Fighting for my mother’s life..

The last few days have been indeed difficult.  I have managed to keep my mother in the dark about the truth of how sick she really is.  The problem is that she feels absolutely normal.  She looks just fine.  But she is on the edge of death.  To make things worse, the doctors have zero idea what the problem is truly.

My mother is no longer making her own platelets.  She is destroying any that are given to her.  They replaced her blood with new blood, and in one day she chewed through over half the platelets that were given to her.  The original diagnosis of ITP is no longer valid.  She has not responded to any of the treatment.  She now has issues with her bone marrow and that too is sick.  So, we are talking that it is either an auto immune problem, or a viral infection of some type that is really rare and isn’t showing up on the normal tests.

Problem is that the doctors have not been very good at communicating with me.  I hadn’t been able to speak to anyone in 3 days.  Her platelets had gone down all the way under 2,000.  (That is near death for all of you who don’t know).  There was no one available to speak to me.  I left message after message.  Nada.

Finally yesterday, my brother Larry went down there for me and made it happen.  He is very big and mean looking and made sure that he spoke to the right people.  Magically her doctor appeared.  I was able to speak to her on the phone.  I told her of my dissatisfaction with the situation and discussed moving her to another facility.  I’m giving this doctor one last chance. 

We are starting my mother on a type of chemotherapy today.  I agreed to it, because basically I came up with this idea over a week and a half ago.  Hopefully it will do what the steroids couldn’t with very little side effects.  It isn’t the traditional type with hair loss etc.  We are also getting a second opinion consult today.

Its difficult because my specialty is not hematology (medicine of the blood).  I am a neurology girl.  So I’m having to guess alot on stuff.  I don’t like not knowing.  I’m having to swat up quick.  I hate it that the doctor treats me like I’m retarded.  Its frustrating.

My mother realised only yesterday things are serious, but she doesn’t realise still how her life hangs in balance.  I guess I couldn’t keep her in the dark forever.  But it was nice that she was thinking that she was going to get out of the hospital in a few days and just live her life.  Her spirits were really high.  I hope by seeing her loved ones for “Mother’s Day” this weekend she feels loved.

I am leaving all of this in God’s hands.  He has a plan.  I have faith.