So over the weekend Nicky's balance seemed off, Super Bowl Sunday Feb 2, 2014, he fell twice - putting me in panic mode. Monday at 9am I was calling our local Neurosurgeon and leaving messages, also emailing my primary at St Jude. As luck would have it they were all out of town. So Tuesday morning Nicky woke up moaning and pointing to his forehead and seemed fatigue. The Momma bear that I am - I don't wait - I act and took him to ER. They let me access his port and draw his labs which was a comfort to us all. When they ordered a shunt evaluation, I requested a full brain and spine MRI - I wasn't willing to sedate him twice and wanted both. Well 14 patients ahead of us, they wanted to admit us - seemed silly to me when there was no reason a child already NPO ( no food by mouth for at least 8 hours) to stay there for nothing but wait.

We chose to leave, the following day Nicky had a decent day but still not himself completely. Last night who knows why but I placed my hand on his shunt while he was sleeping and felt a dent. It was 11:30pm and two long days but I wasn't willing to let this slip and was calling his NS ( neurosurgeon) immediately. She told us to come in yesterday around 11am. So once again afraid they would want tests my tired glossy eyed fighter screamed I'm hungry from 12pm till 1pm ....our doctor was in emergency surgery so we had no choice but to wait. Persistently ... Yes we waited while the entire floor of 40 patients at Rose Cancer Center heard him screaming. Long day! So she evaluated him, she told me that shunt patients are coming in with the bromic ( might be the wrong word) but drop in weather with it being so cold is actually contributing to shunt and balance issues. She also said its cold season how is he.... I said just getting over 2 weeks of an ear infection and from that the flu but he's eating great. She said that's a great sign, she said I know you so we will get these tests done ASAP. So this Tuesday Feb 11, 2014 we will have a full brain and spine MRI and shunt x-ray evaluation.

I find comfort to drive 20 minutes away to a hospital that will let me prep his port for sedation and pick him up and go home. I am fried having to board planes to get to Memphis and jump on a shuttle and pull into those gates that I lived in and saw so much immense pain - it still is surreal that I lived through that and continue to. But for Nicky, I can't believe what this child has had to endure and continues to. While there is the comfort of knowing the faces of staff at St Jude, after almost 4 years we also know what it's like to sit in e clinic waiting for results and then the dreaded, hand wave " let's go look at the scans......." It's like dooms day when you don't get the thumbs up or all is good then hey you want to see?

The last year and a half has been stressful wondering ... So I guess fedexing the MRI to St Jude this Tuesday we know it is slotted for review on Feb 12, 2014 at the weekly BT meeting. Of course we are already dreading the St Jude call light up my phone, but it's better than boarding a plane a wreck not understanding what they are interpreting or seeing.

So, are things good? Mmmmmm, we just want our son to be ok - we need extra prayers this entire week and oddly we are just hoping its a cold or a fixable shunt issue and that we will still hear the news we have been waiting so long for which is he's NED and changes are stable or better !

God,
We rely completely on you ......completely - please be with our family and have your hands on our Nickybear! It is through your son Jesus Christ that took all our burdens to the cross for us all...... I ask you Lord to give my Nicky back the energy and balance he had and to restore him because he was created for your glory and created in your image.
In Jesus' name AMEN

We will report to you as soon as we can, remember we have 3 teams so it's not just Jude we will wait on....thank you for being with us always ....

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