Friday, September 20, 2013

Going down the unknown path again

This week has been a emotional roller coaster.  Sunday morning Jackson woke up complaining of a headache.  By evening time he was crying and falling in and out of sleep.  We finally got him to sleep Sunday night only to have him wake up twice screaming and crying in pain.  I got up and was going to take him to the ER when Mike got him back asleep and he stayed asleep. Monday morning he vomitied once.   So I took him to urgent care.  After waiting forever to be seen the doctor barely looked at him and said he has virus.  So we went and got some breakfast and then went home to rest since we didn't get much sleep the night before.  Later that afternoon Jackson started feeling better and was playing and acting normal.  By evening time he had fallen asleep on a chair and when he woke up he was crying again in pain.  We could not get him to settle or stop crying so I called the hospital and asked for a nurse to call me back.  A half an hour later nobody had called and Jackson was very sleepy and had vomited again.  Nurse finally called back and said to take him to ER.  So we went to ER.  They put in a iv to give him fluids and meds.  They then took blood work and did a CT scan.  White blood cell came back a little high and the ER doctor had told me the CT scan was good.  So after the fluids we were discharged.  We didn't get home until midnight so I decided Jackson would stay home from school again the next day to rest.  Tuesday morning he woke up feeling much better.  In the morning I got a voicemail from a different ER doctor saying that the doctor from the night before was wrong when he said the CT scan was fine and that the radiologist read it Tuesday morning and that there was a abnormal spot on Jackson's brain and we needed to come in asap for a MRI.  It felt as if someone had punched me in the stomach.  Mike was 2 hours away for a presentation he was suppose to give that afternoon for work but as soon as I had talked to him to headed home.  When Mike got home we took Jackson to hospital and checked in.  They had to put another iv in so they could do a MRI with contrast.  We had to wait forever because we were not on the schedule for radiology that day but had to be fit in.  When we finally got in Jackson freaked out and refused and cried to get on the table.  So we got bumped back while we waited for doctor and nurse to come and do a conscious sedation.  This is when I totally lost it and couldn't keep from crying.  I had been trying all day not to loose it but seeing him like that was hard.  Its like he was there but not there.  And even with the conscious sedation he was still moving a lot so they covered his eyes and Mike and I leaned in tube and held his hands and talked to him to calm him.  He still makes comments about it and I would prefer to never have him go through that again.  We found out Jackson has calcification on his brain which should not be there.  The doctor thinks it may be from his methotrexate injections but is not sure.  We are seeing a pediactric neurologist Thursday in Rochester, MN.  I am anxious for the appointment as I was relieved that he didn't have a brain tumor but I am feeling nervous of what it is and what the treatment is.  So next week will be very busy as Wednesday we have to be at hospital in Minneapolis by 7:30 am for infusion and to see rheumatologist and eye doctor.  Then Thursday we have to be in Rochester by 7:45 to see neurologist.  I pray that I have good news come Thursday!  Please keep Jackson in your thoughts and prayers.  He is such a great little boy and it isn't fair that after all he already deals with that we have this now.  My heart just breaks for him.

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