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

Update #5 November 24 2010

Emerson is HOME.  Unbelievable.  After anticipating he would be on the ventilator for 1-3 days after surgery, he was off the breathing machine in less than a day.  Nobody thought he would be out of ICU in less than 3-7 days, and he was discharged from the hospital in 5 days after open heart surgery.  Amazing.  Emerson is such a brave and incredible kid!!  I want to share a few stories about his bravery in the hospital, as well as have Emerson share more of his experiences, but for today and tomorrow we are concentrating on making sure he heals, continues to recover, and enjoying our time at home. I will add more comments this weekend!

Emerson had tests yesterday prior to discharge, which showed ekg is normal (normal for him), xray of chest shows a mildly enlarged heart (normal for him) with mild pulmonary edema (fluid in lungs) and mild pleural effusion (fluid outside of the lungs in the chest cavity).  Echocardiogram shows similar post-op findings that his mitral valve gradient is improved from what is was pre-op.  Echocardiogram also showed a small amount of pericardial effusion (fluid within the sac around the heart).  Normally there should be no fluid there.  As long as his fluid effusions continue to improve and not get worse, he should be able to recover on bed rest at home. He was on lasix in the hospital to help remove some fluid from the lungs, but is on no medications at this time except for pain medications.  Keep prayers coming for continued healing, no infections, and that his fluid effusions improve.  We will be following up with his regular cardiologist in about a week for a recheck exam and tests.

HAPPY THANKSGIVING TO EVERYONE!  We have much to be thankful for, including the huge and widespread and powerful prayer chains that have literally come from all over the world for Emerson.  We have FELT the thoughts and prayers, and I can't explain how happy my heart is for Emerson that he had such an unbelievably wonderful outcome. He worked hard to get to this point so we're doing everything possible to make sure he continues to heal!  Thanks you, big hugs and love to you all!

Jen

Update #4 November 22 2010

The human spirit is an amazing thing. Let me rephrase: the human spirit is amazing. it's not a "thing" at all, but LIVING, powerful, consistent and always there. When people choose to tap into that energy, exceptional things occur.  It's not to say that things always go the way you want them, but rather that there's meaning in everything that happens.

At least that's what I believe...

Thankfully, Dr. Bove has chosen a career, where no doubt, he is best able to tap into that energy daily and make lives better for so many people. We are honored to have met him, and know he is always going to do not just what is best medically, but what is best for EMERSON.  Dr. Bove is well known, but I still don't think most people can appreciate his surgical talents which are crazy wicked good. His real talent is the ability to "slow down and think"...which seems contraindicated when you are in surgery, on the inside of a kids heart. That is what Emerson required. And Dr. Bove made the right choice.

Emerson had all three chest tubes removed under light sedation, he is no longer on IV fluids or oxygen.  His incision looks great. Emerson looked at his chest yesterday and said, "oh I look ugly" and I told him it will heal and it's not ugly at all.  Emer was walking yesterday on his own, using the remote and his ipod...starting to get back to being Emer!!

Tomorrow he is getting xrays, ekg, echocardiogram. if those tests are good, there's a chance he could go home. AMAZING. Thank you everyone, thank you for thoughts, prayers...they are extended directly to Emerson, I tell him evereything. The team of nurses and docs are aware of all the good wishes as well. Thank you thank you thank you!  I will update again, as always ROCK ON!  Love, Jen

Update #3 Nov 21 Sunday morning

Saturday day and night has been tough for Emer but he continues to improve and move in the right direction. Anyone who has had an open-chest procedure/sternotomy knows how painful the first few days can be. Part of initial recovery is getting the GI tract moving again, which can be difficult while on morphine and pain meds which work against the GI tract causing nausea. Emer has yet to eat, but has taken some juice and we have finally gotten ahead of his pain now it seems.  He required a few doses of lasix for excess fluid in the lungs and fluid retention in face/limbs (common after by pass). The lasix and better pain control has allowed for sitting up a few times, standing for the first time, and a walk to the hallway (HOORAY!!) Along with better pain control, and continued chest tube drainage he is taking deeper breaths and starting to re-expand the lungs.  Today, we are hoping he will maintain his sats (pulse ox/blood oxygenation) when we try to wean off of oxygen, that they may be able to remove the chest tubes (at which time he will be more comfy), and hope he will start eating. Pray for no infections, pray for no pain, few set backs, and extend your prayers not just for Emerson, but for all the kids in ICU and their families!  Thank you, everyone, for all the prayers and thoughts. Just about everyone can understand to some extent the concern and worry when watching a loved one sick and getting treatment. it is especially difficult when it is your child.  All of us have gained strength from the support and good wishes for Emerson!  Including the team at UofM who continue to do a wonderful job! Love to all, cannot wait to pass out hugs, and as always, ROCK ON!

