When the Lights Go Out

Tonight my sweet "Christian" had some trouble with his infusion of factor and needed a dose of IV Benadryl.  Unfortunately he developed a pretty serious headache and was in quite a bit of pain, so he took some Tylenol and we turned off all of the lights and electronics in the room.

The only sounds were from the sterile water for the oxygen bubbling in the background.  And the only light was shining from the pump and monitor.

I didn't know how to help him with his pain but knew I needed to distract him so I started to talk about my trail riding adventures with my friend "M".  I told Christian about the skull of a dead animal we found, how the dog that accompanies us chases the rabbits and I went into detail about each of the horses at Ms. "M"'s corral.  He was engaged, asked questions and is looking forward to meeting the horses and feeding them carrots.

Nighttime can be scary.  It's when you watch the oxygen and heart rate numbers on the monitor as your child is sleeping and you wonder why the numbers fluctuate...your anxiety can consume you. 

Nighttime is also a time when your mind can wander and you start to think the worst...I mean the absolute worst.  You go places in your thoughts that you have no business going to and you work yourself up into thinking about the worst case scenarios for your child.  Then you lose sleep and feel yucky the next day.

Nighttime can also be a time when you get filled with questions and you want answers and you are not able to meet with the doctor until the next day. 

But what I am grateful for is that the morning will be coming.  Things will look fresh and hopefully we will be blessed with another day filled with continued healing and answered questions.

Most importantly we have the chance to see our child in a "new light" and we continue to do everything we can as caregivers to make sure that the most is made of each day in finding a solution to a bleed and provide some well needed relief...even if it's through a story.

Living with a Chronic Condition

When you live with a chronic condition you have to be hopeful and positive.  I find that if you don't try to find the positive despite your situation, things will always look bleak.  And when you have a child with a chronic condition you not only have to keep your chin up for yourself but for your child so that they will have the best attitude possible about their condition.

My "Christian" is not your typical child with hemophilia and an inhibitor.  To top it off he is allergic to factor VIII, the clotting factor he needs in his body.  His inhibitor levels are finally low enough to start Immune Tolerance Therapy (ITT), but because of the allergy situation, it is impossible to start ITT.  He has been living with this inhibitor for over 6 years and when he has a bleed it takes much longer to heal than a person with "just" hemophilia and no inhibitor.

We are in the hospital again for a bleed and not having a product that truly works for him is exhausting.  Here we go again with tons of pain meds to keep him comfortable.  Many days missed from school because we cannot control the pain and the bleed at home.  Cancelled appointments, missed days of work and an upheaval of routine for the entire family.

But this is one of those times I just want to crawl under the covers and cry...

....for the crazy, awful pain my son endures

....for the lack of a proven protocol (product) that will work for him.

....for the fact that he feels different than the other kids.

....for not having my mom to call.

Looking Back

When I look back at this picture knowing what I know now, it breaks my heart.  I couldn’t tell my "Christian" then what  I know now about how he would struggle and suffer with his hemophilia...that his journey would be filled with hospitals and pain.

Some people would even go so far as to say that I was irresponsible by bringing another child into the world with hemophilia...that I had my hands full with one child and another would be a mistake.

What I do know for sure is that my Christian is here on the planet for a reason.  He came to me ten years after his brother...ten years as I was an "older" mom.  His timing was perfect.  Actually it was God's timing.  Christian's struggles and pain are not without purpose.  He may be the next researcher to find a cure for cancer, or a Nobel Prize winner.  He could be a gifted teacher touching the lives of thousands of students or a musician writing music that touches peoples lives.  He could even be the example another young man with hemophilia needs to move on with their lives as they struggle in pain and wonder why they have been afflicted with this horrible disorder.

I have never doubted why my son is here.  What I struggle with is seeing his pain and not being able to take it away.  It destroys a part of me every time. 

 

But he is here to teach me how to love. 

