Monday, March 21, 2016

Thankful to be home after today's appointment...

There are certainly many gaps between this blog entry and the last... but here is the update from today's appnt.  Thank you all for your prayers and concerns.

We are not having surgery tomorrow thanks to a UTI that has recently been causing high fevers.  I'm strangely thankful for this infection....

Shea's fluid build up and some bleeding around the outside of his brain is no better, but it's also not worse compared to 3 weeks ago.  Since he is not having acute symptoms, they will let his body heal from the UTI and try to naturally achieve equilibrium of his head/brain for 3 more weeks.  As before we will watch to make sure he doesn't have headaches, vision changes etc etc...

Then ...the same routine... repeat MRI, see what it shows, and make the decision on the surgery or not at that time.

One other odd factor is that the ventricles of his brain... have shrunk very significantly since the last visit, to almost slit ventricles.  We are all unsure why, because his shunt is set on the very lowest ventricle drainage setting.  Dr Li hopes that the brain tissue doesn't continue to follow suit and shift  inward toward the ventricles as it has in the past... but for right now the best thing to do it to continue to watch him..

For now I'm relieved to have dodged "number 10" since june.   It's a bit unsettling to be at a point that what is happening to Shea is not making much sense, not black and white, not predictable.... but God knows and I will be content.  

We also received his bone density test results, which were poor.  The treatment to address this isn't a safe option for Shea with his other issues going on right now... so that will be put on hold until down the road.

3 more weeks of some nervous anticipation, but very happy to have him home, safe and sound for Easter.

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