Update #2 Nov 20th saturday morning

Emerson's surgery went wonderfully. Dr. Bove was able to repair his valve without having to do a valve replacement, which is what we were hoping for. Amazingly, Emer was on and off by pass in less than three hours. Dr. Bove reports that he was able to remove a ring of subvalvular tissue, which has basically resulted in doubling his effective orifice (removing the amount of mitral stenosis, allowing for a closer to normal blood flow), while not creating any regurgitation (which would be the opposit problem of too much abnormal blood flow).  His mitral valve pressure has come down by half (from around 11 torr to around 5 torr (estimations in surgery). Emer was sedated on the ventilator for many hrs post op, but so far is breathing well without any ventilatory support except nasal O2.  Today we are hoping the three chest tubes can come out, the pacemaker wires and foley urinary catheter can be removed, his pain gets better and he can be less dependant on the morphine, start eating, drinking and getting out of bed.  He is doing AMAZING and so far things are going better than expected!!!  Lets hope for no complications, no post op infections, and  that Emerson starts feeling better soon!!

Update #1 Nov 17 2010

This is a summary of Emerson’s heart.  (The medical side that is... Anyone who knows him already knows what an inclusive and caring personality, sense of humor, and love of people, with a special sense for kids and babies, and animals-- comes from his huge heart!!  Oh--and love for WWE and sports/football….of course!)  At 11 years old, Emer is a normal 6^th grader, and fears asking a girl to dance probably more than open heart surgery!

Emerson was born with multiple heart defects. After initial repairs (Coarctation of his aorta at 3 days old),  it was patching a large VSD as well as mitral valve repair that allowed him to survive off a ventilator and come home after first 4 ½ mos of life in ICU.  At that time, it was expected he would need another mitral repair around 5 years of age.  He has exceeded that time by reaching 11 years of age before now requiring another mitral valve repair.

It is our hope that Dr. Ed Bove can repair his current/own mitral valve.  However, we are prepared for a valve transplant requiring a plastic valve if Dr. Bove evaluates his valve while on by pass and feels that is the best option.  We trust Emerson’s surgeon to make the best decision based on what his valve looks like when he is in surgery.   If/when Dr. Bove chooses to repair Emerson’s valve, it may be days, or a few weeks post-op, before we are able to get a good evaluation if his valve is working well, and can preclude a prosthetic/plastic valve transplant or not.

Emerson is doing awesome and seems to be well prepared for surgery.  Having had procedures and surgeries before, he is  aware of the routine.  A long preop day on Thursday will include chest xrays, ekg, echocardiogram, blood pressure, bloodwork, meeting the team (anesthesia team, cardiology residents/fellow, etc).  Emerson has had all these tests prior, and knows what to expect  the day of surgery getting IV catheter placed, and the worst part for a kid—no breakfast that morning! 

We have been SO BLESSED with the support for Emerson.  Hart Middle School has been wonderful, and the team of people there are excellent  for our 6^th grader!   The family at Hugger Elementary has supported Peyton (3^rd grade); their love extended for Emerson even after he graduated is amazing.   Parishioners at S.S. John and Paul have enjoyed watching Emerson grow  to be an alter server, and their prayers continue to help us.  Through our divorce, the boys' have had an exceptional therapist who has become their friend and confidant, and helps our family through some difficult times.  The veterinary clinics where we work (Mike at VCA , Jen at Lake Orion Veterinary Hospital, North Oaks Animal Hospital, and Animal Emergency Hospitals/Macomb and Flint) are friends/clients who are as close as family to us.  In addition, all of us have neighbors, teammates, colleagues, friends and family.  With the help of Emerson’s friends at school, family and extended family,  and the most wonderful Grandparents (Granny Kaye, Art, Baba Sue, Papa Wes) I have no doubt that Emerson and his little brother are confident and feel loved and secure going through what could be a very difficult and scary time.

We are not  overly private, and welcome any questions, phone calls, texts, emails, facebook postings….Feel free to spread the news about Emerson’s surgery, and pray that our son does well, and the team taking care of him makes the best decisions for him.

Thank you for all the caring thoughts, prayers and support!  Hugs hugs hugs and as always, ROCK ON!