December 11 2010 Neurology and 3 weeks post op update

Emerson has had uncontrolled movements of his left side.  It is primarily his left arm which rotates at the wrist and will kind of "fly upwards" if he tries to hold it still at his side.  He will persistently and rhythmically kick his left leg.  Emer's head/neck and speech is also somewhat affected, as he moves his lips and cheeks/tongue as well.  We have been in touch with his pediatrician, the cardiac group at UofM, and saw a neurologist yesterday hoping to pinpoint why he is having these symptoms as well as determine what treatment may help.

Everyone is in agreement that these are post op symptoms that can occur in kids that have had by-pass procedures.  The neurologist was very thorough and great with Emerson.  She confirmed that the MRI of his brain and cervical spine shows no obvious strokes or lesions, but we will get the official radiology report on Monday.  Over this weekend Emerson has started on Cogentin, a medication to treat his dyskinesia.  Right now, we are hoping that #1, the medication helps his symptoms. #2, we hope that his symptoms will eventually disappear.  It could take weeks or months.  The neurologist is hopeful that his symptoms will eventually resolve, and said they could go away as fast as they came on.  The good news is, his symptoms do not seem overall to be getting worse, and it doesn't seem progressive at all.

I will add more details later but wanted to get this news out!  Thank you everyone for all the prayers!  We are all super thankful for all the support for Emerson and he is getting stronger and stronger.  We will do a trial back to school for a few hours a day this week!  Love to all.

Update #6 December 1st 2010

Emerson had a recheck with his cardiologist yesterday.  Echocardiogram is excellent!  His mitral valve numbers are just about the same as post op values.  Mitral valve pressure gradient is down from 12-14 torr to 5-7 torr.  His blood pressures and EKG are good.  The small amount of pericardial effusion has resolved.  Dr. Weinhouse is very very happy with his recheck, as we ALL are!  He will continue to communicate with his surgeon, Dr. Bove.  Restrictions are no lifting anything over 5 lbs for 6 weeks, no running, jumping or gym for 6-12 weeks.  He can go back to school when he is up to it.  It's still less than 2 weeks post op, so we will be working on things at home trying to get him caught up.  When Emerson is stronger he will start back half days.

Emerson has been mainly in bed except for getting up a few times on Thanksgiving, and to leave the house for his recheck yesterday.  The most recent concerning things are the development of what appears to be choreoathetoid movements.  Emerson has significant uncontrolled movements of his left arm and left leg, and sometimes his head/neck/face.  We are making an appointment with a neurologist and his pediatrician. I am wondering if these movements are also hindering his weight gain, as I'm sure he's burning more than normal calories with these movements.

Cognitively, Emerson seems great.  He hasn't been sleeping enough (still up at night with a cough, which seems to be improving since surgery) But while he is awake he is happy, seems to be able to focus on games and puzzles, and has enjoyed visitors. 

We are working hard on his recovery, hoping he will gain weight, these uncontrolled movements will subside, and he will continue to get stronger!  Thank you everyone who has helped, who has prayed, thank you GRANDPARENTS who have a special connection with their grandson and also help us as parents.  Please pray for all sick kids, for good surgical outcomes for heart kids, and for little or no complications from by pass.  What these kids go through is amazing.  Emerson is one tough incredible kid!  Love to all, hugs hugs hugs--

Jen