Hemophilia Awareness and politics

     In the last few weeks I have been learning the art of lobbying.  Meeting with political representatives and senators in Washington state in hopes that they will support the greater good of the hemophilia population.  National Hemophilia Awareness month just began and today my little bleeder baby and I went back to Olympia for important business.  We are hoping to convince those speaking for the people will protect people with bleeding disorders by keeping them exempt from the medicaid formulary.  Being exempt means they and their doctors will be able to choose what medication is best for them.  Without being exempt means the state would choose the drugs for them.  This would most likely be the cheapest and THIS would most likely mean plasma products.  The hemophilia community has a terrible history with plasma and plasma products.  The tainted blood of the 80's and 90's infected the population with HIV/AIDS.  We do not want a repeat.  We should get to choose.  So with the backing of Senator Jeanne Kohl-Welles, we are hoping to keep the choice with the people.  In the process, we are educating and bringing hemophilia awareness to the political arena.  We will be heard!

The Sweet Spot

   

     A few weeks ago I had trouble accessing my son's port.  He's had it for 2 years now and we've had relatively little problems.  The first day I hit metal and gave it another try.  By then Will was nervous and crying so we let it go.  The next prophy day came around and the same thing happened.  I hit metal.  I couldn't find the sweet spot.  Those of you with port experience know this spot.  It's the bulls eye soft center you pierce with the needle that tells you you're in.  After day 2 with no luck I was not about to throw the factor away again and I could see a nice hematoma growing under Will's skin so off to Childrens' Hospital we went.  We pretty much spent the day there trying to trouble shoot.  The first nurse seemed to hit the sweet spot but could not get a blood return.  At this point Nurse Barb showed up.  She's one of our "peeps."  We decided to get an x-ray.  In and out of radiology Will, my husband and I went, holding onto Will the whole time.  The results?  Everything seemed normal.  With the port still accessed we tried again but no blood return.  In fact whenever someone tried pushing the saline through Will cried and said it hurt.  This started making him nervous.  We'd been at the hospital a few hours and we were all getting a little antsy and hungry.  The friendly charge nurse, who is now in my circle of hospital "peeps", thought maybe it needed a flush, so we tried flushing with a little TPA.  It hurt when anything went in so we could only hope it was enough.  In the back of my head I kept thinking port replacement surgery.  This is the last thing I wanted.  2 years ago Will was only 18months.  There wasn't a whole lot to explain then or any prior experience so for Will it was an easy in and out sort of thing.  I was a wreck but all was well.  Now the thought of surgery on my almost 4 year old seemed to make me panic.  My perfect little boy already had one scar, did we really have to contemplate another?  Could I really find it in my mom bag of strength to explain the procedure to him in a way that wasn't scary?  That he'd be going off to a strange looking room with strange doctors who would be responsible for my child's life?  I just wanted to get through lunch and back to trouble shooting so we could go home.

An hour later we were back up in the exam room with a plan.  The next step was a contrast dye test.  Was there a leak or a crack or had the port simple come apart?  Hopefully this would give us the answer.  All I could do was take a deep breath.  I wished out loud for Will's nurse practitioner to be back from vacation. She was my sanity.  My solid rock.  My voice of reason.  She would tell me when to breathe and when to freak out.  The air came out of my chest just as the door open.  It was her!  I looked around the room and all my medical peeps were here!  It felt like being in the safe hads of other moms and friends.  Others who all wanted the best for my little lovey.  We could brainstorm together to keep him safe.  Out loud someone mentioned port replacement.  It was now out in the universe and I had to accept this option.  Keep your friends close but your enemies closer. I had to stay one step ahead of hemophilia.  I had my peeps around me and Will was counting on all of us.  We headed back to radiology. This time with out my husband.  He had to get home in time for the school bus dropping off my other son.  Then he had to get all my and Will's stuff packed for a night's stay at Childrens'.  Radiology brought Will's nervousness back.  Pushing the contrast through hurt.  They could barely get any in but it was enough to see that nothing was getting into the tube.  It was just pooling around underneath.  What the hell was going on?  No one knew and the only real way to find out was surgery. Ugh!  I questioned whether the port could be fixed or if a new one could go in the same place.  No one knew.  I just couldn't bear the thought of another scar on my baby's perfect skin!  It is an irrational feeling but it is there.  As the day continued we sat in the exam room waiting for the prep cart to come for blood work.  The charge nurse and I looked at each other and sighed.  She could see the concern in my face.  I was sure of it.  She looked at Will.  He was being so brave.  Asking questions, being polite, going willingly and trusting all of it.  "Let's try one more time."  She said.  I could only nod as I gave Will a big squeeze.  No magic cream this time but we had to do it.  This was our last try.  Will laid back and I held his hand.  He patiently let the nurse prep the area.  The poke caused him to cry but as he did he asked, "did she get the sweet spot, mom?"  We all watched as the red snake flashed in the tube.  We did it!  It worked!  We got the sweet spot Will.  As my bleeder baby and I walked out of the hospital that day I held his hand tight.  He smiled and made a funny little wink at me.  Such a brave little guy.  He's the true sweet spot.  Inside and out.