No First Day of School Facebook Photo Today

We had such a nice breather...about 3 weeks without any bleeds.  It was great, while it lasted.  The thought actually went through my mind, "The first week of school is going to be great!"  School starts today and "Christian" is in the hospital :( 

This past Thursday evening Christian's knee started to bleed.  We treated aggressively and things were looking up until Saturday evening and his knee blew up.  Ugh.  The dosing of morphine I was able to give him was finally at the point of not working so off to the hospital we went.

He is doing much better and he may get to go home in a day or so, but I am not sure if he will make it to school this week.  And to top it off, Christian will miss all of the second week of school because he will be in appointments at National Jewish in Denver as they try to investigate the reason behind his allergy to Factor VIII.

I have worked on getting the appointments at National Jewish since May...we can't miss this opportunity.  If they can find out what the problem is, then it will be time well spent.  I just want my son to be able to take Factor VIII. 

I absolutely hate seeing him in pain.  Seven year old boys should be running and playing and it breaks my heart that he can't.  And when he is well enough to run and play, it seems to not last very long until the next bleed comes.

We have to keep hope alive and continue to pray that answers are found. 

Socks and Shoes

 

On June 30th, my "Christian" was running around playing….it was the last day he wore socks and shoes ...until today.  Today was the first day since the 30th that my sweet, 7 year old has put both socks and shoes on and did not need the wheelchair.

He's not 100%, but he is so much better.

When I suggested to Christian that we make a SONIC run, it almost took my breath away seeing him with his shoes on.  It completely caught me by surprise. 

When your child does not have a medical condition there are things you expect:

• That they run and play without pain.

• That they can walk in and out of stores when you run errands.

• That they never grace the halls of a hospital (and know so many people on a first name basis).

• And that your worries center around spelling homework, getting to piano lessons once a week and trying to decide which sports team to participate in for the season.

We all worry about our children.  Not that it does anyone any good.  Worry does not change the outcome of the situation, it does not make the days move along faster and it definitely does not contribute to our health. 

 

But today I am extremely thankful for the little things...the socks and the shoes. 

 

A Funky Season

I admit, I enjoy Facebook.  I'm more of a "lurker" than a "poster" but I do like keeping up with folks and seeing pictures of my friends children and grandchildren.  There was a picture that took my breath away yesterday.  One of our friends, who also has a 7 year old with hemophilia and inhibitors, posted his basketball picture.  He was so handsome and looked so happy.  He was down on one knee with the ball in the other hand with a big smile for the camera and I immediately thought, "My Christian can't do that."  Christian has an awful target right knee and honestly, it has not been good since early January.  He has one struggle after the other and is trying to heal from a new bleed in that knee that started on July 1st.  There are so many things that my son can do, it's just that sometimes I focus too much on what he can't do. 

I've had people tell me that I am positive and encouraging through our hemophilia/inhibitor journey, but sometimes I just don't feel like I am.

I feel selfish because I feel "trapped" at home when a bleed is happening….but I am blessed beyond measure because I can work from home.

• I get tired of having to haul the wheelchair in and out of the car and walk Christian to class on those days...but I am fortunate to have a wheelchair that is easy to use and the flexibility for my husband and I to be able to take him to school everyday.

• I hate that Christian must wear a brace to help alleviate his ankle issues (and look different)...but I am so thankful that my insurance allows for us to have a special orthotic created for him.

• I especially hate the fact that we must travel out of state for direction on Christian's treatment...and again, I am fortunate to have the resources to be able to get on a plane and get where he needs to be.

• I am sad that Christian can't start Immune Tolerance due to his allergy to Factor VIII...but at least it is now down to 10 from 2,200.

I am just in a funky season of seeing the really yucky stuff.  I pride myself in always working to find the good in every situation, but when your child suffers and you just want him to keep up with his friends sometimes the white flag is raised and you have to surrender….to the fact that the journey is just more difficult than most. 

But there is always hope.  I have to keep telling myself that there is always hope.

I Should Have Known

"Christian's" knee has been swollen since January.  Bleed after bleed early this year and it just never seems to get back to a "normal" size.  He has needed to depend on his wheelchair more than I have liked, but when his classroom is at one end of the school and the cafeteria at the other, his knee can't take the long distances.

