No fear

I was in the clinic today with my mighty warrior.  He is starting to transition from a recombinant Factor VIII to a plasma derivedFactor VIII.  He has been doing well for a couple of years with very little bleeding, but his inhibitor is still around and his half-life is not great.  What that means is that the factor we infuse into him does not last very long…less than 4 hours.  In order for his inhibitor to be tolerized, it would measure at 0 and his half-life would be greater than 6 hours.

This is a move that has showed good results for others, so we are going to give it a try.  It means I will be taking him to the hospital daily for two weeks for the infusion and observation.  He has a history of allergic reactions to Factor VIII, but since his very successful adherence to Xolair (an allergy drug), he has been great with his factor.  I am hoping that the Xolair did the trick and the new product will not cause any issues. 

Today we started at 250 mgs, tomorrow, 500, then 750….you get it….up to 5,000.

I was surprised at how exhausted I was when I got home this afternoon.  It's not that anything bad happened, I wasn't overly anxious about the treatment, but I think just being in that environment did a number on me today.  Caeleb and I played the Wii, were on our tablets, talking and joking…but in the background I kept hearing little ones screaming in their clinic rooms.  Another young boy was brought in to the observation area next to Caeleb and he was horribly sick.  Nurses fluttering in and out of rooms, parents looking very tired, the Childlife workers doing their best to help distract children from painful procedures….yes, that was our world for a very, very, long time.  But that is the norm for that part of the world and it brought a heaviness…a deep sadness over me without even realizing it.

I started to think about the times Caeleb was screaming while the nurses tried to find veins to access, or his port was not working well.  The hours and hours we spent in clinic as we gave time between one horrible attempt after another to access him.  And the times I would have to wait in the hallway because I was not able to help.  That was excruciating.

But today, despite the sadness and the flood of memories that came over me, I was watching my mighty warrior, standing up, playing the Wii while he was being observed.  His nurses and doctors came in with several saying, "Oh my goodness!  You are so tall!"...because he was always in a wheelchair.  And hearing him tell anyone who would listen that he infused all by himself again…oh, my…he was so proud.

My warrior has come a long, long, long way.  I'm not sure what this next part of his journey looks like, but that inhibitor can just bring it on! 

No fear here.

On the Verge....

For the past five weeks hemophilia has been the focus of our lives.  Yes, I have two sons with hemophilia and it is in our lives everyday, but when your son has an active bleed that will not get under control and you are in the hospital, it becomes your life.

My "Christian" was discharged yesterday after a lengthy stay, and to say we are joyous and full of thanks is an understatement.  But this evening he looked at me and said "my knee hurts."  My blood pressure went through the roof and my heart is still in my throat.  I jumped into action with a dose of pain meds, ice and elevation and his scheduled infusion is running as I am writing.  I called his doctor and he wanted to increase his factor a bit so that is what we are looking at for now.

When my son is recovering from a bleed it's like watching a pot of water and waiting for it to boil.  I know I can't live like that, but right now that is where I am .  I am making myself crazy!  My anxiety is taking over and I truly feel sick.  I just can't breathe.

I've been living with a bleeding disorder in my home for over 17 years and for the first time ever I feel like I can't go another step.  I know I have to….but it's how I feel. 

I don't want to melt down but I think for the first time I've understood how people do get to the point of breaking down. 

I'm embarrassed to feel this way.  I am a pastor's wife, have a ministry of my own, am a cheerleader in the corporate world for the team I work with and am known as an encourager and one who champions hope.

But the bottom line is...I am human.

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.

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. 

 

In An Instant

Wham!  Our lives can change in an instant.

• When the phone rings, the news on the other end could be a terminal diagnosis or a family member could have lost their life.

• You drive to the local grocery store to get a gallon of milk and be involved in an accident.

• You get a promotion at work and you are truly working at your full potential.

• You stop and help someone in need and your day never gets back on schedule.

• A little boy with hemophilia spontaneously starts to bleed and is bedridden and on pain medication for days on end...and mom and dad have to rearrange their worlds until he heals.

It can happen so fast with no explanation.

I often wonder why people have to suffer; especially children.  The only way I can make sense of it is to believe that when a child suffers they have an amazing purpose in this world.  It may be that they grow up to do amazing things; or if their life is short they are here to help pull those around them together and heal them in a way they never dreamed.

Maybe it sounds too simple.  But what I do know is that through my son's suffering, I have become a changed woman.  I am not the same person I was before he was born in January 2006. 

I just thought my son was just an answer to my prayer for having another child (after years of infertility).  I didn't know what God was doing at the time. 

