Saturday, January 16, 2016

Brain trumps cord .... latest recooperation update on Shea

Good news, and "not so good news" in Shea's rehab.   The Good news is that the "bad" news we received this week, was not so bad that it didn't allow us to come home from Buffalo on Thursday.  (and yes I do pack a extra set of clothes now when I go .... have learned my lesson)  Also, more good news is that all of the sutures are now out... and we continue to be leak free.  I check his back every morning and every night, and have been breathing a sigh of relief when I find it to be dry each time so far.

When Shea had his MRI on Thursday we were hoping to hear that his 1) ventricles had stabilized ( meaning not shrinking too fast, that can cause problems of it's own ) AND that the 2) fluid build up in the subdural spaces (outside of the brain ) had plateaued or resolved since the shunt setting adjustment one week prior.

Number 1 did happen, however number 2 did not.  Shea's fluid build up outside of his brain has actually worsened since the MRI one week prior.   He is still over draining according to what his brain can tolerate right now.  His shunt was changed from 1.5 to 2 to slow the drainage.  This is less safe for the lower back dural repair protection, but brain trumps lower spine of course - so the changes were made.

It is thought that his ventriculostomy might still be functioning as well... so when shea's shunt is programmed for a certain rate of drainage... he's likely draining more than what another child might drain, because he's got two systems working for him now. 

We return to Buffalo in 2 weeks to see how the fluid around the outside of his brain is reacting at this new setting.  He also unfortunately developed a small sore where ortho had to remove the hardware in early December bc of a stitch that was being pesky and not dissolving properly.  We are watching it carefully, and it seems to be healing and heading in the right direction.

Our request for prayer - Prolonged fluid buildup outside of the brain or any sudden changes in volume of this fluid build up can cause risk of a brain bleed.  The team is being vigilant, and checking him frequently so I'm sure this is worst case scenario... but prayers for protection are appreciated.   Also that his spine will have fusion, and that his vertebral column will be strong and protected.

also prayers for us as we prepare his diet.  Some of his labs are still not where we want them to be, requiring supplementation and coaxing him to eat more than he would like at times... but he is gaining weight quickly.  For a child who has activity restrictions , is unable to burn calories well, and who shouldn't gain weight rapidly because of mobility issues and protecting his spine...this is a problem.  I'm hoping to get more guidance from endocrinology and dieticians, but it's been hard getting them to follow up with me.

Dan is in Chicago in freezing temps this weekend... and mom is home manning the troops on a 4 day weekend!  (yikes)  Grandma Kulp is wintering down south as of today... and didn't take me with her ... !   Shea did get through 2 half days and 2 full days of school last week and was a champ.  

Thank you all for checking in.....  Liz(zzzzzzzzzz)   xoxo