Wednesday, June 09, 2010

Making Something Happen

Well, so much has happened since I last blogged, that I really don't even know where to begin!  Clayton ended up staying at ACH through Monday and improved significantly in the last day and a half he was there.  His pain level seem to be nil and he was very interested in regular activities, and was tired of being in the bed.  And even though we were still having major communicatin issues with the neurosurgeon, we were willing to give him the benefit of the doubt when he kept telling us time would help Clayton regain his normal function level.  We went home Monday afternoon a bit anxious, but happy that Clayton was feeling so much better. 

But then yesterday morning was basically a rerun of last Thursday morning.  He woke up in pain, thrashing and crying and trying to vomit.  We spent the morning in crisis mode trying to decide what to do since we did not feel comfortable taking him back to ACH.  We finally settled on driving him to Memphis to see new neurosurgeons at LeBonheur Children's Hospital.  We were seen in the E.R. and the resident knew immediately that something definitely wasn't right and promised they would get to the bottom of it.  We met the attending doctor this morning, Stephanie Einhaus, and were very pleased with her bedside manner and determination to get Clayton fixed for real.  We've already learned a couple of things from her that we weren't told at ACH which definitely reinforces that it was a good decision to come here.

Clayton stayed in pain most of the day yesterday, but it finally subsided late in the afternoon.  His main complaint now is he wants to sit up and orders are for him to lay in a flat bed to keep his shunt from draining as much. (You know the shunt that is "working properly?"  Well, all docs here were very quick to ascertain that of course it's draining too much for Clayton---which doesn't take a BRAIN SURGEON to figure out!!!)  It was worth the drive over here just to hear our feelings as the parents validated for the first time since his surgery!

Currently we are waiting for his CT from yesterday to be compared to his CT's over the last week at ACH.  After the docs see those, they will have a better idea what they can do for him.  In the meantime, Brian and I have been super impressed with this hospital and their efforts in making the parents an equal part of the caregiving team.  It's amazing how different things can be from one hospital to the next.  (DISCLAIMER:  We love lots of people and departments at ACH, but the neurosurgery department leaves a lot to be desired).  

We are praying for a quick and correct resolution to Clayton's problem and praying we can get back home to live as a family with little Jackson (wonder if he'll even know us after this is all over?!).  We are looking forward to reporting Clayton's full recovery! 


Anonymous said...

im keeping you all in my thoughts!!! im just jackson is being well taken care of!! ((HUGS))

christy in florida

Christina VanGinkel said...

Praying for each of you to get beyond this struggle and for Clayton to recover 110%!

Wherever HE Leads We'll Go said...

So sorry to hear that you are in the hospital again, but I am glad that things are going better now. It does wonders to feel like you are being heard! Praying that the doctors will make wise choices for Clayton's care and that he will be on the mend and heading home in no time. Continuing to pray for strength and endurance for you and Brian.

Tiffany said...

I am sooooo sorry your family is going through this. It is hard enough dealing with a shunt, without doctors telling you that your child is fine when he clearly is not. You guys keep being that fierce advocate for him.

Anonymous said...

Ashley & Brian,
I know you don't know me but your dad is a friend of mine. My daughter came home from LeBonheur 2 weeks ago after having a third ventricalotomy. I'm sure you know what this is but they put a hole in the third ventrical so the fluid can flow, opposed to the shunt. We used dr. Burson the first time but he would not do the second one, the first grew up. Any way I said all of that to say that Dr. Einhaus did her surgery and we liked her. She knows her stuff!!!!! I wish you all the best. And all of you are in my prayers.

Diane Stell

Kelli said...

continuing to pray, I'm so glad you went to Memphis. What a great idea. hugs to you all.

Cheri Pryor said...

Continuing to keep Clayton and your whole family in my prayers, Ashley. Thank God you have found a team that is listening to your concerns and HEARING them.