I had no idea that his hemophilia would change me into a stronger more resilient woman.

• I know what it is like to hear my son scream in pain for hours on end with IV pain meds not working.

• I know what it is like to see my son not be able to "keep up" with his friends on the playground because his ankle and knee are in constant pain.

• I know what it is like to see people stare at my son because he is in a wheelchair and he "looks okay"...they have no idea that two of his joints are shot.

• I know all too well the horror in watching my son be overmedicated in the hospital and a team of clinicians surround him to wake him up.

• And I know the fear that races through my body when my son is heavily medicated and I stay up all night counting his breaths.

My heart has stopped more times than I can count with my little one, and the crazy part of it all is that I never knew I had it in me to love as intensely as I do.  It's almost too much to comprehend sometimes.  

I can't take his pain away because I would in an  instant.

What I can do is advocate for my children, always ask questions, demand "out of the box" thinking on treatments, and never give up on finding the treatment that works best.

Hemophilia is awful...but it is part of our lives.  We do what we have to do to the best of our ability. 

I'll never give up.

A Lesson Learned

Living with a bleeding disorder in this day and age, for the most part, can be managed well...if you plan well.  Bleeds never happen at a "good" time and last Friday was a perfect example.

"Christian" has been doing so well with no big bleeds and his knee (target joint) looks better than it has since January.  We traveled to Clovis, New Mexico to attend the New Mexico Annual Conference of the United Methodist Church's ordination service.  My husband was being ordained.  It is a moment we have worked together for as a family for several years and the time was here! 

We arrived Thursday evening and as he was going to bed Christian said, "My knee feels funny."  I infused an extra dose and tried to ignore what I knew deep down was a sign.  By noon on Friday, his knee was huge and I did not take enough factor to treat an acute bleed.   And I did not bring his pain medicine! 

At 5 pm I took him to the emergency room to get help with pain, we left and went to the service.  Before the service was over I had to leave and go back to the emergency room because his pain was crazy out of control.  And the hospital in Clovis only had 4 mgs of Novo Seven.

My husband was tied up and I was on my own and let me tell you something, if the mental beating up I was doing to myself could be seen, I would be black and blue.

"What was I thinking?  I have a child with a severe inhibitor and I am four hours from home (with nothing in between)!"  I even called my homecare to see if we could get factor on a plane and it did not work out.  It would have made more sense to go home.

Fortunately the ER was able to get his pain under control, gave me liquid morphine to take with me and I rationed out the last 4 mgs of Novo Seven that I had until the morning. 

Friday night was one of the most stressful and most glorious nights I've ever experienced.  My husband fulfilled his dream of becoming an ordained minister in the United Methodist Church and I was caught unprepared with my son and I could not take his pain away.

I know, without a shadow of a doubt, that I will never leave home unprepared again.  I will plan for the worst and hope for the best. 

So many people around me tried the best they could to help us out and knowing they were there made all the difference in the world.

I felt completely defeated, broken, irresponsible….the list goes on.  But what I do know is that I would do anything in the world for my children and if going through this experience has taught me a lesson and all is well today, then I am a blessed woman.

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.

Ugh!

Don’t you just love when you put your child with a bleeding disorder to bed and you’re thinking how grateful you are for an uneventful day?  Then when he wakes up the next morning and he can’t walk because his knee is blown up.

Yes, this is life with hemophilia and an inhibitor.  You just never know what is going to trigger a bleed.  I love when my healthcare provider asks me “Was he doing anything to cause the bleed?”  95% of the time all I can say is “He is just being “Christian” J

So many times I wish there was a reason for a bleed.  If I had seen my son fall, or bump into something…that would explain it and I would halfway expect something to happen.  One thing is for sure…I listen to my son.  He always knows when a bleed is starting.  Sometimes it takes quite a while for the bleed to become evident and other times the affected area just blows up.

You would think that a “seasoned “ hemophilia parent like myself would get used to hospitalizations, bleeds, infusing every 3 hours, doctor’s visits, and blood draws.  But the reality is that you can never be completely emotionally ready to see your child struggle. 

A 7 year old shouldn’t have to rely on a walker or a wheelchair or have to miss tons of school.  But that is part of our reality with hemophilia and an inhibitor.

I’m just grateful for my son, just the way he is, struggles and all.

The Most Awful Night

Wednesday night was one of the worst nights of my life.  My "Christian" came into the hospital due to an ankle bleed on Tuesday.  We could not control his pain at home.  His ankle bleeds are notoriously painful….just off the charts. 