Hemophilia Camp

I recently spent 3 days at Camp I-Vy.  We have been making this journey for the last four years.  Our first experience was when Will was six months old and had only been diagnosed 2 months prior.  Everything about hemophilia for us at the time was new, scary, unknown and unexpected.  The nurse told us about Camp I-Vy and it was the best thing we ever did!  We had been living in a dark place before camp thinking our son would be stuck in a bubble.  We were in fear of injuries and the thought of him ever playing sports seemed impossible.  Then came camp.  We saw kids of all ages running and jumping and playing.  A person off the street would have thought it was your regular everyday sort of summer camp.  No one was sad or quiet or still.  Everyone was smiling and laughing.  We felt awkward in our feelings of doom and gloom.  We looked around feeling out of place in this outdoor world of happiness.  Fast forward four years.  I have been the parent program counselor for the last 2 years.  Welcoming and calming new parents greeting and getting reacquainted with past families and spending 3 days in a supportive group environment.  The boys LOVE camp.  Jack has friends and loves the day hikes, arts and crafts, health hut and camp fire.  Will plays with other kiddos in the daycare enjoying art projects, nature projects, bubbles and movies.  We have fun and are relaxed and feel right at home at camp among other kids and parents who get what we go through.  I've spent quite a bit of time reflecting on camp this year.  I noticed how Jack was very into the hemophilia side of camp this year.  As a young sibling without hemophilia he has such compassion for his brother and the other little ones.  Very alert and protective.  At the same time I noticed some sympathetic injuries coming from him as well.  Any scrape or drop of blood meant a trip to the health hut for a band aid.  Even near the end of camp a mysterious hurt arm meant I was pulled out of a session to take him down to the health hut for ice.  He's an unaffected kid who is looking to fit in at hemophilia camp.  He's figured out how to do it!  Go to the health hut!  Now my most memorable event this year DID happen at the health hut and it was the opposite of our experience 2 years ago when Will got an award for courage.  In fact, I don't even want to remember THAT time.  No, this year the health hut left us with a sweet and magical memory for our family and one other.  Our good friends have a little boy a half year younger than William.  He recently got a port to deal with his inhibitor.  It's been a hard road and still continues to be difficult for this little boy.  At camp in the health hut he and Will took their shirts off together.  We pointed out how they both had a matching port!  He looked at Will's port and back at his own trying to let it sink in.  We all cheered as his mom accessed his port and he got infused hoping this too might ease his fears.  He sat on his dad's lap to watch Will do the same procedure.  At first he fussed maybe thinking it was for him, then he just sat quiet realizing his friend with the same port was having his mom access and infuse him too!  Done in a matter of minutes we all cheered and the boys swapped favorite band-aids.  We all hiked up to the top of camp together to let the boys play on the grass and nothing prepared us to see our little friend Nikos run over and give Will a loving hug.  A best port hemo buddies hug.  I can't think about this moment without crying.  If I had to tell someone why I love Camp I-Vy, this moment is the reason.  It just doesn't get any better.

