Wednesday, January 19, 2011

January happenings

Its been a crazy busy month.  After the whirlwind of She Loves Me (the musical that Eric, Hannah and I were all involved in), Christmas with my Mum and Dad and having a new room-mate move in - it was a really busy December!  Somehow I though January would smooth out, slow down and get back into a natural, relaxed groove.

Instead its been non-stop activity!  I've been actively pursuing my interests in the arts - even though I am not directing anything this year  I have been focusing on getting my resume updated, new head-shots taken, I've had two auditions, started working with a vocal coach and even had a private lesson with an acting coach! (More on that when there is more to report).

I'm also back on Weight Watchers, tracking what I eat and working out (sporadically) on my new  Wii Active II.  I am doing well and feeling better about myself. I kinda hope I settle into the domestics around the house a little more - get myself more on a schedule - but in truth I've never really been good at that :) 

So thats the not very exciting updates.  Not to much to share but also not wanting to neglect this blog for quite so long as I have been :)

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:

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!

Wednesday, January 5, 2011

Our HSP story (part 5)

Its been a while since I was on here but I wanted to get this all down while it is still 'fresh' in my mind.  Where I last left off Thaniel was being unloaded via ambulance to the emergency unit at the Dorenbecher Childrens Hospital in Portland, OR . . .

As he was wheeled in on his gurney the admissions nurse recognized him from just the week before and said "what!? not you again!  what have you done this time my boy?"  Thaniel thought that was pretty funny but only managed a smile as everything in his 'tummy' was hurting.

The doctors and nurses flooded into his room and quickly assessed  that his bleeding has stabilized and that he should be sent for an ultrasound immediately.  It was eerie to me because we had to wait on an escort (instead of just wheeling him ourselves) the doctors wanted him supervised by a medical staff at every moment in case the bleeding restarted.

The ultrasound tech was great - she keep Thaniel calm even though it hurt to have the sensor on his belly.  She left us to get a supervisor and came back with two more doctors.  They spent quite a bit of time going over all the images. Finally, we were escorted back up to the emergency room.

We were there for just a few minutes when the nurse got an urgent message to send Nathaniel back to ultrasound. When we got back the ultrasound tech and the two doctors were waiting for us. They had indeed seen what they thought was a bowel intussusception and one of the doctors even sat down and re-did some of the ultrasound for himself. After several tense moments they determined that his bowels must have been MIRACULOUSLY un-telescoping themselves (likely during the two hours he was writhing in pain, vomiting and bleeding out while we waited for the doctors office to call us back) What the doctors had seen on the scan must have been the last of the bowel un-telescoping itself not 20mins before.

Thaniel was sent back to the emergency room the immediate danger over.  However he had lost an awful lot of blood.  We were told that his hemoglobin levels were dangerously low and that he may need to be admitted to the ICU for a blood transfusion.  The ER doctor on staff though recommended waiting an hour to re-test as he was finally stable.  She reminded us that children's bodies are very strong and heal quickly.  She said that if his level was 8 or under (normal is 24) he would have to go to ICU.  An hour later - his hemoglobin came back at 8.4 - Praise God!!

Nathaniel spent the next two days and nights on the regular ward of the Children's hospital.  Many of the staff from the previous week recognized him and came in to say hello.  He was in good humor through it all and joked with his nurses and doctors often.

He was however still very, very weak.  He could not walk without assistance as his joints were still very swollen. He could only seem to keep down popcicles and jello for the first 24hrs - but eventually moved on to soup and mashed potatoes :)  His body was still covered in purple spots from the broken blood vessels and he was still bruising very easily.  He continued to pass blood in his stools for many days (though we were very quickly assured that this was because there was still so much old blood in his GI system - not any new bleeding)  Nathaniel's input and output continued to be measured to ensure that his kidneys were still functioning.

It soon became apparent though that he was out of danger and would recover better at home.  So on the third day - we wrapped him up and again brought him home - this time however with STRICT instructions to bypass our doctors office and bring him immediately to an emergency room if any vomiting or bleeding resumed.