Last Tuesday, Noah and I went to the hospital to have a scan done to see if his ommaya reservoir (port that goes into his brain) circulates as it should (through his entire CFS – to his spine, etc.) This test is for the Houston treatment. We were told that he would have to lay down for 3 to 5 hours and we thought “no problem – we’ve done that before in Shands.” I didn’t know that he couldn’t move at all – no rolling from side to side, no going to the bathroom (Thank goodness for the plastic urinal!)
The process started with a trip to the clinic to have labs. Just looking back, and reminding him, that this used to take up to 5 nurses and an hour of kicking and screaming at the top of his lungs. Shaking, vomiting, more screaming… on and on… Now…”Good morning! Where’s the needle? Porty and I want the needle!”
We get our blood work and head down for the scan. “Mom…I think I’m bleeding.” Blood was pouring down his side; we sprung a leak out of his port. His platelets were super low and we didn’t use a bandaid. Back up we go! Clean up and we leave with a bandaid.
So…time for the pictures. This one took me a little by surprise. Ready? I knew that they were putting dye into his ommaya reservoir, but what I didn’t know was that it was radioactive. Yes…radioactive isotopes…yes…just like The Incredible Hulk, “but not as many” they joked. What can I do but pray. God is always in control and he and I talk all day long. Sometimes laughing, sometimes not.
I gave Noah a fortune cookie for the first time. “Mom, you’re telling me that there’s a message in the cookie!” Mine said “It is best to consult others before taking unusual actions.” I was thinking…Like right now???? Noah’s said “Others seek your courage.” Took my breath away a little. Everyone involved was really wonderful. How they do that daily… beyond me, but they do receive our prayers daily!
He laid there, got a needle in his head with Hulk serum and, of course, watched Star Wars all day – with him comparing himself to Anakin, the good Anakin. They wanted him to be completely flat and the bed didn’t have a level; thank goodness for Dad telling me about an app! He held still for a hour, then another hour, then another, then another, then… off to the Lego Store at 6pm!!!!
This morning, we have an MRI at 10. Please pray for my sweet, sweet boy. Dear Heavenly Father help us today.
Thank you for your prayers!
See you soon my brave babies!
