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.

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. 

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.

Terror

"Christian" has been fighting his fear of needles.  But when you are seven years old, nothing seems to make it "okay" that needles must be part of your life.  We typically de-access his port on Saturday and access on Sunday evenings.  Last Sunday night he did a fantastic job!  But tonight was another story.

My husband and I take turns and tonight was my turn.  Christian just did not cooperate.  My husband had to take over because I just could not get the needle in place.  Christian's blood pressure was through the roof, tears rolling down the side of his face, and as I was holding his arms down to his sides I looked into his eyes and I saw sheer terror.

Terror.

I cant' believe I am using that word, but there is not another word to describe what I saw in his eyes.  I've seen it before and it breaks my heart.  I can't stop and get emotional about it...I just have to focus on the task at hand, which is to infuse.  To get that factor into his body.  To do what is best for him.

And the worst part of tonight, as my husband was pushing the factor into Christian's body, was hearing his little voice between sobs with his little chest heaving saying, " I hate….hemophilia."

Mommy does too.

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.

Caller ID

Remember when caller id was futuristic?  I remember thinking how cool it would be if you could see who was calling before you picked up the receiver and if I would ever be in a world where you could make a phone call and see the person while you spoke (Skype). 

Being able to see who is calling is the norm these days.  If I don't recognize the number 9 out of 10 times I will choose not to answer the phone.  And sometimes if I do know who is calling I still won't answer the phone :)  But some numbers make my heart race. 

When I see a certain "891" exchange, I know it is the elementary school.  I have a great relationship not just with "Christian's" teacher, but with the ladies in the front office and the clinic.  They all know that if they are in doubt about whether or not to give me a call regarding Christian that I would prefer them to call.  I would rather drop in to the clinic, check him out, infuse if necessary and send him back to class.

Fortunately I have a job that allows me the flexibility to run to the school when I need to.  My husband too.  Between the both of us we are able to check on Christian regularly and this has empowered the staff at his school to feel good about his care.

This week has been a crazy week in going back and forth to the school to check on Christian and give extra infusions.  We do what we have to so that he can stay in school.  We have a half day to go before he becomes a "big second grader" :)

You never know when that phone call is going to be a "little" something that you can treat with factor and a hug and a kiss, or if it is a "big" something that will change your entire day (or week) by needing to go to the treatment center or the hospital.

I hope that as school ends and summer approaches that we all get a little break from the running back and forth and get a chance to breathe.  The new school year will be here before you know it! 

Kites and Play Days

"Christian" finally made it to a field trip!  His class went to a local park to fly kites and have a picnic and he didn't have any issues.  I am so glad he made this trip since he missed the previous three.  The great thing about seven year olds is that they don't dwell too much on the past, they are into the "here and now."

But now I have to weigh whether or not Christian should attend "play day" tomorrow.  Bouncy house (yikes) and games.  His ankle is swollen and even if I send him in the wheelchair, I think it would not be in his best interest.

He misses another day and another event, but the beauty is that he is looking forward to Daddy being home from his trip and going to a birthday party this weekend.

I love my son's spirit.  He is resilient, tough as nails, and the sweetest, funniest kid you would ever meet.

It's been a heck of a journey with him, and I can't hardly wait to see what the future holds for him.  It's going to be pretty wonderful :)

The Playground

Last week I went to "Christian's" Spring BBQ at the elementary (where 1st graders eat lunch at 10:45 am) :)  I sat with him and his friends and enjoyed some great conversation followed by the playground.

The doors from the cafeteria opened and the kids raced off to the jungle gym and the ball courts.  But something was not able to happen...Christian could not run with them.  Even if he had not been in the wheelchair, he would not be able to keep up.  It took my breath away for a moment.  My son was not able to run and climb and enjoy his classmates.  I started to feel really sad and then Christian says "Come on Mom, let's go around the track!"  He excitedly takes me around the perimeter of the playground (his very familiar route) and keeping up with him was not as easy as I expected.

Something beautiful happened during that recess time.  Occasionally a friend of his would find him on the track and walk and talk with him.  Two really cute little girls came up and said "let's race", as they walked quickly beside him.  And then a little boy came up to him and started "dodging" him making Christian turn his wheelchair around in circles to find him...it was like hide and go seek :)

Those children included my son and expressed a love only a child can express to one another. 

The wheelchair was not in the way, they saw past it.  He was just their friend.

My eyes were opened that morning.  I have a deeper appreciation for what my little one has to accept. 

I will be with him every step of the way.

Embracing

Our family had a great vacation to Colorado.  My "Christian" did not have any bleeds, just a horrible cough, "Lance" had no issues and the most exciting part of the trip was that blizzard like weather hit in the middle of the week and we did not have heavy coats :) 

The main reason for the trip was to see our second opinion HTC regarding Christian's inhibitor.  Not great news as of now.  His level is down to 11.9 but the doctor is truly stumped.  Christian is allergic to the Factor 8.  The avenue we are investigating is "desensitizing" him to the factor.  This would mean an extended stay in the hospital (in Denver).  But there is too much we do not know (and the doctor agrees as he is reaching out to colleagues across the country).  It's a little too much to even think about right now. 

