Thursday, May 16, 2013

No more surgery for now

Yesterday our surgeon meticulously evaluated Melia's echocardiogram as well as her arterial and venous oxygen levels and determined that another tightening at this time is not necessary.  Our hope is that over the next year that this banding plus her own growth will get the left ventricle to the 85-100% function needed to be a systemic pump so her heart is ready for the double switch without repeating this surgery again. Melia has done beautifully with her recovery.  The hardest thing for her are the frequent nurse visits,  redressing her central line and just wanting to go home.  We are checking another echo this morning and if that looks good then we can get rid of a lot of her lines.

Wednesday, May 15, 2013

Second Heart Surgery

We are in the hospital and Melia is recovering from her second heart surgery.  She had a surgery to tighten her band in an effort to increase her left ventricular mass and better prepare her heart for a Double Switch in 1-2 years.  Our doctor, Jim Hammel, discussed with us pre-operatively the fact that it's best to do a double switch in infancy but since we did not have that option the second best thing we can do is slowly train up the left ventricle over 2 years so she can still get a double switch when she is young.  The younger a patient the better the heart adapts to change.

So, with that information and the consensus opinion of several doctors we decided to move forward with her second banding.  During the surgery we were a bit anxious because it seemed to be taking longer than we expected.  She was away from us for about 2 1/2 hours.  We had friends and family praying for us and our anxiety subsided by God's grace.  In hindsight, the surgeon told us it took longer because he was testing the velocity over the band to decide how tight he could safely make the band.  He also had to dissect away scar tissue that was present from her first surgery.  These two factors meant a longer surgery but she did very well.

We are now 2 days post-op and Melia is more alert, smiling, talking and hungry.  Those first two days it was hard to watch our daughter be sad. sleepy and uncomfortable.  But, the reality is that two days is a pretty short amount of time for her to be "out of it" following a heart surgery.

Melia has had great "numbers" since surgery and her chest x-ray as well as her echos look good as well.  In fact, she is doing so well that the surgeon told us he wants to repeat an echo today to assess whether or not he should take her back to the OR for one more stitch in an effort to tighten the band just a touch more.  If he does this now there is no scar tissue to dissect away from the heart and the chest would be easy to open up since it is not healed up yet.  She also still has all her lines in and her catheter.  If he decides to do this it might decrease the possibility that he would have do to another PA banding a year from now.  On the other hand, too much stress to the ventricle could cause it to fail (very bad) and there is a chance that this band plus her growth over the next year would tighten it enough to adequately prepare the heart for a double switch without having to band again next year.  This decision is part of the "art of medicine" and we are thankful for an experienced surgeon that will help us make a decision.

I would tell anyone in our situation that the first and best thing you can do is give it all up to God and invite many to pray for you.  The other thing I've learned is that the anticipation of surgery (fearing the future and all the possible things that could go wrong) is harder and more life draining than actually being the the midst of surgery/hospital care.  It just does no good to worry and fear.  It is so much better to trust and give thanks for the days and moments we are given with our loved ones here on earth.  I need to reread this next time we are anticipating surgery to remind myself of this truth!

Friday, May 10, 2013

Three Years Old!!

Today we celebrated Melia's third birthday!!  We began the day with monkey bread for breakfast that was lovingly made by her three older siblings.  They woke me up at 5:30 a.m. because they were so excited to make her a birthday breakfast!

Melia got to take special snacks to Happy Face School today and we ended the day with a carnival at the the big kids' school.  This little girl ran all over the place, climbing and sliding down a big bounce house obstacle course and having the time of her life.  Tomorrow we will open presents and have a birthday party with friends.  We even got to have a special dinner with Grammy and Grandpa earlier in the week.

Miss Melia is such a treasure to us and we are blessed by each day we get to enjoy her joyful, loving spirit! Love you, Melia!!

Thursday, March 28, 2013

Six Month Check-Up

Last week Melia had a Cardiac MRI and today we met with her Cardiologist for an Echo and clinic visit.

Coming into this visit our hope was that Melia's MRI would show a healthy functioning left ventricle with a thickened muscle from the pressure created with the PA banding she had last May.  The goal of that surgery was to strengthen the muscle of the Left Ventricle so that some day her heart would be ready for a Double Switch operation.  If you recall, right now her right ventricle is pumping blood to the body (the hard job) and the left ventricle is pumping blood to the lungs (easier job).  Without first beefing up the LV it would be ill prepared for the hard work of pumping blood to the rest of the body.

