Monday, January 25, 2010

The J-man's update

So I'm not real thrilled about the whole hormone shot situation.  The nurse gave us instructions on how to administer the shot. Prime the pen, put a fresh needle on, dial out to the appropriate dose. Clean J's bottom, let it dry. Push the button, jab it in, count to 5, and take it out.  Sounds pretty simple. So Thursday night, this is what I did!  Jeffrey is such a trooper - he just watches every poke he's ever gotten and never even flinches.

Friday night's injection comes along, and I have the instruction pamphlet out to make sure I'm doing it right again. Here are the exact instructions (without the babble):
  • Push the needle under the skin...
  • Press the Push Button all the way, keeping it fully depressed with the needle under the skin for at least 6 seconds to ensure the full dose has been delivered.
  • While keeping the Push Button fully depressed, remove the needle from the skin.
  • (Next page over regarding removing the needle from the pen) The dose scale will reset to 0.0 and the pen will be ready for the next use.
So, not exactly as the nurse explained it, but pretty close.  I follow the instructions, but as I'm pressing the button, the dial starts going down!!! Uhhhh.. um. So I pull the pen out thinking "what the hell just happened?? That didn't do that last night!!"  Then I realize that just pushing the button - nothing is coming out.  As the dial goes down, the hormone comes out!! Okay, so maybe this is a "Duh!" moment for all my nurse friends and maybe some others of you - but how was I supposed to know??  The nurse SHOWED us how to do the injection, but when she practiced on the dummy, the dial didn't go down. The instructions say "Press the Push Button" and on the NEXT page says something about the dose scale resetting to 0.0.  Goodness.

In my defense, I did wonder on Thursday night why it did not appear that there was any LESS liquid in the pen, but assumed I was doing it right.  So now it is 8 p.m. on Friday night with no contact available to figure out what to do.  J's only gotten a partial dose (and I wasn't even sure how much) and for sure did not get ANY the night before.

Well, now that we knew how to do it, we just waited until Saturday night, gave him the correct dose, and did the same again on Sunday.  This morning when I spoke with the nurse (sub for Dr. C's real nurse), I just told her to let the doctor know what happened.  Hopefully it was enough to give a valid result on today's bloodwork Jeffrey had drawn.

After all that, my gut feeling is the hormone injections were not what Jeffrey needed. His blood sugars were still low, and he had headaches all weekend (which he had before the injections).  It appears that my sense of urgency in this matter is not translating well to the doctor or nurses.  I work tirelessly to maintain his blood sugars above 70 (sometimes getting up 2-3 times a night to check him and have to wake him to feed him).  Jeffrey screams, holding his head, and is so frustrated with everything right now.

Nothing makes him happy - and yes I know... could it just be an almost 2 y/o tantrum?? He has thrown these "tantrums" since he was about 3 months old - flailing his head, hitting his head, arching his back, and screaming... for HOURS.  Tylenol never worked when he was really little. Motrin sometimes takes the edge off.  His right eye waters randomly. He is extremely sensitive to light when it is really bad. A sunny day will set him off.  The only thing that seems to help is for him to get a nap, or some sleep.  I say that, yet some mornings are a bear - going from darkness to light and he acts like I'm stabbing needles in his eyes.  There are also times, like in this picture, during periods when he's at his worst that his eyes look puffy.  Not just in the morning, but all day. This picture was taken late afternoon.  Maybe I'm over-thinking everything. *shrugs*

February 2nd at 7:30 am we will check into KU Med for him to have an MRI of his head (with and without contrast).  My hope and prayer is that this will provide some answers.  J's IGF-1 levels are consistently low - last check was 43. Most children hang out in the 80-200 range.  Something is wrong with my J-man, and I pray for patience, pray for God to guide the doctors, nurses and healthcare practitioners to work with us with a kind heart, and that we can get Jeffrey healthy.

"They that wait upon the Lord will renew their strength. They will soar on wings like eagles. They will run and not grow weary. They will walk and not be faint." Isaiah 40:31 - my favorite verse that I so often forget to embrace.  God's energy. God's plan. God's time.

1 comment:

  1. I'm so sorry you guys are going through this. Do you want to send Aly over here Tuesday for a girlie playdate?