Saturday, October 2

Children's visit for echo and communication journals to school

I keep meaning to sit down and update the blog, but wow have we been busy.  This is Tommy and Liam's second year at early intervention preschool.  This year I made them new communication books for the daily back and forth information from me to teachers, nurse, SLP and/or OT.  These worked fantastic last year.  First of all, their teacher Mrs G is fabulous.  And with all the information in one spot, I'm more likely to remember issues, SLP homework, etc.  Aren't they just plain cute?

This is what last year's journals looked like with the information going back and forth.

We spent an entire day at Children's recently.  Left Ferndale at 5:30am and didn't get back until well after dinnertime.  Tommy had his regular 6 month echo on his heart and we met with General Surgery to look at his pending hyrnias and his G-tube.  We also took candy to our favorite blood draw tech Hector.   Daddy and Liam are very sleepy in the wee hours.  Liam was allowed to keep his pj's on for awhile, so was Tommy but Daddy wasn't :)

We checked Tommy in at 7am for a sedated echo.  Sedated because.... have you seen Tommy lately?   He is a wild man of bursting energy and to stay still for an echo was just not his scene.  So, he didn't actually receive the sedation until almost 9am (grrrr) and he was given 1000 mg of Chloral Hydrate (65mg/kg) and after 30 minutes of BEATING me and JUMPING and BANGING his head while his eyes were closed, I finally asked for another nurse to help me and expected him to fall softly to  The nurse assured me that 30 mins was about when most kids drift off.  Well, the nurse practicioner needed to come back and Tommy received an additional 150 mg of Chloral Hydrate and after a total of 70 minutes of the most BALISTIC and WRITHING and HEAD banging and TOSSING and THROWING himself off the bed dozens of times with me catching him,  and a total of THREE nurses... we finally watched Tommy absolutely... in .... one...split...second...drift to sleep.  That is him below.  Sleeping. 
I'm in the opposite corner curled a ball... twirling my hair.... sucking my thumb... teary eyed.
One of the nurses said it was the most "impressive" displays of a reaction she has seen in her nearly 25 yr career.  I dared her to say "worse".  She didn't.  But she did tell Colin when he finally came to join us with Liam after their breakfast that I deserved a medal. 
I won't allow Tommy to ever go thru that again.  Of course he doesn't remember it because of the type of drug it was.  But I know what happened.  And we won't do that again.
The echo pictures were good enough to determine we don't have to go back for a year!  The mitral valve still has a mild to moderate leak.  But it's been consistent.  And can probably wait until his teens or older to repair.  Tommy celebrated with yogurt.  I waited until at home to celebrate with something tall and cold.
General surgery was equally as great of news.  The hyrnias are fine for now and just need to be watched.  His G-tube looked great and we are caring for it just fine.  The surgeon even offered to look at Tommy's undescended testicles in preparation for a visit to Urology in December.  He didn't think we needed to do anything.  So... the next year we have, drum roll please, no surgeries!
One really good additional thing happened that day, Colin and I rotated caring for Tommy so that the other one could take Liam into EVERY playroom in the hospital.  We had a blast with Liam.  Painting, coloring, walking, talking, playing with cars, the whole works.  Very sweet one on one time with a very sweet toddler.

Tommy Adventures