Coming into this visit I was also beginning to wonder if the Double Switch Intervention was appropriate and advisable for our healthy-appearing daughter.  From the little that is known about the future of CC-TGA babies it seems that internationally the approach to care is more of a watch and wait whereas the US seems to be aggressive at intervening earlier in the hopes that long term outcomes will be better.  The reality is no one knows what is best, but we do know that without intervention the majority of people with this anomaly will have early heart failure.  The hard thing for a parent is trying to reconcile putting your running, dancing, happy child with no shortness of breath and no blue lips through a risky surgical procedure.  But, today reminded me in a good way that my daughter's heart, although wonderfully and beautifully created for purposes I can not even begin to fathom, is not normal and healthy.  I want to give her my best and right now, given the country she lives in, the resources we have available to us financially and the wisdom being given to us by surgeons and doctors we feel it is to appropriate to move forward with invasive treatment in an effort to prolong her precious life.

That said, this is the report we got...
The ejection fraction (how well the ventricles pumps blood) for both ventricles is good (no heart failure).  The left ventricle mass has increased but unfortunately not as much as the doctors had hoped.  One question is whether the PA Banding increased the mass or if it was more a function of her growth alone that increased the mass.  Either way it is not enough to proceed with a Double Switch this year and so the surgeon and cardiologist will be discussing whether or not another PA Banding is appropriate or if we should just watch and see if as she grows the band will naturally get tighter and thus strengthen the LV.  At the same time the volume of the LV is increasing.  This is okay but we don't want the volume increase to get ahead of the mass increase because that could lead to heart failure down the road.  We also found out the tricuspid leakage is less and the VSD is almost gone, probably as a result of the muscle getting thicker.

We will have more recommendations to work with next week when we hear back from cardiology and surgery.  My hope is that they will not see a clear reason to intervene with another PA Banding and that after 6 more months her heart will have strengthened enough in mass to be able to withstand a Double Switch.  Only time will tell.

If you read this and are so inclined, your prayers for Melia's journey through the world of CHF, wisdom for us as we make decisions as well as wisdom for her doctors and advancements in the care of her condition would be so greatly appreciated.

Wednesday, January 9, 2013

A little scare

I know I have not written here since September, but I wanted to make a quick update because one of my purposes in this blog is to have a record of the experiences and emotions of a "heartmommy" for future families that have the privilege of parenting a child with Congenital Heart Disease.

That said, this past week has been a doozy!  Melia has remained surprisingly healthy this past year.  We have dealt with a few runny noses but that is it.  Until this past week!

She started in on Wednesday night with a cough and fever.  We were up most the night rocking and and trying to get the cough under control.  I had the humidifier going, vaporub lathered on her chest and a sippy cup filled with water in her bed.   The next day she seemed pretty good with Ibuprofen in her system but quickly went down hill when it wore off.

By Friday we took her in and the pediatrician said her fever was 103.8.  She was grunting and breathing very rapidly between coughing fits but her oxygen saturation remained normal so after getting a negative Chest X-ray we went home and tried to control the symptoms as best we could.

The problem is my baby has Congenital Heart Disease and I am a Physician Assistant.  The combination is not good and my mind was contemplating worrisome diagnoses like, "Could this be the beginning of heart failure or endocarditis?  Could her excessive coughing throw her into an arrythmia?  No, it's just a virus, but then again, what if?"

After a rough night and lots of labored breathing I called her cardiologist who agreed with the primary care doc that her symptoms seemed most like a viral infection and if her fever continued to rise over 101.5 off of ibuprofen I should take her in to the ER for another evaluation.

So, Sunday we took her to the virus infested waiting room at Children's Hospital and waited with many other sick kids for four hours to be seen by the overworked doctor.  Low and behold her oxygen saturation was dropping and her fever was still high.  So, we were admitted to the hospital under the care of her cardiologist.

Melia was on oxygen as an inpatient until discharged Tuesday in the late afternoon.  During her stay one of the first things she had done was an Echocardiogram.  Finally, my concerns were put to rest.  Everything was functioning as it should and the cause of her illness was RSV (identified from a nasal swab).

