Shea had his programmable shunt placed on tuesday. Everything went relatively smooth in regards to the surgery itself. Post op drainage checks and shunt series look good. Surgical pain is managable, and not out of the ordinary.
About 2 hours after surgery shea developed upset stomach, tachycardia and persistant headache. When all these sypmtoms were still going strong by 8 pm it was decided he needed another rapid mri to make sure he wasn't having pooling of fluid outside of the brain bc of overdrainage, or any bleeding or problems from the surgery itself. The MRI checked out just fine.
Note - we were able to experience his first reprogramming after the MRI as the magnets from this machine will alter the settings on his shunt. He was originally set at .5. This setting is the "lowest" it can go, meaning it provides the most amount of drainage .... to keep pressure off of the dural repair. The magnet from the MRI set him up to 1.5 briefly until he was reprogrammed.
(public service announcement, no cool magnetic toys should be set on my son's head :)
By Wednesday morning when his symptoms were still intense, they decided he was probably experiencing low pressure syndrome, and his shunt was reprogrammed to 1.0. It seems that this change is keeping Shea mostly headache and nausea free when he is laying flat in bed with his head of bed less than 20 degrees. Unfortunately trying slowly and repeatedly throughout the day Shea still can't tolerate sitting upright, in bed or his wheelchair. The head pain becomes severe, and it even escalated to vomitting today ... poor guy.... but he is more alert, eating a little bit and able to find comfortable positions most of the time. They have good pain medication for him to use when he needs it.
There was talk of setting his shunt to 1.5 tonight to see if we could get further improvement of symptoms. However.... for various reasons we are holding off on this until tomorrow now.
- 1.0 is safer for the dural repair, so they want to give his body a fair chance to acclimate to this setting and only make one change per day
- 1.5 would be the next setting to chose, however we can not go any above 1.5 in the recent future... so if we do this we really hope that it will solve the problem
- there are some GI factors that may be affecting the efficiency of his shunt and some of his other syptoms. We've decided to address that more thouroughly all day today as well.
Right now he's sleeping comfortably. He's stable, and in a safe place to be going through this. Although we want to be home in the worst way ... we know help and problem solving is just a phone call away here.
I would ask prayers for symptoms to resolve on there own by tomorrow. Prayers if they don't resolve naturally that the 1.5 setting would give full relief. Prayers that this is truely a low pressure issue, and not a shunt failure. If anyone is interested he has a medtronic strata valve.
No matter what is happening here, you can't take excitement of Christmas and Santa away from this boy for sure! He is asking non stop,.... how many days, hours etc until it's Christmas day? So fun to see.... To my 3 at home... i'm sorry i'm missing out on this exciting time for you this year. Hint hint husband.... pictures and videos from home would be good...so i don't miss so much.
We're hoping for an ideal scenario to be able to go home on Christmas Eve if things fall into place for him tomorrow. If this isn't meant to be.... we will make the best of it and bring the kulp tribe and Christmas to Bryant ave room 106. We already have had our lights up ..... we shall see.
Again and again thank you to all of his cheerleaders who have supported us with meals, videos, hello's, assistance with managing the homefront and more. We are so very thankful.
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