Tuesday, May 31, 2011

Hope

Jeff has been a pediatric dental resident at the Children's Hospital of Philadelphia (CHOP) for the last 2 years.  I've taken my kids to their ER several times over the last 6 years (RSV, Concussions, etc) and have always been pleased with the care we've received.  There is something about being there that fills your heart with hope.  In fact, CHOP's motto is "Hope lives here...right here." 

I agree with their motto...more now than ever.

Last Thursday we spent the day with the cardiomyopathy team from CHOP to follow-up on Chase's heart condition.  Many have wondered why we didn't go to CHOP to begin with.  When Chase's pediatrician 1st
heard the murmur, she told me to schedule a pediatric cardiology appointment at the facility I could get the appt the soonest.  It happened to be an office that was tied to Nemours Children's Hospital (Dupont) in Delaware.  So, when the cardiologist from that office diagnosed Chase, she called Nemours and told them I was coming.  I told her my husband worked at CHOP but she wanted to follow up with Chase the next morning so I went ahead and took him to Dupont.  They took great care of us there.  The nurses were fabulous.  Unfortunately, it didn't seem like they knew quite as much about Chase's condition because of how young he was and how severe his case already was.  After they monitored him on his medication, we told them we'd like to continue our care at CHOP.  So, they kindly accepted our request and scheduled us an appointment with one of the top Pediatric Cardiomyopathy teams in the nation.  The appointment was 6 days from the day we left the hospital and we just couldn't wait.  We had many questions already answered, but had thought of a hundred more.

The day finally came.  After several hours of testing for Chase at the CHOP cardiology dept (another EKG and Echocardiogram) we were finally able to meet with the Cardiologist (Dr. Kaufman) and her  4th year cardiac fellow.  Their team represents one of the highest rated pediatric cardiomyopathy teams in the world.  Unbelievably, they spent almost 2 hours in that room with us and answered every question.  Peace and reassurance began to take over the despair and fear that had been consuming my body for over a week.  Although Chase's diagnosis had not changed, Dr. Kaufman gave us just the news we had been craving to hear.

 

There is hope for Chase...

Some of the many things we learned from this appointment:

*Although Chase's condition is severe, he has been asymptomatic up to this point (showing no signs of heart failure) and has demonstrated no signs of developing an arrhythmia thus far.

*So far he responding well with medication and can continue to be managed with medicine (propanolol..beta blocker).

*Most sudden arrhythmia's in babies with HCM occur within the 1st year (huge sigh of relief!)

*When we move to Austin we will only be 3 hours away from another one of the top Children's Cardiomyopathy Centers in the nation located in Houston.

*As Chase grows older, the number of medical interventions and surgical procedures which can be performed (with fewer complications) increases.  We need Chase to make it to 3 or 4 years old so we'll have more options available to us for his future care.

*If Chase can respond well to therapy he can have a reasonable life expectancy with some activity restrictions.

*We live in an amazing time of medical innovation and there are treatments now available to these kiddos that didn't even exist just 15 years ago.

Jeff and I left her office with so much hope.  We felt 30 lbs lighter (if only I'd really shed 30 lbs while being there!)  The fact that there's even a chance that Chase could live for many years was music to our ears.  We are far from out of the woods, and really never will be, but at least we have hope.  That's good enough for me.

That brings me to my next topic...ALL OF YOU!  We have been so humbled and lifted by your words.  Your kind messages have brought us more hope than any doctor could give.  Jeff and I have sat together and read all of your comments one by one and have cried tears of joy as we have come to understand what true friendship and shear kindness really is.  Thank you so much for EVERYTHING you have done for us. 

Chase is a fighter.  I have no doubt about that.  He has had his own agenda since the day he was conceived without us even knowing.  He decided it was time to be born only 8 hours before my scheduled C-Section.  Laboring and delivering Chase was the most traumatic experience of my life up to that point.  He was by a landslide the most difficult baby of all 4 of my children.  He has always been so stubborn and needy. 

I wouldn't have had it any other way. 

I know now that he does have a mission.  He insists on being heard and unforgotten.  When he was an infant, the only time he didn't cry was when he was in mine or Jeff's arms.  If he hadn't been that way, it would have been easy to let him hang out in his bouncy seat, lay on the floor and just watch me as I tried to keep up on my other tasks, take care of his brother and sisters and not take the time with him that he deserved.  I'm so glad he is the way he is.

Below is a photo slideshow I made for Chase the week after he was born.  I am so blessed to be his mom. 

video

2 comments:

  1. You are so blessed to have such great care so close for your little guy. I am so happy you got more answers. You and Jeff are so strong and inspiring. I think about you so much! You have helped me realize I need to better appreciate everyday and all the great times and hard times my little ones give me and that I need to appreciate every moment. Love you!

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  2. Janell, My husband and I were praying you would get to a better cardiomyopathy team! I am so glad you got your questions answered and they were able to communicate a better outlook for you. This sounds much more consistent with the care we have received in Houston.
    We were able to identify the specific gene mutation in our daughter and then test for that gene in other family members. My husband has it, and so does our 1 year old son. All are asymptomatic (except of course for my husband's SCA last summer.) We wish you the best on your move. I would love to keep in contact with you. I looked you up on facebook.

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