Interestingly, I had lots of time while sitting in the hospital to think about Melia and this virus.  Although, a child without CHD could get this illness her heart condition does put her at a greater risk.  Over the last year I had kind of forgotten she had a significant heart defect.  I mean, she runs and plays and laughs and whines and we are potty training her and all the other normal things that two year olds do so it's easy to forget on a day to day basis that my baby has a unique heart condition that can set her up for more worrisome illnesses.

At first, it made me a little sad and I thought that maybe we should be more careful with her exposures and contain her environment a little more.  But, after thinking and thinking and thinking (the hospital got a little boring) my conclusion was different.  I don't want to be careless about my daughter's experiences and exposures, but I'm also not going to treat her like she is so fragile that she can't do anything at all.  She has been living life with our family to the fullest over the past year and it has been great.  Yes, we will remain mindful of her heart, but it won't dominate our thoughts and take over how we live as a family.

We are home and she is on the mend.  Friends and family prayed for us and our parents helped us out more than we could ever have imagined.  We are thankful that this little scare reminded us of all the lovely, amazing people in our lives!! Above all, we are thanking God for healing her of RSV and for every day with her and her three siblings.

Tuesday, September 4, 2012

Happy Joy

One of Melia's favorite phrases to say is, "Happy Joy," and we are filled with "Happy Joy" after receiving a great Cardiology report today!  

Just to recap...Melia had her first open heart surgery (but not on heart/lung bypass) May 29, 2012.  She had a Pulmonary Artery Banding with the goal of strengthening her left ventricle and getting it ready for a corrective surgery called the Double Switch sometime in the future.  Although a technically "easy" surgery if the band is placed too tight it could lead to the rapid onset of heart failure.  If it is too loose then it doesn't do the job and multiple bandings are needed to accomplish the goal.  

After Melia seemed to bounce back beautifully from her banding she had a 6 week follow-up with Cardiology that confirmed our perception based on her outward behavior that things were going great!  The band was starting to do it's job and our Cardiologist thought maybe she could avoid future bandings because it looked so good.

Today we went back and had an Echo, EKG and office visit with the Cardiologist.  It seems that the velocity over her PA Band ranges from 3-3.7 which on the higher end is about the same as systemic pressures.  What that means is that her heart is already strengthening to the point that the left ventricle might be able to withstand the stress of pumping blood to the body.  She still has a mild tricuspid and mitral valve leak and a very small VSD, but nothing concerning or worsening.  The echocardiogram is not the most sophisticated test to measure the function of the left ventricle so down the road we will need one or maybe two Cardiac MRI's and maybe a Heart Cath to confirm that her heart is ready for a Double Switch.  Our cardiologist will run this by the local heart surgeon and decide together when the best time for an MRI would be.  But, for now we do not need to return for 6 MONTHS!  I am so filled with Happy Joy!!

Thankful to God for...
...good news...a caring and knowledgeable doctor...Melia sitting quietly for 30 minutes while they did an Echo and EKG...prayer support and encouragement from our family, Journey Group and close friends...Daddy picking up the other kids while we were at the appointment...running into a new friend who also spends quite a bit of time at Childrens...a hospital that is close to home...God's healing hand on Melia's daughter, Melia.  I love her so so much.  It's a crazy kind of God love for this little one...thankful that her heart was part of the reason she came to us!

Some pictures of my"Happy Joy" girl...

Saturday, August 18, 2012

Summer and Back to School

Hello again!  This summer has flown by and now my "big kids" are back in school.  The summer days at our home were full of late nights, neighborhood friends, old friends, swimming, swim team, baseball, lake parties, canoe rides, Melia's Dedication, camps, lemonade, cousins, an 8th birthday, road trips and lots and lots of hot dogs!  We had a great and wonderful time together.  We also had bickering, and name calling, and boredom and tears, but we got through those moments and came out of our summer with mostly thankful hearts.

When the second week of August hit our family was ready for the order and structure of school days. We all needed earlier bed times, organized days, regular excercise, homework due dates and routine.

Ryan and I were talking about the gift of seasons that God gives us.  When summer hit we were in need of a loose, care free schedule and when the school year hit we were ready for the more structured days that the fall lends itself to.  God is so good to give us fresh starts every day, every month, every season and every year.  His mercy is always new and fresh and life-giving.

I glimpse of summer 2012 with the Horner clan...