He's just seven years old.

He is in summer school four days a week and has been in the wheelchair and today he wanted to not use it.  His knee looked better than it has in several weeks, so we let him walk.  I had a little twinge of doubt deep down in my gut, and I didn't listen.

And then the 891 exchange came up on my caller id...it was the school...Christian fell right on his knee.

Here we go again, infusing every 4 hours, Cryo Cuff, RICE…..we know the drill but it sure would be nice for him (and all of us) to get a break.

We just do what we know how to do.

So Incredibly Disappointing

Even since "Christian" was diagnosed with an inhibitor back in December of 2006, we have waited for the Bethesda units to drop low enough to start Immune Tolerance Therapy to eradicate the inhibitor. On March 8, 2013, we were going to finally start!

 

Our entire family was thrilled beyond belief that this day had come. Christian and I changed our travel (as we are in Denver for his HTC appointment) and were admitted to the Children's Hospital in Denver. Friday was the day. We knew that the possibility of a reaction was a concern so the doctor had Christian admitted mainly for observation.

 

The infusion of Advate caused a reaction. Christian began itching uncontrollably and broke out into hives on his upper body. So Advate was out of the question. Saturday would bring an infusion of Alphanate. This was going to work, I just knew it! I'd heard nothing but positive, did some homework and was ready for this to be the answer.

 

His reaction to the Alphanate was worse than the Advate. He broke out head to toe. It was a really severe reaction. He is feeling much better and we are being sent home Sunday (unfortunately we could only get a really late flight due to the weather in Denver) and will regroup with the HTC next week.

 

Nothing has been "easy" with Christian and his hemophilia. I guess I shouldn't be surprised that the road to getting rid of his inhibitor is going to be any different.

 

It's just more emotional and upsetting than I had ever imagined it would be. It's something I can't fix and want nothing more in the world than for my son to simply need Factor 8 to treat a bleed. The day will come...it's just going to be a while longer.

Posted with Blogsy

Another adventure

"Christian" returns to school tomorrow after yet another knee bleed.  He fell at school right after returning from a previous knee bleed and it started again.  He just never quite healed so we were cautious in sending him to school too early.  While we were in the hospital last week, I called the HTC in Denver and told them that we could just not wait until April for his next appointment.  Denver is our "second opinion treat our inhibitor" treatment center.

How many more bleeds would he have to endure if we waited?  This has been a very difficult time as it seems he is bleeding once a week to a week and a half.  We are treating each bleed aggressively with NovoSeven, but we need a plan.  An aggressive plan.  His inhibitor is down to 17 (hopefully its not crept up any higher) so maybe at this point Immune Tolerance is an option...I will consider just about anything because doing nothing is not working.

On Thursday we have an MRI followed by his appointment at the HTC and finally an appointment to be fit for a new brace….he has just grown out of his other one.

Flights are made, hotel and car are reserved and we will be off on another adventure.  An adventure that will hopefully help to make my son's life better. 

Everyone is Different

Several people in the bleeding disorder community don't understand why some people are hospitalized so often for bleeds.  "Why can't you treat the bleed at home?  Why do you go to the hospital so often?"  Honestly, those kind of comments make me doubt my instincts.  They upset me a bit.

Often times my "Christian", who is a frequent guest on the 6th floor at UNM Children's Hospital, has to be admitted for bleeds.  It's not just the bleed that is being treated, but the pain.  We cannot control the pain at home and the only way to give him relief is by IV Morphine that can be administered at the hospital. 

There is nothing worse than hearing your child scream in pain and not being able to help him.

If you were to look at him lying in bed playing the iPad, you would never know he was hurt.  But when you pull the covers down and look at his knee and you realize he has not moved positions on the bed for hours on end, you begin to understand.

People don't understand what our children go through.  They assume that if you can't "see" the condition, it really can't be all that bad.  A cancer patient who has lost their hair is a visual testimony to what they are battling.  The same for a person with a missing limb or someone with an oxygen tank by their side.