 

A morphine pump had to be used and he could just get comfortable.  His pain was unbearable.  Long story short, it was too much.  He got into the kind of deep sleep that children going into surgery get into.  He would not wake up.  I kept rubbing his legs and arms and kept wiping his face with a wet cloth.  I was out of my mind!  The room was filled with doctors and nurses working to get him to wake up and they gave him medicine to reverse the morphine.  It was so painful to watch him come off the morphine. 

 

For a moment, which seemed like an eternity, I thought he would not wake up.  What would I do if he did not wake up?  It was the worst feeling of my life.

 

You think you know what hemophilia is all about.  The bleeds, the infusing, talking to the school nurse constantly, having boxes and boxes of supplies...enough to open a small pharmacy...and you get so enveloped into the hemophilia that you don't think that something else could happen.

 

Years ago some friends of ours, with a 2 year old son who had severe hemophilia, died from choking.  Choking.  Their lives were so immersed into the bleeding disorder that nothing else ever crossed their minds and it was devastating.

 

I'm not saying we should worry about living, but when you have a wake up call like I did, it reminds you to not take things for granted.  Build Legos, snuggle and watch a movies, take their hand and follow them to their room to play.

 

We never know when our last day will be, so let's make the most of each and every moment.

Pain

My "Christian" has been in the hospital since Tuesday and in huge amounts of pain. He has been screaming in pain "My ankle, my ankle!" He's now on a pump with continuous morphine flowing and he still cries out in pain. The measurement of his ankle has gone up instead of down and I am extremely concerned. We are waiting on his inhibitor results to come back in and I am at a loss. I don't even know what to think. 4 mgs of Novoseven are being infused every two hours. I was hoping to see things at least stabilize by now.

Fortunately many people do not know what it is like to see their child in extreme physical pain. Even when it happens time after time it's something that does not get easier. You never get used to the painful screams, seeing your child constantly scratching themselves raw from the pain meds, the anxiety that develops when they have topped out at the amount of pain meds they can receive...monitors, oxygen....it's just not convenient when you are a six year old.



 

A Knee on the Mend

"Christian's" right knee is finally on the mend :)  He is moving it around without crying in pain and can straighten it more that it had been previously.

I hate when my son has to be confined to bed.  You do everything you can to help them pass the time, and when they don't even try to get out of bed, you know they are hurting.  I am hoping he gets discharged over the weekend and back to school on Monday (probably with the wheelchair).

Measuring the knee has really helped us monitor the progress of the bleed.  One of our nurses even measured his "muscles" which have been recorded on the board as "huge" and "enormous"!  The nurses here at the University of New Mexico are just fantastic!

Hoping to be home soon.......

Familiarity

My "Christian" and I are in the infusion suite gettin an infusion of IVIG.  Hie immune system needed a little boost, so we will be out in a few hours.  As Christan says, "easy peasy lemon squeezie".

I really feel like the brace we had made in Denver has made a huge difference for Christian.  So far, no ankle bleeds.  I really think it's giving him the support he needs to keep everything in the right place.

Daily infusions are going well, but he is a bit bruised up right now. 

Things are going well.

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 :)

Day Eight

"Christian" had a really good yesterday.  He was able to take a good bath (he was getting really ripe) played with his trucks (surrounded by them in his bed) and ate fairly well.  The big news is that he pooped!  Whoo Hoo!   Now, if we can only get him to put a little pressure on his foot…

Today he will be off the continuous infusion of morphine and move to oral morphine.  The only problem last night was that his oxygen dipped down into the 70's so they put his nasal cannula back on.  The hope is that he is discharged Monday or Tuesday.

I am so glad we received our Cryo-Cuff!  Our homecare sent one to us, here at the hospital, and I am putting it on him regularly to help speed along this last part of his recovery.  It's a great device to have on hand.  Talk to your homecare about obtaining one.  Insurance may pay for it, but if not, it is well worth the investment.

The best part of today is that his dad and brother will be here later!  We have missed them terribly.

The waiting, and healing, continues...

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.

Still Here

We are still in the hospital.  "Christian's" ankle bleed is not resolved and he is still in a great deal of pain.  He is on a continuous infusion of morphine and a 3 mg dose of NovoSeven every three hours.  He's only had three bites of cereal (very early this morning) in a few days.

I am really worried about him.  He even has oxygen running by his face because his oxygen levels tend to go down on the morphine. 

I am taking "Lance" to the airport this morning so that he can be with our family for his grandmother's viewing and funeral.  I have to make sure Christian is healing.  That is what my mother-in-law would have insisted I do.