Tuesday, January 11, 2011

HSP - the finale (part 6)

It took me a long time to get this all down - here is what you might have missed:

http://www.theateragogirl.blogspot.com/2010/05/hsp-overview.html


http://theateragogirl.blogspot.com/2010/05/what-are-complictions-of-hsp.html


http://theateragogirl.blogspot.com/2010/05/our-hsp-story-part-one.html

http://theateragogirl.blogspot.com/2010/05/our-hsp-story-part-two.html


http://theateragogirl.blogspot.com/2010/09/our-hsp-story-part-three.html
 
http://theateragogirl.blogspot.com/2010/09/our-hsp-story-part-four.html

http://theateragogirl.blogspot.com/2011/01/our-hsp-story-part-5.html


Once home from the hospital for the second time - Nathaniel followed a rigorous schedule of sleep, take copious amounts of meds (mostly steroids and stomach pills).  Eat soft foods, sleep some more, go see the doctor, pee in a cup, get his blood drawn and repeat.  And repeat.  And repeat. And repeat for the next 4months.


It was a drain emotionally and physically on all of us in the family.  At night Thaniels joints ached constantly so Eric and I took turns rubbing them for him.  The Prednizone caused his face to 'moon' up and he was puffy and bruised for a good 6weeks or so.  He lost his energy very quickly but was bored and frustrated lying on the couch and in bed week after week.

But there was gradual improvement.  Eventually new Purpura stopped emerging under his skin.  Eventually his urine started to come back 'clean' in the lab.  Eventually, his blood work looked strong and healthy.

During this long recovery - Nathaniels immune system was very compromised so school was out of the question.  We had a FANTASTIC home health tutor who came over and helped him at least keep up with some of his school skills.  In the end though - he ended up missing almost a full 5mths of school.  So he is now repeating the fourth grade.

Our doctors do not know if Nathaniel's HSP will come back.  Some kids never experience full-blown symptoms again - some will have many recurrences.  For now, we try to keep him healthy, keep his immune system strong and pay very close attention if he gets a cold or flu.

Nathaniel was weaned from the steroids and to look at him today - you would not recognize the kid he was 11 mths ago.  He has grown a couple inches and has thinned out once again.  He is back to Tae kwan do, school, church, riding his bike, playing with friends and all  the rest of the things he enjoys.  I am grateful everyday for his restored health.
Finally - thank you to those of you who asked about him, came over, gave gifts, and prayed for Nathaniel over the past year - it is deeply appreciated!








3 comments:

karin said...

Sweetheart-hope this is the end of the experience for you all. Does this type of illness have long range effects?

dotoner said...

Hey Karin - the long range effects are usually renal (kidney function) so far his looks good! They will retest him every 6thms-a year just to make sure.

StefRobrts said...

Looking at him now it's easy to forget you all went through that. I hope that's the end of it!