Truth is, I can't imagine what my son feels when he has a bleed.  It's a pain that takes him to a different place. Sometimes I think he is out of his mind for a brief few moments, and it is heartbreaking.

If it means coming to the hospital to treat bleeds and pain, then that's what we will do.

Everyone with a bleeding disorder is unique in how their bleeding disorder "shows up".  As a community, we need to remember that we are all different and sometimes what works for one person does not work for the other.  Let's continue to be passionate about the care we give and receive for our loves ones...and be passionate by reaching out and offering a lifeline of support to each other.

The Saga Continues

"Christian's" knee bleed is continuing to heal and his ankle starts to swell on Sunday afternoon.  He has been off his feet in a wheelchair and he has an ankle bleed.  Spontaneous bleeds seem to be our thing.

Dealing with a bleed is difficult, but when you have two going on simultaneously, it's a little scary.  When his right ankle bleeds we get extremely concerned.  This is a target joint and it often causes such great pain that he has to be hospitalized.

We infused 6 mgs of NovoSeven and called the HTC.  Our hematologist directed us to infuse 6 mgs. Every 4 hours until the morning...Yikes!  We'd never done that before and I was a little nervous.  After a few phone calls I felt a little more reassured that the dosing would be okay.

Christian slept through the night.  I could not believe it!  I was about to pack a bag and have it ready for when he started to scream in the middle of the night because I was so sure his pain would get unbearable, but the big doses of NovoSeven have helped to get this bleed under control.

We are now at 3 mgs every 4 hours.  His ankle is not burning hot and the swelling has gone down.

This is not a perfect situation, but boy am I grateful that we are still home, he is not in pain and we have what we need to treat.

I would say that I look forward to a "normal" week, but what does that really look like?

Back too Soon?

On Wednesday, January 30th, "Christian" woke up with swollen knee.  We went to get it checked out at the HTC and he was admitted to the hospital.  We were able to go home on Sunday, February 3rd with the understanding that we continued to keep him resting, with ice, compression and factor.  We sent him back to school on the 6th, in his wheelchair and on the evening of Friday, the 8th, his knee started to swell again.

I immediately thought "We should have kept him home a few more days."  I know, I know, I can't start looking back and doubting my decisions...but I always do.

All I want is for my son to live as normal a life as possible.  And this inhibitor almost seems to make it impossible sometimes.

The reality is overwhelming...this inhibitor may be here for many more years.  And if that is the case, it is my job as Christian's mom to keep his life moving forward despite his bleeding disorder.  One thing is for sure...our lives are never dull.

A New Target Joint

So much for "Christian" getting back to school after Christmas vacation...

He is having a pretty significant knee bleed. Just when we thought things were going well and we were looking forward to "schedule". And it looks like it is unofficially a new target joint...Right knee and right ankle.

What's hard to believe is that he is not in extreme pain. His knee is 2.5 centimeters larger than the unaffected knee. When his ankle bleeds his pain is uncontrollable.

I guess every joint is different in how pain manifests.

Q3 continues.....

 

Posted with Blogsy

Stepping Back

"Christian" has been doing well.  His ankle has recovered from the last bleed and he is running around being a typical six year old boy.

This afternoon, while at the harvest festival at church, Christian was playing with one of his friends.  As I sat back and watched, I realized how he has adjusted.  He runs as fast as he can with his brace to keep up doing little boy things, but you can really see how his ankle has endured damaged from repeated bleeds.  He has a funny little hop in his gait.  But it sure doesn't stop him.

It still just breaks my heart.

He doesn't know any different, but one day he will.

Inhibitor Summit - San Diego 2012

We just returned from the Inhibitor Summit in San Diego, California.  We had a great time :)  We made some new friends, heard a few very useful nuggets of information regarding hemophilia and inhibitors and even had an "ah-ha" moment regarding "Christian's bad ankle.  Arthritis maybe…..?  I have a long list of questions/comments to take to our next HTC visit in a couple of weeks.