Just A Regular Boy

     With two more days of preschool left, my little hemo baby has reached another milestone.   Surviving his first year of preschool and ending it with a party at a roller skating rink.  Now, I know the old timers might laugh about these last two statements but as a mom raising a little one with hemophilia, every milestone can sometimes feel like climbing a mountain.  Last summer I was ready for my little guy to start preschool.  We had mastered the port and prophy so we were juiced up and ready to go. I sat down to fill out the preschool paperwork and looking at the medical and emergency contact information suddenly made my heart race and my hand shake.  Could I really put my bleeder baby's condition in someone else's hands?  Would they still treat him like any other kid?  Would they call me if he got hurt or they had questions?  Would they follow the directions on the medical file?  There were so many unknowns and for a person who has a need to be in control and who does NOT like surprises, it just all seemed overwhelming?  I took the boys to the park that day and thought about the hemophilia hurdles we'd already been through.  The bumps, the bruises, the ER trips, the hospital stays.  Each birthday and each developmental milestone got an extra high-five for keeping the kid alive.  This is just another one of those times.  All I could do was take a deep breath, face the fear and jump in.  Like diving into a cold pool, right?  The worst that can happen is he could get hurt, right?  The school would call and I could assess the situation.  Just like I would do at home.  I can do this.  You know what?  We did it!  And didn't once use that emergency factor at school either.  Another hurdle accomplished.  It wasn't the first and it won't be the last.  In fact a week before school got out there was a roller skating party.  When I told my husband I was taking both boys, he looked at me like I was crazy.  William too? he asked.  William too, I said.  All we can do is prepare the best we can and see what happens.  He's 3, how bad could it be?  We juiced up, slapped on a helmet and away he went.  You know what happened?  He had fun and I had fun and I even felt a little silly for being so nervous about it.  I can't make my bleeder baby's hemophilia go away, but I can control it.  I can take all the little steps needed to keep him as safe as possible.  It doesn't mean he won't get hurt sometimes and it doesn't mean I won't be nervous again when he starts YMCA soccer camp this summer. In fact a little piece of me is already freaking out about leaving him for 3 hours with strangers to play sports, but I want him to do what he loves to do and that is being a regular boy who skins his knees sometimes and does regular boy things.  I hope he never knows how nervous I get.  I hope all he sees is his mom smiling and waving and giving him a thumbs up as he runs off to kick that ball into the goal.

Today Is World Hemophilia Day

My Son William, age 3, has Severe Hemophilia.  Today I celebrate his life.

I want to share a website called www.MyGirlsBlood.org. If you go to anthology you can read stories written by women from all over the world with bleeding disorders. Some of these stories really put things into perspective for me. I don't ever want to fall into a victim role. We are extremely fortunate to live in the US where our children can live normal lives. Some of these women and others like them are just lucky to survive. They don't have SSDI or Make a Wish. In many cases they don't even have Factor. The goal of some of these women are to just stop bleeding long enough to finish school so they can provide for their brothers and sisters, mother and fathers. For me, World Hemophilia Day not only means awareness, but also means celebration. In a few hours I will be celebrating my little boy's life by watching him ride his big boy bike at the park. I don't need Make a Wish. My wish has already been granted.

Log books, birthdays and other advocating factors...

