Thursday, October 31, 2013

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.

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Monday, October 28, 2013

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.

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Monday, October 21, 2013

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.

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Wednesday, October 2, 2013

Guest Posting....Bullies

I am blogging over at the Hemophilia Federation of America today.

Stop by :)
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