"Christian" loved "hotel school" (the childcare program) and "Lance" was able to network with young men and women his own age and talk openly about hemophilia.

It was time well spent (and we even had some time to play).

If your family is affected, or ever has been affected, by an inhibitor, check out the Inhibitor Summits.  They are fantastic events.  I am already looking forward to next summer :)

More to come after our HTC visit....

Catching it Early

When I got the call from school that "Christian's" ankle was bothering him after recess, I immediately went and infused him.  It was the end of the day, so I brought him home early.  The HTC recommended dosing with Novo every 2 hours.  Normally, between me and the hubs, this would work, but hubby has been extremely sick.

Dosing every 2 hours alone makes for a very tired Mommy.

The next morning, I called the HTC and told them I would like for someone to take a looksie because I really did not want a repeat of the most awful bleed of all time from this past November.

We have been admitted, lots of NovoSeven and Christian is doing great!  We seemed to get ahead of this bleed and nipped it in the bud early.

We should be heading home in the morning :)

Big Improvements

It's so nice to see my "Christian" walking again.  He is turning in his ankle quite a bit and is moving pretty slow, but he is managing to get where he needs to go (but resting on his own as well).  He actually was able to put his tennis shoe on today!

It's the little things that mean a lot when healing from a bleed.

We go this week to Denver for a consult.  I am excited and nervous at the same time.  This has been a few months overdue.  I just hope we can get there without problems with the weather:)

Day Six

We are in day six of our hospital stay and there is finally a glimmer of hope.  "Christian" extended his leg almost completely!  His ankle is still swollen but it finally seems to be improving.  He is starting to eat but the continuous morphine is still running.  The doctor backed off on it a little bit last night and I am hoping tomorrow they will consider backing off some more.  This morphine causes crazy itching!  Christian is scratching himself and leaving marks on his little body.  He has been on a regular schedule of Vistaril to help alleviate the itching but I went out to Walgreens today and bought some Aveeno anti-itch cream.  It has worked beautifully!  Great stuff :)

This has been the worst bleed we have encountered.  Seeing your child in pain is heart breaking.  It was to the point where I did not think he would ever get any relief.  Feeling helpless is awful.  It's enough to take away your self esteem and begin to doubt what you know about caring for your child.

That's when you have to dig down deep and have faith.

A Doozie

This ankle bleed has been one of the worst yet.  "Christian" has been on morphine every two hours today and with the half life of the morphine being so short, his pain goes away for a very brief time then he is moaning in pain until his next dose.

I hate that I can't take his pain away.

The swelling is not going down as much as I would like to see.  This blasted inhibitor does not make these things any easier.  I think tomorrow we need to talk about trying a dose of FEIBA. 

I just can't miss the funeral on Wednesday...but things are not looking like my little guy will be able to travel.

A lot can happen overnight.  I am trying to stay positive.

I Knew it Was Worse

"Christian's" ankle has not been right. As he has been playing tee ball, it has been extremely obvious that he can't run like the other kids. It has just broken my heart. He doesn't seem bothered by it, but the truth is that he can't keep up.

I insisted on a new MRI and I am so glad I did.

He has joint damage from repeated bleeds into his right ankle, but the MRI showed significant change from his last MRI a year ago to the "talus" bone in his foot. Now we know why he has changed his gait and protects his foot.

The good news is that it can heal, the bad news is that tee ball and soccer are out of the question, at least for now. We have signed him up for swim lessons and hope that he loves it.

I almost ignored the problem and hoped it would just go away on its own. But deep down I knew it was something more. The doctor even admitted that he wasn't expecting anything to show up except a possible bleed, and was very surprised.

You have to go with your instinct. Sometimes it makes absolutely no sense, especially if a doctor is telling you otherwise. The "professionals" do not always have it right. When you are the parent of a child with a chronic condition, you are the ultimate expert! Don't forget that. Speak up! Be heard! Make a little noise if you have to!

The bottom line is that you are advocating for your child.

That is reason enough to be the squeaky wheel.