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.