look and see nothing. No bruises and it didn’t look swollen to me, but you can’t really tell these things without measuring. I spoke with a oncall hematologist about his arm and was told to ice it, give him acetaminophen and if he was still hurting in an hour and a half call back on my way to the ER. We were fine for the rest of the night after his pain reliever kicked in and I didn’t worry about it. The next morning however he was distraught again over his arm and unwilling to even bend it to get dressed. This time I spoke to a nurse on the phone, explained the situation and took measurements. Turned out that one elbow was a full inch and a half bigger than the other. definitely a joint bleed. And so began the phone calls. Do we take him to the doctor? Can we get a home health nurse to our house to infuse him? Do we need to go to the ER? From 9am until 3pm I waited while my health care professionals called each other, made arrangements and finally decided they couldn’t help me and that it was time to go to the ER. This was our 15th ER visit since Anthony was born for a factor infusion. I can’t believe that the numbers have gotten so high in just 3 years but there it is 15 infusions in the ER and probably more than that done in a clinic. Tuesday morning the phone calls began again. The measuring began again. The searching for a solution began again. ER? Home health nurse? Clinic? His elbows still had an inch and a half difference in size and he couldn’t bend his right arm and so he still needed factor again. At nearly 6pm on Tuesday night Anthony had his first infusion done in the home by a nurse. I haven’t seen him scream like that in a long time and I have certainly never earned that look of betrayal from him before. We came on to his home turf and violated his safe place with needles and medicine. He wanted nothing to do with me when we were done. I came to him, sat him on my lap, told him how proud I was to have such a strong and brave boy and he told me to “Leave me alone right now.” In those moments he looked a bit older. His seriousness, not the words he spoke, but the look of someone who is just tired of their lot in life was like a knife to the heart for me. And the nurse said to me, “Some homes I cry when I leave. This is not one. I won’t cry when I leave here today.” I cried though.
This morning we all loaded up and made the hour ride to our Hemophilia Treatment Center (HTC) to further discuss a plan of action for Anthony. Our doctor had clearly been back and forth with her superiors about our case because what we are requesting is not the ‘standard of care’. It is only with the knowledge we were able to show her that she completely agreed that our family is ready for prophylaxis before Anthony reaches the place in his life where a joint bleed is the norm. Here in Florida before a hemophiliac receives prophylaxis, which is basically treating hemophilia before a bleed occurs, they must be having joint bleeds somewhat regularly. Joint bleeds are exactly what they sound like, a bleed that occurs inside a joint causing the build up of scar tissue. You can imagine the incredible difficulty one would have maintaining mobility after something like that begins to happen. I decided a little while ago that any joint bleeding would later add to the normal issues that people with no disorders face and so I began the process of getting him put on prophylaxis before any issues. After 2 medical opinions and finally just switching HTCs altogether I found a doctor who is willing to hear me out and start him on prophylaxis once a week maybe more depending on blood work. We will be holding off on putting a port in his chest until we can be sure that A. He will be on prophylaxis for more than a couple of years or B. That his veins really can’t take the medicine and it isn’t just a lack of factor in his system causing them to blow. I am so happy that we are making these steps toward bettering his quality of life. Hopefully it will be a long time until we spend another holiday in the ER if ever again, though I must say Arnold Palmer gives our pretty good costumes on Halloween. =] It’s been a good week; first my birthday, now finding out that he is getting prophy and next week I’ll be celebrating my greatest accomplishment, Anthony’s birthday.