We are reaching out via social media to see if others have endured this type of complication and will be attending an Inhibitor Summit this July armed with questions.  We are planning on taking it slow and getting our ducks in a row.

And yes, today was our first day back to work and school and the elementary calls...Christian has twisted his "good" ankle.  In the wheelchair he goes and is home with a bleed.  And yet again, another field trip is tomorrow and it looks like we may not make it.

There are many things in this world that are worse than missing his third field trip of the year...Boston, a wreck on I-40 yesterday killing a 7 year old child, losing a job, losing a spouse....but it still hurts that there are times when my son has to step back. 

It all depends on how we, as parents react.

I just pray that he eventually embraces his bleeding disorder. 

I know that sounds strange, but we all need to embrace ourselves just as we are, don't you think?

Ready for a Break

We have been enjoying a little respite from the craziness "Christian's" inhibitor brings to our lives. His knee is doing much better, but is still swollen. I looked in his infusion log and the first knee bleed of the year started on January 5th....and it is still not healed.

 

His classroom is very far from the cafeteria, library and the front of the school, so he has been using his wheelchair (in the hallway). I hate depending on the wheelchair, but it sure has helped him. We are anxiously awaiting his new custom chair to arrive! It was a pretty penny, but I think it will be well worth the investment.

 

Our family is looking forward to Spring Break next week. We will be traveling to Denver for a follow up appointment at the HTC and are hoping to get a new plan of action for this inhibitor.

 

You just have to move a day at a time when you have the craziness of a chronic condition in the mix. It's so easy to get overwhelmed and find yourself worrying about what has not even happened. Be thankful for the calmness when it is present and enjoy the moments.

 

They just go by too fast.

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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.

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.

It Never Ends...

We are finally back to dosing "Christian" once a day.

Monday is coming and he will be back at school (with a wheelchair for a few days)!

He wakes up this morning with a lump over his eye...he fell out of bed and hit the nightstand...

It just doesn't end...you just have to laugh sometimes and count your blessings :)

 

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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.....

 

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Plans, plans

When you have a child with a bleeding disorder, making plans is almost funny.  It's as if you are tempting fate and asking for a bleed to happen.

We had planned on taking a few days to get away to Santa Fe (an hour away) to recharge and get ready for the New Year.  But as fate would have it, the day after Christmas, "Christian" developed a knee bleed.  Thankfully we caught it in a good amount of time and he did not endure a great deal of pain.

I am not one to let a bleeding disorder stop my son/our family from living, but sometimes you just need to "raise the white flag" and do what you need to do.

It's not about where you go or the money you spend in having fun, it's about the time you spend with your family.  Lasting memories are made at Disneyworld, but they are also made in the comfort of your home.

I pray that the year 2013 brings you and your family great peace and joy.

The Plan

Infusing is not going very well for my "Christian" right now.  He is fighting so hard because of his fear of needles and his father and I just cannot access him without help.  We have a plan in place.

We will be going to the HTC on Wednesday afternoons after school to have the nurse access him, while the Childlife Specialist works with him before the actual infusion.  Unfortunately it takes several people to hold him for the infusion, but there is no other way right now.  At least it takes his father and I out of the picture for a bit and our stress levels can go down as someone else is infusing Christian.

We also have an appointment scheduled for him Tuesday evening to see a therpist who specializes in play therapy.  I have no idea what to expect, but right now I will try anything.

Have you had any experience with play therapy?

In a matter of minutes....

This morning I went on the early school run and took "Lance" to school.  When I returned, my husband was sitting on the stairs, a pool of blood drops at his feet and Christian was in tears.  He tripped going up the stairs.  Yes, going up the stairs.

If the gash had been any larger, I think we would have been off to the hospital.

Things have been going so well for such a long time for my Christian and the minute I get complacent...something happens.

Just a little reminder that hemophilia is always with us...stumped toes and all.  It's amazing what can happen in just a few minutes.

He Doesn't Understand

My 15 year old, "Lance", has been very fortunate in his journey with Severe Hemophilia.  He has never had a joint bleed, and has really only had one severe muscle bleed….ever.  He had a low titer inhibitor, one port placed and was immune tolerized within 2 1/2 years.  The port never had an infection.  He had an appendectomy and came through without any problems.

A walk in the park compared to most.

That is why it is so hard to get him to understand the importance of infusing three times a week.  Last night he showed me an area on his upper thigh...a horrible bruise near his groin and it scared me.  That's when I went off on him about the importance of infusing.

 The problem (a good problem) for kids like Lance is that their treatment has been so good and so many bleeds have been avoided, that they do not know what it is truly like to have pain from a bleed (or maybe even know when a bleed is occurring).  Even though Lance has seen his little brother go through hours upon hours of severe pain from a bleed, it just does not register that it could happen to him.

 All I can continue to do, before he leaves the nest, is try to instill in him the importance of his treatment.  Once he is on his own, there is not much I will be able to do, but until then, I'll keep on hounding him about ordering his product and treating.