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.

Thank you for asking

My "Christian" has been in the hospital for 17 days as of today.  It's been a long, extremely difficult haul this time.  Family and friends are constantly calling, texting, and "Facebooking" to check on him.  But today someone actually asked, "How is 'Lance' doing?"  My 17 year old Lance also has Severe Hemophilia and has been extremely blessed to not have complications.  But he struggles with the family through Christian's bleeds and hospitalizations.

My husband and I try to keep life as normal as possible for Lance by keeping his school and rehearsal schedule as unaffected as possible.  And for the most part it is uninterrupted. 

But what most 17 year old young men do not have to do is help hold their little brother down as his port is being accessed. 

Most 17 year old young men are not carrying their brother up and down the stairs because his little brother can't walk because of a bleed. 

And most 17 year olds are not nearly as compassionate as my Lance because when his little brother hurts, he hurts too.

Our children with chronic illnesses grow up at a different rate than most.  Maybe it's not obvious because they truly are goofy kids, but when it comes down to what matters most, they are heads and shoulders above most.

Thank you, for asking about my Lance.  He matters too.  Don't leave out the brothers and sisters, they are also on the journey.

Mama Bear...Part 2

The day was winding down, day 10 in the hospital, and who walked in the room?  The resident and her attending.  I was quite stunned to be honest.  The day before I spoke with the Patient Advocate for the hospital and explained what happened and wanted to make sure that my voice was heard and most importantly that another patient was not treated as poorly as we were.

The resident walked in and I could see that it was probably the hardest thing she had done to date.  I could see she was on the verge of tears.  She was very apologetic, never intended to come across the way she did and was almost beside herself that it had happened.  Of course, I accepted her apology, made sure I told her how she made me feel "dismissed" and that the "pain program" at the hospital did not meet our needs.  It was obvious that there is a component missing for patients like my son and the attending and I had some very good discussion.

I was gracious, but firm and ended with hugging each of them.  I can sometimes be a little too passionate for my own good.

The truth is (and I told her this) that I had absolutely no idea what her day had been like when she came in our room that day.  I knew she had many other patients and fires to put out but I made sure she understood that my main concern was my son.  That I would do anything in the world for him, that I would leave no stone unturned to find a way to ease his pain and help him improve.  And that despite her day, he was my ultimate concern.

Things on day 11 are improving.  And I am praying day 12 will bring better things.

Mama Bear

I really don't like to "stir up trouble."  It's not my nature, but when my children are involved I become a Mama Bear.

 

My "Christian" is having a very difficult hospital stay right now.  He has a terrible knee bleed that is causing him to not be able to extend his leg at all….and it's been in the same position for a week.  His pain has been crazy and we finally were able to get it pretty well under control.  His pain breaks through from time to time but overall it is much better than this time last week.

I asked the doctors to consult the pain management team here at the hospital to make sure there was not anything else we needed to be doing in regards to his pain.  I mean, why wouldn't the "pain management team" not be a good resource?  Right?

The pain management team consisted of an anesthesiologist who came down for a few minutes and said we needed to take my son off all of the meds he was getting continuously through his pump and leave him with the on demand dosing he would receive from pushing the button on his pump.

Are you kidding me?  That's your recommendation?  I was so stunned that I didn't know what to say.  Then when I asked how long she would be in the hospital to see if we could call her later so that my husband (who was on his way up) and I could talk to her together she said, "my consultation is now over."

Are you kidding me?  So basically she said she was done and wasn't coming back.

I asked our hematologist to come in and he said they would not be taking her recommendation and that it was not even close. 

 I cannot let this go.  This pain management doctor obviously has not a clue about hemophilia and the pain that a person can endure.  Her demeanor was not appropriate and she made me feel as if I was an inconvenience. 

I am reaching out to the hospital patient advocate in the morning as well as the head of the hematology/oncology department.  I have to do what I can to make sure I have tried to educate so that another person is not treated this way.