I don't need to state the obvious, but having a child with hemophilia makes life much more interesting.  It sometimes feels as if I'm in a weird human experiment in resilience or, at the very least, a wacky japanese game show I was never told about.  This blog is about what I learned in the last two weeks and how I'm pretty sure by the time my bleeder baby is grown we should both be honorary eagle scouts for our trials and tribulations.  Let's start with the black eye.  Of course this was inevitable to happen.  Five days before Will's birthday party.  The very first birthday party with friends, he accidentally launches himself, catapult style over the new sectional and into a window ledge. Catching himself with his nose, eye and forehead.  Somehow the universe knew this would happen since I had just infused a prophy dose and headed upstairs to throw out the trash.  The big bang theory means nothing to the hemo mom when from feet away she hears the big bonk and knows exactly, without seeing, what that sound means.  Will's forehead swelling before me and his eye worthy of a KO in the third round, I zip him upstairs for ice and another dose of factor all while dialing our hemo nurse.  I am again counting my kharma points, glad we are able to treat at home.  A week later it's well check day at the pediatricians and it's our lucky day, only one vaccine needs to be given!  Unfortunately that lucky shot turned into cellulitis, a serious bacterial infection.  Sunday morning we are shocked when his arm is almost twice it's size, red, and hot.  Since we had been infusing heavily it seemed very unlikely to be a bleed, plus he didn't seem to be in pain.  Off to childrens hospital we go and it's confirmed.  Cellulitis.  Let me stop here and tell you this.  Sunday was the DAY OF THE PARTY!  I had less than 4 hours to get in and out of the childrens ER on a bloody SUNDAY!  I was annoyed and angry at this evil bacteria invading my child's body.  I had enough to deal with.  I did not need this!  I soldiered through as a mother does and with 20 minutes before the party I tracked down the attending, asked for the meds and promised to give the first dose, but I needed to get my kid to his birthday party.  We made it within minutes.  Hooray! You cheer.  All is well!  Yes, and no.  The first couple of antibiotic doses went okay.  Then Will flat out refused to take it no matter how I tried.  With milk, with juice, in a smoothie.  By the 4th day I felt like Sybil's mom and I didn't think I could force it on him any more.  Then by the fifth day he had rashy cheeks and ended up with a high fever.  Back to the ER.  Blood work was done, fever was gone and we were home by 3am.  This is where my realization occured.  So much had gone on in the last 2 weeks that I was trying to keep up with it all.  I had to repeat everything to several nurses and doctors.  Although we were only in to check the fever, they still wanted to know about his arm and his bruised face.  So this is what I want to share.  For every child, hemo kid or not, keep a small notebook in your child medicine basket.  Like a vaccine log, or an infusion log, this log will help you keep track of medicine doses and injuries.  Did someone wake up with a fever at 1am and you gave 2 tylenol meltaways?  Did someone need ice or a bandaid and neosporin?  This is what any good nurse does anyway.  The second thing I concluded, and I can never say this enough and HAVE said it other times before.  You must advocate for your child.  You know them best!  Your mom superpowers will tell you if something is not right.  I knew the couch incident was not an issue.  he had his factor and acted fine and improvement was being made.  I knew his arm was not fine on day 2 but waited until day three b/c mdecial professionals would have chalked it off to "normal" vaccine reaction.  I knew he was not fine when, on day 4 of meds I had to sit on him and force him to drink the stuff.  I looked up adverse reactions and knew this is what was happening.  HIs red face and fever finally proved it.  I also know my child's limits.  I knew I could go those extra days before heading to the doc.  I also knew that Sunday we were going to make that party.  The important thing to remember is to speak up!  Do your research, get your facts.  Anyone can do this.  The internet has made that possible.  None of the doctors we saw wanted to pinpoint an allergic reaction, in fact the last one we saw wanted to discredit the cellulitis!  I know the facts. I know that I will take it a step further and have him allergy tested to be certain.  Medicine is not an exact science.  In many cases it is a doctor's best guess. (sorry my doctor buddies!)  while they are the professionals of medicine, you are the professional of your child.  Take notes, get facts, speak up, and ask questions.  Advocate.

Goodbye 2010 Hello 2011

What a year!!  Ups and downs and everything in between.  Kids are growing physically on the outside and I'm growing emotionally on the inside.  Having a baby/child with hemophilia can really test your internal emotional limits!  And just when you think you've got hemophilia by the horns, it bucks you off and lands you in the dirt!  This year was the Year of The Port.  For 11 months we had relatively little problems.  A couple of random trips to the hospital for fevers but that was about it!  We cruised along our prophylactic little way.  Infusing 2-3 times a week. I could access that sucker in under 8 minutes from set up to clean in semi darkness with no problem.  I'm awesome. Then September came along and I realized my little baby with a severe bleeding disorder was on his way to preschool.  I put on a happy face but was freaking out on the inside.  Would they know what to do?  What if he got hurt and no one told me?  What if they wouldn't let him play at recess?  This was another hurdle in 2010 that we climbed over and got through.  A couple of school highlights included questions about papercuts.  (he needs a bandaid like any one else.) How they handled the first time he wanted to do cutting work. (montessori-speak for using scissors) When he came home and said the teacher wouldn't let him go up the ladder.  (it was wet and slippery and too big.  He'd already slipped that day.) And the day he didn't want to go to recess.  (the teacher and I brainstormed.  Had he gotten hurt, had something happened?) No, he didn't like the green jacket I brought for him to wear!  Whew!  Then just as the year was coming to a close, William decided he did not want to infuse.  I started having to fight him and even bribe him.  I hated this!  I changed our infusion schedule to evenings so I could get help from my husband.  Even then it was challenging.  On Christmas day the port itself decided not to work.  Merry Christmas!  The only good I can say about this is we are forever grateful to everyone at Seattle Childrens Hospital who worked that day.  Not only were they happy to help but they let us use our already mixed and in a syringe Factor.  Who else would do that?  "Hi, I need to inject my kid with this syringe filled with clear liquid that is in a ziplock bag I pulled out of my purse."  My emotional armor was not up that day but everyone was quick to get us in and out of there.  William left with 2 new presents.
So that leaves New Year's.  After missing a nap and being a little wound up, William fell and a bruise almost as big as his thigh started forming.  It was my chance at a clean slate with that Port.  New attitude, new technique.  Got it accessed with no problem.  Take that hemophilia!  Bring it on 2011!